About Myelomalacia
April 3, 2008 at 3:51 am 270 comments
This web log is a search for more information about myelomalacia. It is not an easy search.
Myelomalacia is a softening of the spinal cord. In the context of veterinary medicine. Myelomalacia is described as a morbid softening or necrosis of the spinal cord (also referred to as encephalomalacia) where there is a gradual onset of paresis or paralysis. These two definitions are not different in any significant way.
References for these two definitions have been lost.
12 August 2011 Update: It’s unfortunate that the links to the two definitions above were lost. They were in reference to veterinary medicine, but they were the best fit for my symptoms that I had found up to that point. Since then, and in the future, I am copying any pertinent information for this blog as a quote with a reference to the link (where possible) where the original information MIGHT be found. Sorry for this inconvenience.
Entry filed under: General. Tags: definitions.
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Myelomalacia 
1.
dr. satish | November 18, 2008 at 6:14 am
pls give me full description about myelomalacia.
2.
Web Pixie | November 19, 2008 at 8:53 pm
The best description I have found that fit my symptoms and my diagosis of myelomalacia can be found in the June 9, 2008 post on this web site, specifically:
“cervical spondylotic myelophaty (myelomalacia) can cause variety of symptoms and some of them can last for years. Here are some: pain in neck, sub-scapular area, shoulder; sensory changes in lower extremities, motor weakness in the upper or lower extremities; numbness or parenthesis in the upper extremities; gait difficulties, like “spastic gait” that is broad-based, hesitant and jerky; upper extremity hypo- reflexia and atrophy, also bladder and bowel dysfunction may occur.”
This is a good description of MY case of myelomalacia. It’s been 5 years since I suffered the injury to my spinal cord that caused it.
More precisely, the injury to my spinal cord (evident in the MRI of the erea) is known as myelomalacia. It’s the softening of the myelin tissue encasing the cord (the myelin sheath) seems to cause confused elecrical signal – both motor and sensory signals. Its locaton, were the neck meets the shoulder. seems to cause “signal confusion” everywhere from the nect down.
It may also be causing cognitive confusion (like right now, as I am writing this). Please feel welcome to ask me for clauification. If you have anything to add, please DO!
Thanks for your comment, Dr. Satish.
3.
chemical | September 16, 2009 at 6:54 am
Hello,
my father was recently diagnosed with myelomalacia of the cervical spine. I’ve been reading up on the prognosis and I am very much afraid for him.
He had a car accident a little more than two decades ago, in which he broke his arm and afterwards complained of severe neck pain. According to him, the pain went away when he followed the advice of a doctor and did some exercises for the neck.
Since last year, he’s been complaining of numbness of the shoulder and arm, jerky legs, numbness of lower extremeties, inability to balance himself while walking, and i think he may even have lost some weight. The spine specialists are recommending surgery, either laminectomy or ACDF, the orthopaedic surgeon will decide which.
Anyway, I am more than concerned for him because he also has rheumatoid arthritis. He’s not yet undergoing any aggressive treatment for it. we tried Humira but it stunted his immune system and he started getting really sick so the doctors advised that we stop it. Hopefully, after the surgery we can focus on a different treatment plan.
I am just wondering if I can anticipate any improvement after the surgery? I also read somewhere that myelomalacia may also result in paralysis of the respiratory system or of extremeties. This is worrisome.
4.
Web Pixie | September 22, 2009 at 5:29 pm
Your dad’s situation sounds very similar to mine about 6 years ago, partclatlarly the jerky legs, numbness of lower extremeties, and inability to balance himself while walking. It was awful!
I had an ACDF inlate December 2003. The neurosurgeon said that whatever improvement I had in 2 years was all the improvement there would be. That turned out not to be entirely true.
I experienced much improvment by 2006 but I was discouraged because I still had the jerky legs and excruciating hand pain that I had prior to th surgery. Fortunately, my condition DID continue to improve to the point where I was essentially pain-free most of the time by 2009.
I attrribute the improvement after sugery to diet and exercise. I added a whole-food supplement and a multi-vitamin that my physical therapy doc recommended and took daily walks. If the weather didn’t permit walks outdoors, I used a treadmill.
If your dad’s condition IS like mine, I believe you have much to be optimistic about as long as you and he have plenty of patience and determination. It’s east to get discouraged, but that’s okay once in awhile. If he sticks with a healthy and enjoyable exercise program and good nutrition, his symptoms should continue to improve long after the ACDF even if the myelomacia is still there.
I wish the best for both of you!
5.
Kim | July 12, 2012 at 5:30 am
i have sever cervical myemalacia oat c5 and c6 and now i have slipped another disc at c7 and have part of my spinal cord lifting a ligiment at c4 i am 42 single mum original injury caused by partner . Had a decompression/laminectomy, removing c5 and c6 and now i am worst and now deemed inoperable my advice get a few opinions can do more harm than good cheers
6.
John Collier | June 11, 2013 at 1:06 pm
Please can you tell me how you are at the moment?
7.
Camille | June 30, 2010 at 7:36 pm
Hi! I was recently diagnosed with cervical myelomalacia and I’m about to have surgery in a few weeks. I am still confused as to why I developed this condition, since I have not had any neck traumas and the doctor told me it is an hereditary condition (i.e. genetic). He also told me that I could develop it somewhere else in the future. Any info. on this?
8.
Web Pixie | June 30, 2010 at 9:35 pm
What kind of surgery are you having for the myelomalacia? Do you mind describing your symptoms?
I have not heard of it being an hereditary condition, but maybe the cause of it is. Is the surgery supposed to help the myelomalacia, keep it from getting worse, or something else?
I wish you all the best!
9.
Web Pixie | June 30, 2010 at 9:43 pm
There is a forum where you might find more info on this. One of the entries is at http://www.steadyhealth.com/myelomalacia_t69166.html.
If you go to that link and scroll down, it may list some other entries to that forum that you might find helpful.
10.
LINDA | July 22, 2010 at 9:11 am
My son is 23. He was thrown out of the back of a truck. The accident occurred 10/04/09. He sustained a 11mm subdural and subarachnoid bleed. He had appeared to have recovered completely except for Headaches. The last CT he had after accident showed no further bleeding or any damage. Recently headaches had become worse and he slept harder and more often. Recently had MRI of brain/spine. Brain showed no problems but the spine was different. It showed a .9 craniocaud x.3cm AP within the thoacic spinal cord at the T3 level. There is volume loss of the thoracic spinal cord just distal to this linear lesion. What are we looking at. They say possible Myelomalacia secondary to his accident. Everyone is saying no big deal but it is to me. I need to medically understand this condition and what are we looking at. Can anyone explain.
11.
Web Pixie | August 12, 2011 at 4:02 am
Linda, I’m not really familiar with a lot of the terminology except that the myelomalacia secondary to the accident more or less means the accident caused it. Of course, you probably already knew that! It’s probably good that people are telling you it’s no big deal but I can certainly understand how you would not agree. It’s been almost a year since your post. I hope your son is doing a whole lot better and that it has indeed turned out to be no big deal.
12.
Noor | September 7, 2010 at 10:13 am
I have neck pain for many years. MRI report shown that I have myelomalacia at C5 and cord compression at C4/5 and C5/6. I have seen a neurologist and an othorpaedic surgeon, both recommended surgery. I am 47. The pain is annoying but bearable. The surgery will stop further damage to the spinal cord. My worry is the complications which may arise from the surgery. I am so afraid to end up paralyse neck down after the surgery – this is reported as rare but considering that I am still healthy and able to enjoy an active live, I am terrified with the prospect. Any information on similar surgery is much appreciated
13.
cat10 | September 27, 2011 at 5:31 pm
WAIT
14.
John Collier | June 11, 2013 at 1:10 pm
Can you tell me why you say ‘WAIT’ as it may be of great help tome
15.
Web Pixie | September 28, 2011 at 3:15 am
Hi Noor,
After having had this diagnosis and the surgery, I would worry more about being paralyzed from the neck down by avoiding the surgery. The only suggestion I would make is to have it done by a neurosurgeon. My neurologist referred me to an orthopedic surgeon also, but a relative who is also a physician strongly recommended I see a neurosurgeon.
Since it’s been over a year since you’ve posted this, though, I would imagine that you’ve either decided to wait or you’ve already had the surgery. Let us know how you’re doing! Hope all is going well.
16.
Kim | July 12, 2012 at 5:37 am
without lenghthy explaination I had a prostetic neck put in c4/c5 missing and what went wrong happened after surgery and now i am deteriating rapidly unbearable symptoms and are inopperable please get a 2nd oppinion at least do heaps of research the reason my friends no one gives you any ansewers is because they dont know diddly Kim
17.
John Collier | June 12, 2013 at 8:18 pm
How are you doing now Kim?
18.
Camille | October 19, 2010 at 4:22 pm
Hi, Noor
I am 39 years old. Today is my third week after surgery for C3 to C7 disk herniations and nerve compression, and I feel great. Surgery was done at the front of the neck (do not recall the medical term). The first 3 to 4 days you may feel a soar throat and neck pain (bearable with prescription and IV drugs), and you may need to sleep sitting down. However, the second week you will feel a lot better. Use a neck brace and start walking as soon as the doctor lets you (it helps a lot in your recovery). As for your concerns about being paralyzed, I had the same concerns, but just thought of the long term problems if I did not undergo the surgery. Try to research the doctor, his success rate and, if possible, talk to some of his patients who have already undergone the procedure. That sure helped me. Good luck!
19.
DAVID E. BUTLER | August 16, 2011 at 3:18 am
I live in SE, NC. and can’t even find a doctor that will talk to me about it and they run the other way when I ask about treatment!!! Drug addicts get Doctors and Med’s, hell I had to look-up and learn to read my own mri report, the doctor at Duke Med didn’t even tell me about it at all!!!! What have I got to look forward to, the wheelchair again……
20.
Web Pixie | August 16, 2013 at 8:10 pm
Hey, David! How’s it going? Haven’t heard from you in awhile so I’m hoping it’s ’cause things are going so well. Can always hope, right? 🙂
21.
DAVID E. BUTLER | August 16, 2013 at 8:33 pm
F.I.N.E, No just tired of try’n to pee up stream…. “Spit in the wind, ya, git spray in your face….”S.S.D.D., Ain’t got socialized medicine here like they do where John lives in England, so us poor folks just got to suffer with Doctors that feel ‘our’ pain more then we do (course, you know I’m be’n Sarcastic..). Latest Doctors said to me, ” I’ve found that this works better on the type pain you feel. ! (How the hell would he know ?! He won’t even listen to me!) Other then that, “Just another day in Paradise!” But, thank you for thinking of me, that dose mean a lot, no joke.
22.
Colleen | September 4, 2011 at 1:30 am
Hello – To net out my best advice to others 1. If you have spinal cord issues, even asymptomatic — have at least yearly followup with a neurologist. 2. MOST IMPORTANT ADVICE I CAN GIVE — ALWAYS — ALWAYS GET COPIES OF ALL MEDICAL TESTS AND REPORTS. READ THEM THOROUGHLY. IF THERE ARE WORDS YOU DON’T UNDERSTAND, ASK THE DOCTOR TO EXPLAIN THEM. 3. Be happy in this moment. This moment is your life. I am 60 years old and am having increasing symptoms of myelomalacia. In 1995 I was diagnosed with spinal cord impingement c5-c6. I had very hyperactive reflexes and clonus (shaking with ankle jerk). Also they found a neurogenic bladder – small, doesn’t empty totally. BUT I had no pain, no weakness. Oh. And chronic blood in the urine — they never to this day have figured that out.
I was followedneurologically from 1995-2002 — the clinic cancelled my appointments three times in a row so I figured, what the heck, they can’t be too worried about it. I didn’t follow with a neurologist between 2002-2008 — my big mistake – but wasn’t having any new symptoms.
2008 I noticed significant increased fatigue and also my left leg was shaking going down stairs. The neurologist ordered MRIs of the cervical and thoracic spine. After the exams she told me and my internist there were no changes between 2002 and 2008 — no need to see her unless I had increased symptoms.
2009 — elevator out in the building I was working in — I didn’t carry but pulled a pull cart, thump, thump, thump down 8 flights of stairs – then burning in hand/arm/shoulder – figured I pulled something.
New doc – neurologist — thinking carpal tunnel I think — ordered MRIs — calls me with results — extremely concerned on diagnosis of myelomalacia at C5-C6 and severe spinal stenosis C5-C6, C6-C7.
He went back, got my 2008 (1 1/2 yr prior) MRI — there it was MYELOMALACIA.
November 2009, C5-C6, C6-C7 anterior fusions with titanium plate and three screws. I had it done OUT-PATIENT — I know that sounds strange but I asked if it was possible. The doc said usually one night for one fusion, two for two, but if I was well enough, yes, I could do that. I hospital is no place to rest — plus the infection rates are enough to kill anyone these days.
My sister was the gate keeper and wasn’t going to let me out if I wasn’t good enough. I felt AMAZINGLY WELL. I asked the nurse if it was just because I was on drugs – no, I was having an amazing result.
Recovery from my C5-C7 fusion: Extraordinary. I used meds for only three days. My sister stayed with me for a week. The only time my neck hurt was in the car going over a bump or going from laying down to sitting. I was back to work in three weeks —
BUT I carried nothing and I had someone drive me for ten weeks.
I did physical therapy – excellent therapist — for 12 weeks for neck/ back stregthening and range of motion. Excellent recovery.
AND THEN fell in May 2010 – broke my ankle in four places – plate, pins, screws, two surgeries, great doc, great recovery – much worse recovery time/pain than my neck.
So, thought I was “home free” healthwise in 2011. AND THEN started having burning in left hand, arm, shoulder, and other places – face — that’s not good — too high for c5-c7 — as well as spasms in my shoulder, left leg and cramping in both calves. Excellent.
So have had MRIs, and EXTENSIVE EMG and NMG — (shocks and pins basically) in upper body and lower body — all pointing to, you guessed it, the myelomalacia. Haven’t finished all tests yet — they are trying (hoping I think) to find some other benign explanation for my symptoms.
SO FAR am working full time, doing everything — including worrying getting my house and will in order etc.
To me myelomalacia seems to send confusing messages to the
brain with varying symptoms — sort of like a frayed cord — if you plug it into the wall straight you don’t get a shock – if you bend tie cord – you get a shock — frayed wires, erratic electricity/messages to the brain.
23.
Web Pixie | September 17, 2011 at 4:11 pm
I like your description:
“To me myelomalacia seems to send confusing messages to the brain with varying symptoms — sort of like a frayed cord — if you plug it into the wall straight you don’t get a shock – if you bend tie cord – you get a shock — frayed wires, erratic electricity/messages to the brain.”
I agree that it does seem very much like that. People have asked me why, if the “scar” is at my neck, why do I ave symptoms with my legs? I think the”scar” just garbles whatever messages run through that area of the cord – but, of course, I don’t have any medical basis to exactly say that. It just seems to me that that’s what is happening.
I’m really glad you left this post, Colleen. I really hope they find a benign cause for your recent symptoms. Plus, your post gave me the extra little push I needed to ask my neurologist for continuous follow-ups. I recently started getting weird headaches that are hopefully unrelated to the myelomalacia, but I was referred back to him to investigate them. I have another appointment with him next week, so I’m really glad you left this post to let everyone know that myelomalacia is something that needs follow-up. You can’t just “fix it and forget it.”
(Not that mine is “fixed.” I still take a rather large dose of neurontin every day just to function. I can REALLY tell if I forget to take it on time. I’m really afraid to try to go back to work, because of both the meds and the mild but persistent symptoms.)
Thanks again and best wishes to you, Colleen! Please keep us posted on what how things progress for you. I hope they find nothing and that your symptoms just resolve on their own. 🙂
24.
Kim | July 12, 2012 at 6:07 am
we all explain our symptoms i myself have had c5 and c6 removed with new complications now I am inoperable. but does anyone know the outcome other than day to day and new symptoms ?
25.
Ganesh P. | October 21, 2011 at 2:02 am
There is a lot of humour in your description. That should help you live long and healthy. May God bless.
26.
DAVID E. BUTLER | September 11, 2011 at 11:35 pm
You are lucky my doctors act like I don’t know shit from shin-ola, and that I have a vivid imagination, I’m 55 and the Doctor had the gall to tell me “it’s old age!” I think I need to find a Good Horse Doctor
27.
Web Pixie | January 6, 2012 at 8:05 pm
I felt the same way at the time, back in 2003. My cat’s vet. gave me a more fitting diagnosis than any of the docs did. That is, until I finally went to a convenience clinic and got referred to a neurologist – finally! He sent me straight to a surgeon but I was too much in denial, I suppose, to realize the reason he did that was because he KNEW I needed some kind of surgery. Fortunately, that experience prompted me to go to a neurosurgeon for a 2nd opinon. I wish I would’ve found him sooner or maybe I wouldn’t have all this hand pain now – but at least the surgery happened soon enough for me to be able to retrain my legs to walk somewhat normally again. Thank heaven for small favors! Honestly, I wish everyone here to have at least as much success. Best wishes to all – do not give up!
28.
DAVID E. BUTLER | January 6, 2012 at 8:37 pm
Hell around here you are just supposed to sit with hands folded and ask nothing, forget the 10 questions, just sign the check…. Be grateful we let you in the office, now go…..
29.
Sampath | November 6, 2011 at 1:32 am
I have been suffering from pain in neck (C5-C6) since 2002. As I was doing well despite pain it didn’t cause much concern till lately when I had some tingling and mild pain in my left foot followed by pain in hips. I also suffer from fatigue.
I was diagnosed with myelomalacia (especially at D10-D11). There is some problem at L2-L3, L4-L5 and L5-S1 levels also. Physicians say not to worry and go on with my work, but surgeons ask me to go for a surgery. I am scared of surgery.
I am confused—-any comments, please.
30.
Web Pixie | January 6, 2012 at 9:03 pm
No one can blame you for being scared of surgery! I was too and I’m certainly not qualified to recommend for or against it. Because of the tingling and mild pain you mentioned, though, I will share with you what a physician relative said to me.
I had the daylights scared out of me when surgery was recommended. The pain and tingling in my hands, feet, and hips too was also frightening but I really wanted to believe it would go away. The thought of surgery near my spinal cord, at my neck, seemed more scary than just living with the weird sensations – except that they kept getting worse. It seemed like every day there was some new sensation, or lack thereof, somewhere.
Then a relative of mine who is a doctor told me that I could wait if I wanted, but she would suggest that I have the surgery before I lose more function. I hadn’t yet acknowledged to myself how much function I had already lost. After reading what could happen, I certainly didn’t want to lose more! I took her advice and, today, I’m glad I did.
I have no idea how similar your situation is to mine, so there is no way I could or would make any suggestions about what you should do. I simply wish you the best in whatever course you choose to take.
Please keep in touch! I believe our comments to each other help us all, at least a little bit, to deal with this confusing diagnosis. Every situation is unique and we each must choose our own path, but it has really helped me to know I’m not alone with this. From reading the other comments, many others feel the same way.
Feel better soon!
31.
DAVID E. BUTLER | January 7, 2012 at 3:23 am
I’d like to know where all this surgery is go’n on, Doc’s don’t talk down here…
32.
Inclaire | December 9, 2011 at 4:22 am
I have just been diagnosed with mylomylacia,i was diagnosed with syringomylia in 1997, then had a bag fall on my head in 2008. cutting g a long story short, I was afraid of the surgery offered, but having read your stories, I will definitely have the surgery. Thank you all
33.
DAVID E. BUTLER | December 23, 2011 at 4:27 pm
Hell, they didn’t even offer me any options, I’ve got Bi-lateral frontal brain damage (constant with migraines, except it’s the bad neck not migraines. But you know Doctors aren’t wrong and we know nothing!), the doc just left the room, say’n nothing! Get fixed If you have hope! Good luck….
34.
Peter bensche | March 10, 2012 at 1:13 pm
I am a 50 year old male; I broke my neck while in the military in 1995 and had a c5/6 discectomy. I have had severe sensory nerve damage in both l/r arms since then, 16 years. I have functioned living in chronic pain with little relief this whole time. I am fortunate and have an administrative job as a project manager in construction. In jan-11 I started have pain in my l/hip and had a steroid shot to stave off the hip replacement. This worked and stopped the pain but after trying some physical therapy for a month I started having weakness in my left leg and foot drop, I went back to my doctor who ordered a MRI of both cervical and lumbar as well as a EMG on my left leg. The EMG had signals all over which the doctor said didn’t make sense. This was in Aug-2011. I had a herniated disc at L3/4 & L4/5, surgery was performed because by this time I was unable to walk without a cane and a wall or solid object as additional support. Of course not using a walker like I should have. Needless to say I was very worried since I wasn’t able to walk at all. I had high hopes that I would likely be walking again after surgery, this has however not been the case, I had surgery in Sept-11 and 5 months later I have developed almost every symptom of cervical mylomelacia except loose of bowel-bladder and sexual desire. I have had EMGs on both legs and arms, neck, back and face with the results all over the place. Also a full spine MRI, I now need a second cervical surgery (discectomy on C3/4-C4/5 bone spur removal and fusion of these to my already fused C5/6) my condition has progressed downhill in the last 5 months to the point where I can barely lift a cup or brush my teeth. I am typing this using speech recognition software on my computer. After reading that this could cause respiratory failure and death my attention has been awaken and I am pursing surgery at the earliest I can get scheduled. I am not asking for advice but this helps being able to open up to others who are in the same position, I am current a quadriplegic and thank god I have a loving and wonderful wife and family for support.
Peter in Dallas TX
35.
Web Pixie | March 10, 2012 at 7:40 pm
Thanks for your post, Peter.
Please continue to check in with us whenever you can or feel like it. I truly hope it helps, as I’m sure what you write will help the rest of us as we thread our individual ways through the ups and downs of this journey.
I hope your upcoming surgery helps to reverse some of what’s happened to you over the past 14 months. I really admire your attitude and outlook on life. Please keep us posted on how things are going for you!
36.
Anne Whalen | April 17, 2012 at 6:37 pm
Peter,
I felt like I was reading my life story, only mine started with 3 cervical herniated disc and because I was injured in my federal job I had to wait over 10 months for surgery, No decent Dr. will deal with OWCP so my surgery failed. Diagnosed with myelomalacia 3 years ago by radiologist but my Dr. said it wasn`t. I`m at the point where walking/balance/using hands are all going fast. Can`t find a Dr. who will deal with me. Too much hassle I guess.
I too had to purge.. I hate to complain to family friends.
Good luck to you,,
37.
Web Pixie | April 20, 2012 at 10:49 pm
Anne,
I really hope you can find some doc somewhere who can help you. The symptoms you’re describing sound so much like mine were …the problems walking normally, balance issues, severe hand and wrist pain!
Instead of 10 months, my surgery was probably 3 months after my injury – but mostly because I was scared. I often wish I hadn’t waited so long, but I have been able to regain more function over time. It worries me that your symptoms seem to be getting worse instead of at least staying the same or getting better.
One thing that your post reminds me of is how every time I went anywhere for help with this, the first question was always whether it was from a work-related accident. It made me wonder if treatment would be different if it was and it almost seems that might be the case – which is despicable! If it’s any consolation, though, it doesn’t seem to me that waiting 3 months or 10 months makes a difference and surgery doesn’t cure it. From what I’ve read the damage itself is irreversible but the symptoms can be managed more or less effectively, once the damage has been stopped. Please keep trying to find someone who will help you and treat you properly to keep your symptoms from getting worse!
And please feel free to share whatever you’d like about it here, whenever you like! I’m glad if it helps to read that you’re not the only one dealing with this. It has helped me too and I’m sure your story will be a help to others as well. Who knows but maybe someone will post something that would turn out to be a big help for you! I wish you nothing but the very best, Anne.
38.
Anne Whalen | April 24, 2012 at 2:46 pm
Thank you so much for your kind words, understanding and encouragement. I think I hit bottom last week and my primary neurosurgeon just disappeared for the whole week. No meds, no referrals, treatment approval… nothing! My regular internest who wouldn`t touch anything to do with my spine took pity on me and prescribed some new meds that really seem to help. Neurontin did nothing for me way back when but she gave me Lyrica and Medrol. Within 2 days I almost felt human. I`ve also possibly found a good neurosurgeon.. pray they will OK the 2nd opinion.
Not only has my luck changed since finding this site, your understanding and kind nature has lifted my spirit. Good Luck to you in your health endeavors and Keep Positive 🙂 Thanks again…
39.
Peter Bensche | April 24, 2012 at 8:12 pm
I am glad to see that others are suffering as much as I am. i lived for 16 years with only arm issues(weekness and severe pain in hands and wrist) but now am suffering from perifial neuropothy of all my extremities, the worst time fro me is night time when I have severe pain in both hips and lower back. This on top of not being able to move my legs makes for a nonstop frustrating nights attempted sleep. Thank the lord my wife gets up to help move my legs or help me roll over. I am told by the 3rd surgeon that i have seen that the surgery will only prevent things that they see may be causing the problems to be worse but no guarantee that they will fix anything or things might get better. Pain releif is all I would like.
40.
Web Pixie | April 30, 2012 at 8:39 pm
Your wife sounds wonderful! I’m glad if all this helps, knowing there are others who can relate to what you’re going through. Sixteen years is a long time but no doubt we’ll be here for you for as long or as often as it helps.
Hopefully, there will be refief to this suffering – yes? I keep hoping for it and I’m happy for the moments when it’s not so bad. I’m glad you’re able to share your thoughts and experiences with us, Peter. 🙂
41.
Catherine | May 16, 2012 at 8:55 pm
I am so glad I found this website about something as bizarre as myelomalacia. I was just diagnosed with this dreaded disease process. I started experiencing numbness and tingling in both of my lower extremities the latter part of last year. An MRI done in Dec 2011 revealed a spinal tumor in my thoracic back. Surgery was done Jan of this year by neurosurgeons to remove the tumor, thus preventing paralysis. Prior to this surgery I had no back pain, only numbness in my legs. Since the surgery, my legs are much stronger, only mild numbness in right leg at night. But I now have a lot of pain in my upper back, shoulders, and neck; sometimes radiating to my chest. The most recent MRI showed myelomalacia.. I have been doing physical therapy 3 Xweek since the surgery hoping for a good recovery. Now I really feel anxious and scared.
Catherine
42.
DAVID E. BUTLER | May 19, 2012 at 7:20 pm
Feel blessed, they won’t even talk to me about it, or treatments!
43.
Catherine | May 21, 2012 at 5:31 pm
Have you had any surgery prior to diagnosis of myelomalacia? Are you seeing a neurosurgeon? Tell me more about your circumstances. I know you cannot rely on doctors, they are just too busy with things they know more about – you have to look out for yourself and research and fight. I have been reading about stem cell research with myelomalacia. I just may have to go and offer to be a guinea pig when my symptoms begin to decline again. Don’t give up.
Catherine
44.
DAVID E. BUTLER | May 22, 2012 at 2:16 am
I had a fusion of c5&6 12yrs ago, and last year MRI showed Bi-lateral frontal lobe degeneration ( consisting with migraines, I don’t have migraines !), and Myelomalacia…. I have been run round the ringer and my nerves can’t handle the games and ‘hoop jump’n’ that it takes… Do you have any idea how meany times I’ve had to tell this same story ( about 6 times in one office, Hell you know the drill!), over the years….. it’s got so bad I don’t even leave my room….. And this type’n ain’t easy with finger that don’t work 1/2 the time. Call me 910 207-6057
45.
Web Pixie | July 15, 2012 at 12:23 am
Catherine, I hope things are going well for you. It’s been so long since your post. It’s great that your surgeon is so optimistic!! How are things going with the physical therapy?
46.
DAVID E. BUTLER | May 22, 2012 at 2:19 am
puter’s are not my friend, I looked for some guinea pig studies and found none…
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Catherine | May 22, 2012 at 12:46 pm
That is so weird that you have spinal and brain issues together. Before they realized I had a spinal tumor, they found a tumor in my frontal lobe also, only it is not causing any symptoms. Since you had problems in the cervical spine, are most of your symptoms upper body? Do you experience a lot of pain? How fast was the degeneration process for you; you mentioned that your surgery was 12 years ago – are you still declining or was it all right after your surgery? I know I am asking a lot of questions – I’m just trying to figure out what I;m in for since this is all fairly new for me. Thanks for responding back to me.
catherine
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DAVID E. BUTLER | May 22, 2012 at 4:59 pm
What you are in for……I can’t find out what I’m in for, Doctors won’t return phone calls. Nothing from breast down works right (have to think hard to get parts to move!), as of lately have been losing what sense of balance I have left….I quip, The only reason I got out of the wheelchair is ’cause “God knows I ain’t man ‘nough to live in one!”. I guess I look’n at a Steven Hawkins future, Hell I don’t know and can’t get anyone to say one way or the other…
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DAVID E. BUTLER | May 23, 2012 at 8:10 pm
Damn, you mean their are humans on the other end of these keys….Thanks PETE…You are foe-show a mid-bless’n, it was nice to hear a Human Being….. I’m so tired of being spoken-down to (no pun implied, you know what I mean), or in the third person ) Du Hu.., I ‘m sittin’ right here, and I hear you……. If you don’t know then just say so, hell I’m the one that got to sit in it…. Damnit, my brain works all too well…..”YOU CAN’T FIX ME!”…. least make me comfortable as you can , I ain’t go’na sue ya, Doc. I was broken before you got me!!! Like I told Peter, “I think I’ll just cut out the middle-man, and just go to the Horse Doctor…..”
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Catherine | May 31, 2012 at 9:45 pm
David, sorry I have not responded back. I’m at a loss for words after all the reading I’ve been doing on this subject. It’s like there is no hope out there. I’m not sure I will be as strong as all of you on this website describing your suffering lifestyle. Let me know how the horse doc works out (LOL)
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DAVID E. BUTLER | June 4, 2012 at 5:52 pm
Nearest, I can fig’er, Myelomalacia is to the body What Alzheimer’s is the the Brain ( after awhile it just “Don’t work anymore!)…… And no one will tell you that…. Doctors won’t say, “I don’t know.” !
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DAVID E. BUTLER | June 4, 2012 at 5:59 pm
Oh, and Cat, the local Vet. here in ‘White’s-ville’,NC. , She ain’t heard of it either… But most of the research seems to be from animal studies, yea right…lol….
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John Collier | June 12, 2013 at 8:21 pm
Please let me know how you are today
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DAVID E. BUTLER | July 1, 2012 at 11:46 pm
Barometric Changes and Lighting, sure throw a ‘hitch in your come-a-long (shorted-out)…..Ouch ….
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Catherine | July 3, 2012 at 1:47 pm
I don’t undestand what you mean???? Could you please explain. I guess I’m just a little dense right now – I just returned from FL, visiting my daughter who recently lost her baby.
Catherine
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DAVID E. BUTLER | July 6, 2012 at 7:41 pm
Sorry about the news! I can tell the weather changes before The Weather Ch.(shorts-out the electrical system of the body.)! ‘Hitch-in-come-along’ (old say’n.)
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Christina Bensche | September 20, 2012 at 3:04 am
My brother, Peter Bensche, of blessed memory, passed away on September 6, 2012 of respiratory failure. I noted that he’d written in this blog and thought I’d let you all know. His symptoms progressed (de-gressed) rapidly since April, with the doctors not really knowing what was going on. Most recently they seemed quite certain he had ALS. He was a wonderful man, husband, father, son and brother, right up until the end. Thank you for your support of him as he shared his struggles with you, who could truly understand.
May your lives be full even as you struggle with this condition.
Christina
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Web Pixie | September 21, 2012 at 2:08 am
Christina, this is just so sad! My heart goes out to you and I thank you for letting us know. I remember Peter’s posts and noticed that he helped others feel less alone in their struggles. He seemed like such a wonderful person. I was glad that this forum gave him a place to open up to others who understood He was very blessed to have such a loving family, but I truly am very sad to know that the world lost him at such a young age.
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DAVID E. BUTLER | September 22, 2012 at 2:03 am
Words can not or aren’t good enough to convey my hopes and prayers for those left behind… Christina. It’s the “They just don’t know!” part that is not except-able. And yes, it seems this dose turn to ‘ALS” ‘course that is my own assumption ! Still can’t get the time of day, from “Doctors” here in ‘Poe-donk’ , NC.It gets that I’m scared to look things up, for just finding out my worse fears are true….. I used to joke, ” When you’re dumb, yea got ta be tough, Well, if I git’s any tougher then this, I’ll have calluses on my arse!” Thing is it’s hard to find the humor anymore……
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earthshiftcommunity.ning.com | November 2, 2012 at 10:12 am
Hi! Do you know if they make any plugins to protect against hackers?
I’m kinda paranoid about losing everything I’ve worked hard on.
Any tips?
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Web Pixie | December 17, 2012 at 2:28 am
WordPress seems to be pretty good at protecting against spammers …probably hackers too.
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Catherine Padgett | December 17, 2012 at 4:04 am
I am going for follow up MRI’s this week. The pain is so increased; but I don’t expect them to undestand. All of this really sucks.
________________________________
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Web Pixie | December 17, 2012 at 3:33 pm
I hope the follow-up MRI’s show good news for you. Best wishes!
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DAVID E. BUTLER | December 17, 2012 at 7:26 pm
Pix, sorry to hear that! Do they ever understand….. I’ve read ‘ The Oath’ Doctors take in Three versions and some how we don’t count anymore…… Some how we lost!
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Web Pixie | December 18, 2012 at 4:21 pm
Indeed, David. For all the improvements in technology, somehow something important has often been lost.
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Web Pixie | December 17, 2012 at 2:26 am
You are most welcome to do that. Your participation is so appreciated! Perhaps your links will offer even more info to readers of this blog. Thanks!
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Catherine Padgett | December 17, 2012 at 3:57 am
why was this sent to me? Do I have a virus on my computer. Pls respond. Thanks
________________________________
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Web Pixie | December 17, 2012 at 3:32 pm
I was replying to a post made on November 22. If you did not post that comment, pls let me know so that I can find out from WordPress why my reply went to you. Thanks.
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Ty | January 31, 2013 at 1:48 pm
Hello everyone my name is Ty im 40 and i just found out that i have this thing called myelomalacia its in my neck, i got numbeness in my right leg all the way down to my toes shocking sensation goes down my shoulders when i tilt my head back,neck stiffness and pain My doctor reccomended surgery, is there any other options before i just jump right into surgery? i am so afraid of surgery and now im trying to research on my own to figure out what is the right thing to do please any good info would help me out..
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Web Pixie | February 3, 2013 at 8:56 pm
If your doctor is someone you trust and he or she refers you to a neurosurgeon you also feel comfortable with, you may want to be evaluated for the surgery sooner than later. In my case, it was very, very scary to consider surgery around my neck – espeically after the first eval. I had with an orthopedic surgeon.
A friend referred me to a neurosurgeon who she trusted over anyone, but I was still too scared. That friend finally pointed out to me, after she had spoken to the neurosurgeon, that I should really get the surgery before I lose any more function. She was right and I’m glad she gave me that advice.
It took awhile to regain some of the function I had lost and I still have some loss of sensation in some places and pain in others that may never go away. I wish I’d had the surgery sooner than I did but I’m also glad I didn’t wait even longer to have it.
That’s all we can do here is offer our own experiences and every neck or back is different. A lot has to do with what is causing the myelomalacia. In my case it was a disc bumping against my spinal cord, so it was relatively easy to identify the cause and remove it. There are other things that cause myelomalacia, I’ve been told – so identifying the cause of yours may well be the first step in helping you decide the best course for you.
Best wishes to you, Ty, and please keep us informed about your progress. Your story will almost surely help others, as I hope our stories are of some help to you.
Also, if you do find some helpful information on the web, please share the links with us! Again, I wish you ALL the best.
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Anne | February 3, 2013 at 11:16 pm
I continue to get no answers from Dr.`s who will not explain myelomalacia- just shrug it off like it`s no big deal and discuss radiculopathy, discs, etc. but won`t tie it into myelomalacia. But all my new and scary symptoms fit right in to this condition. Are Dr.`s ignorant or afraid to discuss options? MRI`s have picked up myelomalacia since 2007 but no treatments have been suggested and symptoms just get worse. I have been to 4 different Dr.`s and all refuse to discuss – afraid of a lawsuit or what? I just do not understand and don`t know where to get help.
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Web Pixie | February 4, 2013 at 12:03 am
I don’t know what others have done to get the ball rolling, so to speak, but I hope some will post a note here that could help.
In my case, I got nowhere – not even a diagnosis from the first doctors I visited. It was not until I went to a convenience clinic where the doc there took note that something was happening that needed to be addressed. He made an appointment for me with a neurologist and told me that was the best way to get that appointment. He said that had I tried to get the appointment on my own, it could be months before I’d be able to be seen.
Once that appointment was made, things finally started to happen. I told my family practice doc about it and he began ordering additional tests that were made available to the neurologist. Then the neurologist ordered more tests and came up with a course of action.
I don’t know if this will be of any help to you. If not, I hope someone else can post something that will. I wish you the best, Anne. Please keep us posted on how you’re doing.
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DAVID E. BUTLER | February 7, 2013 at 9:04 pm
God knows I hope you have better luck then me… I can’t get the time of day from ‘doctors’ either…. And yes, the things I find on the web scare the hell out of me..
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DAVID E. BUTLER | June 7, 2013 at 7:40 pm
Yo, pixie, well I made it back.. didn’t git killed or committed (lol) “Three hour tour”, doc in Wilmington,NC.& back PTSD is not my friend (don’t fold-up and don’t do car trips).. At least they are ‘real’ and didn’t look at me as if I’m from another planet (takes one ta know one, vern), well three more trips (ya, local MRI’s no good, really) and then, help I’ll have… Thank God, light at the end of the tunnel! Oh, I’m inoperable, so I will end up drull’n with som’body wipe’n it off, BUT NOT TA DAY…HEY….HEY…b|
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John Collier | June 11, 2013 at 12:56 pm
What did you decide on ?
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John Collier | June 12, 2013 at 8:23 pm
Please update us ,I am sure we would all be interested to know how you are
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John Collier | June 15, 2013 at 7:31 am
My neurosurgeon was emphatic that surgery is the only option…..I do believe him but despite the dangers of not having surgery I have come across many case histories where the patient has regretted it
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John Collier | July 4, 2013 at 6:15 pm
I don’t know how you progressed,but I hope all is well Ty……I’m having to bite the bullet and have the surgery I fear so much …..I can tell you that I researched and researched, day after day after day….if there was an alternative I would have found it
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Diane | July 4, 2013 at 6:18 pm
Why are you afraid of the surgery? What surgery do you need?
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Anne | February 8, 2013 at 2:11 pm
Thanks for the suggestions. I had forgotten a neuro consult was suggested in 11/12 by my Dr. – He just never gave me a referral, but I will push for that. I just now figured out how to read posts from start to end instead of bits and pieces. So sorry to read about Peter – what a loss, he was generous in sharing info and helped me alot.
I had never tied some symptoms into myelomalacia – a severe bout with extreme, inexplicable exhaustion to neck pain & 1st ever migraine & worsening balance problems to burning pain both arms/hands to loss of strength/use of hands.. EMG was “all over to place” as others have stated. The lack of concentration/confusion – due to pain constantly disrupting sleep – or myelomalacia?. 2 months of 20 consecutive minutes of sleep maximum left me with no to low brain function.
Yesterday the hand surgeon told me he can`t do surgery until neck issues (osteophyte complexes, spurring, disc bulging, foriminal narrowing & blah, blah etc etc) are addressed. Can severe acute on chronic cervical radiculopathy cause nerve entrapment at elbow, forearm and wrist? Yes, I do pay a Dr. who should be answering these questions.Someone earlier actually stated that a disc at C5/6 issue was responsible for the myelomalacia. Assuming a Dr. explained that (please clone that Dr. who actually explains!) to you. I know there is difficulty with “causation issues” but isn`t it reasonable to state a long standing spine issue contributed to myelomalacia?
Thanks for being the one place to go to discuss myelomalacia and day to day dealings.
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Web Pixie | February 8, 2013 at 10:12 pm
There was a lot of frustration getting this diagnosed. The most frustrating were the doctors who would just stare at me when I described my symptoms. Even more frustrating, one said he would “fire” me as a patient if I kept coming in upset and complaining about the symptoms and how nothing was being done to address them.
Also frustrating, but less so, was that it took bits and pieces from visits to 3 or 4 different doctors to really understand what was going on. The neurologist I was referred to showed me an MRI image where he pointed out a bulging disc and a dark mark on my spinal cord right next to it. I said to him, “That looks scary.” He shrugged his shoulders and said something like “I don’t know,” or “maybe.”
Although he did refer me for a surgery evaluation, he didn’t tell me specifically what my diagnosis was. That wasn’t done until after I had the disc removed – 2 doctors later. That doctor, who was the surgeon who removed the disc, spelled the word “m-y-e-l-o-m-a-l-c-i-a” for me but he didn’t tell me what it was. The only definition I could find at that time was that it was a “softening” of tissue.
It was not until about 3 pain specialists and many, many months later that I found one excellent physician who asked me, “Has anyone actually told you yet that you have a spinal cord injury?” I was shocked! Of course, no one had! I was lucky even one of them said my problems were caused by myelomalacia, it would seem, much less tell me exactly what that meant.
In addition to telling me what was going on in plain English, she also set about ordering more tests to see if the continuing problems with my hands and wrists may be due to nerve compression elsewhere – in addition to the myelomalacia and/or cervical radiculopathy. As it turned out, some of it might have been but the main cause of is tall was the myelomalacia.
Until then, I had believed that a spinal cord injury only meant the most severe kind. Since then, I’ve learned that there are maybe 5 stages of severity – if that’s any consolation. It was for me.
I agree with you, the doctor that explained things should be cloned! She has sinced closed her private practice and joined the VA – good news for our military veterans but sad news for the rest of us.
In answer to your questions, it’s probably not unreasonable to state that long-standing spine issues would contribute to myelomalacia. In my case, I believe the actual damage occured when I tripped and fell one day. The bulging disc was already there, but the fall made it hit my spinal cord. That last doctor, the one we wish could be cloned, believed that was likely when it happened too. It’s important to remember, thoght, that every case is different!
It’s also reasonable that a hand surgeon would not want to try to address issues with the elbow, wrist, etc., until the spine issues were addressed. Those symptoms could very well be the result of the neck issues! I know it was in my case. It might take awhile for those symptoms to stabilze enough for the hand surgeon to take another look, but either cervical radiculopathy or myelomalacia could produce the same symptoms as nerve entrapment might. The spine issues are potentially more serious, so it makes sense to have them addressed first.
Perhaps that hand surgeon would be the one to refer you to someone who could competently and safely address the neck issues? Your plan to push for a referral for that neuro consult is a great idea! Either way, I do hope you are able to get an appointment with someone who is able and willing to help – the sooner, the better.
Thanks for keeping in touch, Anne, and please continue to do so! Your writing sounds like your brain is functioning just fine, yet I still hope you’re able to start getting some good sleep! Best wishes to you …looking forward to hearing more about your progress. (Of course, you’re always welcome to share any roadblocks you may encounter too, as we all have – just hoping you don’t have to encounter any).
PS Thanks for your thoughts about Peter. It was, indeed, very sad news and a very great loss.
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Anne | February 10, 2013 at 1:57 am
Thanks for the explanation re: hand problems tying into myelo. & radiculopathy. Also for just the kind and patient tone – maybe we could clone you and get you a Medical degree 🙂 I almost forgot that health info could be related in a kind way! I will definitely keep coming back – not only for the superb info but the non judgemental support. I hate telling others I`m sick (or whatever) I just smile and say fine when asked – I bet most of us did until it wasn`t easily disguiseable any longer. Thanks for the smile on my face.
Anne
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DAVID E. BUTLER | February 10, 2013 at 4:45 am
The frustration is too much for me I can’t even stand to talk to ‘healthcare providers’ anymore (just go’na go quietly into the night i guess.) Beings how i can’t stand to do that song & dance thing, you know the just bow & nod with hands folded.
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John Collier | June 15, 2013 at 7:35 am
Your cervical problems can indeed cause nerve entrapment ,especially doesn’t one arm/ hand…….I have this also
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Autrey gutierrez | March 21, 2013 at 2:16 pm
I have never in my life blogged or chatted on a support group such as this however as I have been trying to wrap my brain around the reports coming in as of late I feel compelled to ask some questions in my quest for some understanding or resolution. Here is a synopsis of my story. I have had degenerative changes in my spine however without symptoms until I was rear ended back in June of 2011. It was not even a severe accident at least in the sense that it caused no damage to my car, however, My necked snapped forward and I felt a sharp pain extending down to my legs, so as a precaution I went to the emergency room to have it checked out and documented. A CT Scan was performed and the Dr. Who read the report said that my neck was a mess and she could understand how I had pain. I was treated with pain meds and sent home. Within the weeks days, weeks and months that followed I began experiencing symptoms at such an increasingly fast pace that I though that I had developed some kind of autoimmune disease such as MS. Within a couple of weeks I lost strength in my low back. I couldn’t bend over and pick things up. I began to have increased headaches and when I would sit at my computer at work, my arms would begin to ache and my hands and fingers would go numb. Within a couple of months I could barely walk when I would first get up after sitting without hanging on to whatever I could grab hold of in order to ease the pain and assist me in gaining stability. 2 months later at my daughters wedding I noticed that on the dance floor I had balance issues and trouble coordinating my steps. My shoes began to be too big for me and I began stumbling g and tripping. The fatigue was so bad that I spent my weekends just resting and was afraid to do anything that exerted too much energy because I needed to gather enough strength for the work week. By the end of October thinking it was stress related I went to my family physician who took me off of work. 2 weeks later I ended up in the emergency room because I stopped breathing and my husband had to perform CPR on me however all testing on my heart came back normal. I was referred to a neurologist who had seen me while in the hospital. I followed up with her and upon completion of my neurological exam which showed hyperreflexia of all my reflexes as well as heel to toe walking was substantially impaired as was other testing on my balance. She ordered an MRI which showed spinal cord compression beginning at C4 through C7. I was referred to a Neurosurgeon and in March of 2012 i which discectomy, spinal cord decompression and fusion of C4-C7 to prevent quadriplegia was performed. Continued balance, gait issues as well as hyperreflexia warranted a CT Myelogram which showed spinal cord atrophy and continued spinal cord compression. I have also not had a successful fusion which I have been told that with multilevel fusion (more than 2) has a greater than 50% chance of non fusion when done anterior (which mine was) and will need to be redone posterior. I just started reading and hearing about Myelomalacia. Although I have not had been given this as a diagnosis, my symptoms are such defined and I am curious as to whether or not myelomalacia leads to atrophy or vise versa. Does anyone know if this indeed indicative of myelomalacia and if so which comes first? I know atrophy means that part of the spinal cord is dead so the damage is permanent. Do the gait, spasms, fatigue and extreme brain fog issues which continue to increase (I already have a wheelchair for longer periods of ambulation) indicate that this is a progressive disease with potentially catastrophic outcomes? I don’t want to assume more to my diagnosis however I need to know how to gear up for the fight. I apologize for the lengthy post I just wanted to give a somewhat clear picture of where I am today. Thanks in advance for any information anyone can provide.
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John C, UK | June 7, 2013 at 8:03 pm
I’m afraid I cannot tell you anything you do not know, but from what you say I would be surprised if you do not have myelomalacia. I went to the doctors expecting I had no damage or a little minor damage …I was wrong …an MRI shows my neck too is a mess , a whole catalogue of damage and injury. I see the neurosurgeon on Monday. I have had the diagnosis but on Monday I get the prognosis. I have done some research and spoken to people who have had, and those who have declined surgery.I have also read other people’s case histories Unless death and paralysis are expected in the short term I shall be refusing surgery. Those of us with cervical stenosis and myelomalacia have drawn life’s short straw, at the moment my only symptoms are pins and needles in my L hand but I expect the symptoms to worsen….I am prepared for the worst….I can offer you very little in the way of positivity…..sorry to come across as Dr Doom but false hope is worse than no hope at all.
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Web Pixie | June 10, 2013 at 4:06 pm
I wish you the best, John. Everyone’s situation is different and you’re the only one who knows your own. I will say that mine did start with pins and needles in my wrists and then in my hands. I had no idea what the problem was and didn’t go anywhere to find out.
It was not until I tripped and feel in my own house one day that things changed for the worse …no, for the worst! I put off surgery and things continued to get even worse. The surgery really did help me but it took quite awhile before I was able to function somewhat normally again – but it did happen! At least it did for me. I’m sure I would be completely paralyzed had things continued as they were without the surgical intervention.
Still, as I said, everyone’s situation is different and you’re the only one who knows what’s best for you. Please keep in touch and tell us how you’re doing. I hope that whatever the recommendations are and whatever your decision is, that things go very well for you. What you said is certainly true: What turns out to be false hope is worse than no hope at all.
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John Collier | June 10, 2013 at 6:02 pm
Well web pixie……I saw the neurosurgeon today and the prognosis was very much the worst case scenario…..the choices are basically radical reconstruction of my neck which would..if succesful …leave me being not quite the same again or the very serious risk of debilitation…..the devil or the deep blue sea……I have some big decisions to make
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DAVID E. BUTLER | June 10, 2013 at 6:25 pm
John, Dave here. I saw one Friday, supposed to go (yea, ‘nother 7hundred) for MRI, already know mine is worse(inoperable)! I guess i’m go’na give Steven Hawkins a run for his money..lol… Why, they make us do this damn ‘dog & pony’ show ! Just ease my pain and quit the game…. Got neither the time nor the money (got time, not quality, but time, and sure not the money)! This ‘7 hundred’ a pop and at least three to go. What they try’n to put me in an early grave (snicker)… Can’t do this comedy act either, standing too long is bad for my health…. And the ‘Gilligan’s Island’ Three hour tour to see a doctor is ‘real’, real old…
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DAVID E. BUTLER | June 12, 2013 at 4:12 pm
Ya, having a spinal cord that looks like a ‘chewed-up’ drink straw (or sippy-seal, if ya got kids) “AIN”T GOOD”! After 2yrs I’m given doctors another try (the stress & games)… Can’t give up hope, don’t want to go back in a chair (can’t live long like that, not man ‘nough). Like I said, “When you’re dumb, ya got’ta be tough!”
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Web Pixie | June 12, 2013 at 7:40 pm
The devil and the deep blue sea – tough decision alright. There is always the option of getting a second opinion, I suppose. That’s what I did – partly because I didn’t like the idea of surgery, partly because I didn’t like the surgeon, and partly because I didn’t believe him. When I got the same opinion from a neurosurgeon I did like and trust, he gave me the save verdict but I STILL couldn’t make myself commit to having it done. It was not until a relative of mine, who is also a physician, advised me to have it done before I lost “even more function,” that I called the neurosurgeon and said I was ready. All tolled, it took about 3 months and I still wish I hadn’t waited that long – but that’s me. The purpose of this blog is only to share experiences and offer support to one another, not to advise. Maybe one of your choices will turn out to be a more shallow blue sea, eh? Let’s hope. We’ll all be thinking about you, so please keep in touch!
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DAVID E. BUTLER | June 12, 2013 at 3:54 pm
Well, I’m not Steven Hawkins either (money & support options), but doc. that screwed my head back (c/5&6) on told me “I’d never get out of the chair!”, well I did (before Mylo. though,. progressive, surgery not option)! There is ‘always’ hope, Doc.’s still don’t know what the mind can do….
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Web Pixie | June 12, 2013 at 7:48 pm
Hey, Dave! I really like your last comment there about how the docs still don’t know what the mind can do. Maybe some do but it would seem that most don’t – or maybe they just don’t want to say and be held accountable for saying such things. Who knows. One thing I do believe is that if I had a more pessimistic attitude about my situation back when it first happened, I would probably not be here today. Maybe trying to keep a positive attitude didn’t MAKE me continue to get better but it allowed me the possibility and the confidence to continue to try. I still wish none of this would’ve ever happened, but it did. I hope things continue to get better for you too. No matter what, though, I love your jokes!
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DAVID E. BUTLER | June 13, 2013 at 1:53 am
Like the Guy said,”I would shoot myself, But had to pawn my pistol!” Ya, Doc. in Fl. didn’t find the humor in it ‘course he wasn’t live’n with it….
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Web Pixie | June 12, 2013 at 8:03 pm
I think myelomalacia means a softening of the spinal cord tissue. I’m pretty sure it’s permanent but I don’t think it’s necessarily progressive – that is, it doesn’t necessarily “spread” but I’ve also read that sometimes it can. I thought atrophy is something that happens to a muscle when it’s no longer used or when the nerves that make the muscle “work” can no longer send it signals. I have some atrophy in my hand between my thumb and index finger that one doc told me was the result of the myelomalacia.
The things you wrote about your symptoms sound so familiar, Audrey! The gait, the spasms, the hyperreflexia, everything. I wish I could offer more in the way of answers – I wish I had replied sooner! I don’t know how I missed your post! I hope you’re still “tuned in” here so you can let us know how you’re doing or, at least, can read these replies and know there are people out here thinking about you and hoping for the best for you.
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John Collier | April 27, 2013 at 6:19 pm
A few weeks ago I had an MRI scan at the recommendation of my doc. My symptoms were just tingling in the fingers of my left hand. I fully expected the MRI to show minor damage or nothing at all. When I got the results I was amazed I was still alive.
degenerate discs,central canal Stenosis, multi level , worst at c5/c6 , the central canal being severly compromised…and ……myelomalacia.
I have an appointment to see a neurosurgeon, which has been brought forward as the tingling is now in my whole left hand and right hand fingertips.I am distraught and devastated, and preparing for the worst
I am 58yo and had a bad sports injury over THIRTEEN years ago.
I am terrified of surgery…terrified of dying….I’m in bits
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John Collier | April 29, 2013 at 9:02 am
I had an accident playing sports in 2000,within a week I had unbearable pain in my left arm and shoulder,I has acupuncture,physiotherapy,cortisone injections,nothing worked only diconal took the pain away.Then after a few months the symptoms vanished only to return in the opposite arm two years later,this time the symptoms didn’t last long……..then about five weeks ago I had the pain return combined with tingling in my left hands fingers……my doc sent me for an MRI scan…..I honestly believed it would show little or even no damage…..when I saw the results I was horrified…..I couldn’t believe I was still alive…….reversal of the normal cervical lordotic curve……degenerate discs…..multi level central canal stenosis…….severely compromised central canal……most damage appears to be at c5/c6 both impinged because of bilateral foraminal narrowing …..and…..good old myelomalacia. I am 58 yo male….and despite being close to breaking down twice I am prepared for the worst. My appointment with the neurosurgeon was for June 10 but efforts are being made to bring this forward……I am in pieces
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DAVID E. BUTLER | May 5, 2013 at 7:05 pm
God Bless, at least you have a Doc. that has agreed to treat you… “DO NO HARM” means that if you get in the door they have to treat you… But when you have trouble getting one foot in front of the other, getting one in the door presents a problem….
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John Collier | May 5, 2013 at 10:59 pm
If I had to endure all this with no medical treatment I would not be able to carry on…….simple as that
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DAVID E. BUTLER | May 6, 2013 at 3:48 am
When, you’re dumb, yea got to be tough…. If I git any tougher I’ll have calluses on my butt ( no, not yet, anyway.And that ain’t even funny).. Don’t get me wrong, there are bad days…..
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John Collier | April 29, 2013 at 9:05 am
I didn’t realise I had already posted on here ?,…….could be my condition……but probably not
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John Collier | June 12, 2013 at 8:28 pm
There are some case histories on here that many if not all of us can relate to,it would be very helpful to many of us , if not all of us again,if you have contributed on here in the past if you could update us on how you are now
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Web Pixie | June 12, 2013 at 10:46 pm
There are other “articles” on this blog. Perhaps there are updates in the comments following some of them. The one titled “I don’t know much, but…” has several comments. Perhaps some of those comments include updates as well. Best wishes!
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Anne | June 13, 2013 at 7:56 pm
I haven`t posted for awhile but I`m still trying to find treatment for my continuing and varied symptoms. I`ve received the following diagnoses: RSD, stroke, MS, cubital & carpel tunnel,CRPS, & double crush. Recommendation for cervical disc surgery & removal of clusters of osteophytes,. Meanwhile other Dr.`s have said further surgery would be “starting an avalanch” My last consulting neurosurgeon at least acknowledged the presence of myelomalacia, however, he said the surgery is meant to retain arm/hand function and “would not have any impact if the main cause of symptoms is myelomalacia” I had hoped surgery would at least halt symptoms progression. Wouldn`t discuss myelomalacia beyond saying ” yea, you`ve got it, but I can`t fix it”. So, once again, I got no information on what to expect in the future and learning what I can do to slow down the awful effects and save what functions I still have. I`m losing the small amount of faith I had in Dr`s very quickly. This game Dr`s play seems to be about how they can make a buck off of you and the health of patients or any real concern FOR patients is not in their playbook. Every Dr. I have seen insists on taking X Rays in their office, that day, even if you had one the day before! That is their cha ching service. I have run out of providers in my area and didn`t find 1 Dr. who I trust and had confidence in. It`s all very demeaning. Thanks for letting me vent!
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DAVID E. BUTLER | June 14, 2013 at 4:18 pm
Jez, girl. I don’t know what ta say…After two years of ‘not’ deal’n with doc.’s, I broke down (almost pasted-out make’n chix salad) and started the ‘Doctor Dance’ again (git MRI ,”I can’t help, But come back and see me again, before I send you to see ‘another’ Associate of ‘mine’! [ what’s this need another 7 hundred?!] ” Do they really care or are we just a ‘cash-cow'( no pun intended, mooo…)! Part of ‘their game’ is the Federal medicare system, it’s setup, Doctors don’t get money for counseling, just for testing… Vent at will!!! Don’t nobody else care about us but us…. Now you know why I call it “The Hypocritical Oath” (What part, “DO NO HARM”, doesn’t mean do nothing!)
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John Collier | June 15, 2013 at 7:47 am
Your despair seems similar to my own……despite having known tragedy and heartache in the past I am at the lowest point in my life . Having done much research involving many case histories I can offer you little in the way of encouragement .I am sorry to come across as so negative,but consider myself a realist
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Sparky | June 16, 2013 at 8:07 pm
Hello, Anne. It seems what your doctor said may be correct but not stated in as sensitive a way as it could’ve been. From what I understand, myelomalacia can’t be fixed but the damage it is causing can be stopped if the cause of the myelomalacia can be removed. I know that sounds like a lot of double-talk, so I’ll try again with an example.
My doc ordered an MRI and then sent me to a surgeon because of what the MRI showed. The heartless surgeon then told me, “The surgery you need won’t get rid of your symptoms. It will only stop them from getting worse.” Of course, I didn’t want to believe him and I resisted. What he said after that only made things worse: “If you don’t have this surgery today, you’ll be paralyzed before the end of the weekend.”
I didn’t believe that either, so I left in search of a second opinion. The second surgeon told me my diagnosis was myelomalacia but he didn’t explain what it was. He only spelled it for me, but he did show me on the MRI what the surgery he proposed would do. There was a mark on my spinal cord and a bulging disc right next to it. He said that if the disc was removed, it wouldn’t be there to bump on my spinal cord anymore. I asked him about what the first surgeon said about being paralyzed and he just said, “Well, you’re not paralyzed now so you must’ve been doing something right since that appointment. Still, it could be bad if you were to fall or get in an accident or something.”
Then I asked him about the likelihood of improvement with or without the surgery. He said that without the surgery, he really couldn’t say. As long as nothing more happened to cause the disc to get worse, maybe the symptoms wouldn’t get worse either. (Although, he pointed out, that I also had cervical spinal stenosis so the chances were that the disc would at least occasionally bump on the cord with the spinal canal being so narrow.) He said that with the surgery, I might see some improvement over the first two years or so but nothing more after that.
That still didn’t convince me to have the surgery but at least I felt like he was being straight with me and not trying to scare me into having my insurance company pay for his next vacation like the first surgeon made me feel!
Over the next couple weeks, I started to develop more symptoms. So, scared as I was, I called him back. It still took a couple of false starts and a few long conversations with him on the phone (with a list of questions in front of me) but, thankfully, he was patient enough to accommodate my apprehension. He’s probably very rare in that regard.
It took more than a couple years to get to where life seemed somewhat normal again but that’s what happened: The surgery didn’t make all the symptoms go away but it apparently did stop them from getting worse by taking away the cause of the damage (the damage being the myelomalacia). He couldn’t undo the damage but additional damage was prevented. Plus, the first surgeon was wrong – I didn’t get paralyzed by waiting and my symptoms did eventually improve after surgery. It took a few years but, while the symptoms didn’t go away entirely, they did improve.
I will also say that there many other doctor visits before and after all this. At some point, there were tests done for MS and for other things but I don’t recall the specifics. At one point, I was led to believe that some of my post-op symptoms were like those of MS and that maybe I did have MS, but turned out not to be the case after all. At various, I thought I had carpal tunnel syndrome and so did some of the docs because of the pain in my wrists. Some very painful tests (nerve conduction studies) showed that not to be the case. Those test were repeated a few times over the years and each time the results showed the pain was the result of the myelomalacia.
I hope this helps at least a little bit, Anne. Best of luck to you.
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DAVID E. BUTLER | June 17, 2013 at 4:57 pm
Ya, Sparky I had that ‘conductivity test’ done, when they hit the point of my neck fusion, Boy, it was like I had just broke my neck again, “If, I could have reached the guy do’n the test I’d a killed him! It hurt so bad!” And no, no carpal… So far they’ve not given me an operation option, I think it’s more of a ‘money thing’, more then a ‘help or not thing’! I’m sorry to say….
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Web Pixie | June 19, 2013 at 2:01 am
I could write a couple horror stories about those tests but I’ll skip it. The last time I had one done, it wasn’t as much of a horror story but only because of the doc who did it that time – and maybe because I was expecting the worst.
I keep thinking about your situation, Dave – don’t you live in North Carolina? I have a friend there who was “between jobs” when she blew out a couple of lumbar discs. She was still able to have the surgery she was told she needed – although they wanted to throw her out of the hospital almost as soon as she regained consciousness. She lives in Raleigh but she had to go to a different town for the surgery. I know you live in a different part of the state, but I keep hoping things work the same state-wide …for your sake!
I reread what I write here sometimes and it could sound like I’m some sort of cheerleader for having surgery. That is so much NOT the case. There are so many variables, not the least of which is the surgeon recommending the surgery. On the other hand, some things are mechanical – like a disc bumping on a spinal cord that’s only going to cause more damage unless it’s gone. Right now I don’t offhand recall what caused your myelomalacia, Dave, but I do keep hoping there’s a way for you to get what you need to give you relief and happy times.
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DAVID E. BUTLER | June 19, 2013 at 3:14 pm
Pixie, I went to ‘Duke’ (go away,kid ya bother me! pretty much). This week I went back to the one Doctor (a new one, after 5yrs, without) here on the coast (second visit same Doc.). “Amazing”, that’s what he said about how I was living in ‘my’ condition…Du..hu… The ‘medicare system’ is so messed up that for him to get what he needs to get paid from them (medicare) he had to see me twice just to tell me ” I can’t help you see my associate!” I, couldn’t even get them to up-grade and give me a ‘T2″ MRI for the Myelomelacia (soft tissue damage), because they have to do the Basic first (double-billing, same outcome, I still need the ‘T2’ for brain & C5/6). The fact that I know this is so frustrating, the amount of undue stress that there is in just getting ‘care’ these days, is why I just want to stay locked-up and just waste-a-way….. When I got home I crashed for a five hour ‘power nap’ ..lol.. But you can’t tell anyone what it’s like ‘they think it’s all in your head’… God, I wish it were…. Five minutes here do’n this and I have to lie down now… “But I’m just imagining this!” As I huddle in my quite solitude..lol.. got ta go… talk at ya later..By.. pixie..
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DAVID E. BUTLER | June 16, 2013 at 2:51 pm
So, how is medicine over there, it ain’t that great over here (“you’ve no money, we’ve no time… AMA) I, jest and say, “They better not give me a ‘line of credit, and then tell me I’m terminal!! There will be One Hell of a ‘Living Wake’ …. God Bless, and Hang in there.
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seshu | June 27, 2013 at 5:09 pm
Hi, bike accident an year ago left me with herniated discs at C4-5 and C5-6. Neck pain and arm pain went away after a couple of months. Been feeling burning in my arm since a month and now I am diagnosed with Myelomalacia at C5-6 (9mmx5mm). I am scheduled for ACDF at C4-5 and C5-6 in a week. My other symptoms currently are sudden jerks in the arm and chest. I am really scared of this term – MYELOMALACIA. Please help. Will it worsen with age? Will it stop at its current stage after the surgery? I ‘m 32 and I feel like it’s already the end. How long will it be before paralysis sets in?
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John Collier | June 28, 2013 at 12:11 am
We are all just sufferers like yourself…..many of us( including me) feel as you do…….you should ask your doc and surgeon for their prognosis. However this doesn’t mean we don’t feel for you cos we do,we certainly empathise. I myself am on the waiting list for the same surgery as you,it is my belief that this surgery is being carried out to prevent further deterioration of your condition and its symptoms,including myelomalacia …..but I only know what I’ve read on here,and the the little information I learned whilst studying injuries in Sports Science at BTEC level. I will not give you false hope though,every single person who has ever commented on here and similar web pages appreciates how very serious the condition is and none have ever tried to minimise it.
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seshu | June 28, 2013 at 2:44 am
Thanks John for the reply. I initially met a Ortho&spine surgeon and he said myelomalacia’s behavior is unpredictable and that I can only pray that it doesn’t get worse. He said without surgery i am certainly a gone case. I then met a neurosurgeon who also recommended surgery but said there is a 80% chance that it will not get worse post surgery. I am not able to find any information about this anywhere except on this blog. Most of the comments here are very scary. I don’t have some one to take of me if i end up in a wheel chair. I read about your condition and yours seems very similar to mine. How long has it been since you had myelomalacia?
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John Collier | June 28, 2013 at 8:05 am
Here is one of the very rare occasions I can give you some hope. I have probably had myelomalacia for over 13 yrs since a sports hall injury in early 2000…….so it didnt paralise or send me to Glory in the short term and I have also communicated on here with many people,read many more case histories,and I have never heard of any fatalities in the short term or paralysis coming on quickly. From what you have told me your damage and condition is serious,but the surgeon ( like mine) seems optimistic about the outcome of the surgery.i have come across people who have been dissapointed with surgery but I suggest you go to YouTube and see some of the people who have had the surgery ,talk of their experiences……all are progressing incredibly well
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DAVID E. BUTLER | June 29, 2013 at 12:12 pm
John, thoses sites you talk about ei: utube . If you would what are the links, I could use some good news..
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Web Pixie | June 29, 2013 at 7:04 pm
Hang in there, seshu, and best wishes for your surgery. It might be awhile before you can let us know how you’re doing but please keep in touch. I can assure you there are many of us who will be thinking about you this week with your upcoming surgery.
It’s true that many of the comments here are scary and myelomalacia is certainly no joke. The residual symptoms are not what we would wish for or wish onto anyone else, but I personally prefer having them to what would likely be happening had I not had the same surgery you’re scheduled to have this week. I wish an even better outcome for you …much better! The way you describe your current symptoms, you could turn out having the best outcome of all of us …not that it will seem that way at first. Please keep us posted how you’re doing.
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DAVID E. BUTLER | July 1, 2013 at 3:42 pm
“Unpredictable”, I’ve ‘never’ had one of the doc.’s tell me that.. They just blow it off like I’ve nothing to be concerned about (ya,right!)! Down here, you have to ‘go-a-long to git along’ or the Doctors ‘drop’ you… So, I don’t know what to believe anymore… I, guess I’ll just outlive the %$#@&*((( ard’s..LOL…
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seshu | July 2, 2013 at 2:21 am
Ya, that’s how the doctors are here. They don’t have the time or patience to comfort the patients. I am from India (Hyderabad) and good doctors here see 10 patients in an hour. My neurosurgeon calls in 2 patients at a time …. LOL. Anyway, my surgery is fast approaching (July 4th) and my heart is already beating faster than a lawnmower. Keeping fingers crossed. Planning to watch some movies these 2 days. Terms of Endearment?? any suggestions?
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John Collier | July 2, 2013 at 1:23 pm
Sushu………I am sure you will find some good movies to watch….but nothing too serious….and nothing featuring surgery of any kind.
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Web Pixie | July 2, 2013 at 4:18 pm
That will be Wednesday night where I am …will be thinking about ya’!
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Web Pixie | July 4, 2013 at 3:49 pm
I know you won’t see this for awhile. I hope you’re resting comfortably right now after your surgery earlier today. It’s about 9:15 Thursday evening where you are right now but only 10:45 in the morning here. So your surgery was scheduled for when it was the middle of the night here, but I was thinking about you all evening. Not that those thoughts would cause things to go well, but it’s nice when you know someone is thinking about you when you’re going through a stressful time. I’m sure I’m not the only one who was thinking about you then and hoping (or praying) things went exceedingly well. Please let us know how you’re doing when you’re up to it. 🙂
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John Collier | July 4, 2013 at 7:07 pm
Here’s hoping all went well with your surgery…..we are all birds of a feather here…………..damn you myelomalacia !!
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seshu | July 6, 2013 at 2:54 am
thank you all for your prayers. I am back home after my surgery (C4-6 ACDF). Everything has supposedly gone well. i still have mild numbness and sudden jerks in my arms. Doctor said things will only get better. I don’t have any pain though (except the incision pain) probably because of the meds. To all of you who are going to have this surgery, i feel this is nothing to be afraid of. I stayed in the hospital for 24hrs only post-op and i then travelled 20miles to get home.
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DAVID E. BUTLER | July 6, 2013 at 3:36 am
Ya, my ‘latest’ MRI, I have & count them seven (c/2– T/1)bad & worst-est, and we know that Doctors don’t like US ask’n Q/A.(they went to school we just are!)… Go back the end of the month (hopefully not the END!) Forgive me, Sarcasm is what I got left…B|
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Web Pixie | July 6, 2013 at 7:19 pm
Yay! Great to hear from you, seshu! Glad to hear everything went as expected and that it all went well. Here’s to a speedy recovery (uh, just don’t rush it) 🙂
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seshu | July 6, 2013 at 9:56 pm
Pixie, i am having trouble sleeping. Numbness and tingling is shooting up if i lie down. I am not sure if this is normal. I am having trouble with right hand as well which was absent pre surgery. Suddenly, i feel like something has gone wrong. Would have rushed to the NS but it will be 2 more days before i can catch him. How was your initial recovery? please help.
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Web Pixie | July 7, 2013 at 12:12 am
The biggest thing I remember about my initial recovery was that it seemed like I was sent home too soon. The surgery was at 4 in the afternoon and I was sent home early the next morning after they made sure I could get around with the walker they sent me home with. I was still loopy from the anesthetic but I made it up and down the hall so they sent me home.
I don’t remember too much after that except that I was scheduled to come in for outpatient physical therapy 2 days later. The surgery was on a Friday and the PT appointment was early Monday morning. My husband and I both thought, “No way! What are they thinking!”
I cancelled that appointment and made another one at a time when I could get a ride. No way I could drive there! It was a pretty sad situation, at the time. I could barely stand up by myself. They had me laying on a large table while I waited for the therapist. She had to put a belt on me to walk me between some parallel bars.
Things did get better fairly quickly though. I remember seeing a woman on that same table the day I was released. They were having a fire drill and there was nothing she could do. She looked so sad that I’m sure she felt the same way I did that first day.
The therapist suggested I get a cane and taught me how to use it. That was much better than the walker, but a cane? She said it wasn’t so much because I needed it to walk as it was a warning to people around me to keep their distance (kids on skateboards, for example).
It’s good that you’re seeing the NS in 2 days but it would be better if there was someone, like a nurse maybe, who you could call to make sure what’s going on isn’t unexpected for your case. I still did have lots of pain, especially in my right hand too. I still do, in fact, but the gabapentin I take makes it manageable enough that I can type this.
In contrast, though, I believe I did have the same pain before the surgery. The fact that you didn’t is concerning. I did spend a lot of time on the phone with my NS’s nurse …as well as their answering machine. She always called back and was reassuring – or else tried to move my next appointment up if she had concerns. I felt like a pest but she always reassured it was okay. I do hope you have a resource like that available, somehow, some way.
That’s the most I remember from the initial days. I didn’t think I’d ever get better. Slowly, the symptoms lessened but the physical therapy exercises they sent me home with helped the most. I often wish I had tried harder to do more of them there at the beginning.
Please keep me posted, seshu, and let me know if there is anything I can do to help (even from half a world away). 🙂
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seshu | July 8, 2013 at 12:44 pm
Pixie, thanks for your reply. This is the only place where i find a prompt reply. I am feeling slightly better now. 2nd day was the worst though. Numbness and tingling has gone down considerably when compared to the 2nd day. Most difficult part of my recovery is my attitude. I am an extremely paranoid person and i am not able to digest the fact that i have something as serious as myelomalacia. I don’t have enough courage and my outlook is always like ‘what’s the point?’. I already imagine i have respiratory issues though i definitely do not have. May be i should stop reading a lot on the net about this. Myelomalaicia for me is at c5-6. Is there a possiblility of respiratory issues to set in even before any issues with arm/leg weaknesses.
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john c | July 8, 2013 at 1:17 pm
Seshu……..now you have had your op your chances of complications from myelomalacia are reduced.The only person I know to have died from respiratory failure was someone with very severe symptoms who had been I’ll for nearly 20 yrs. Even a pessimist like me thinks your chances of a near total recovery is very good….and I have studied and researched many case histories……….
Damn you myelomalacia !!!
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Web Pixie | July 9, 2013 at 3:44 am
Those are good questions for your doctor, seshu, but do I ever understand how you feel! I was sure my life was over when this happened to me. Mine is at C5-6 also. The change from how things were before was so drastic, I just wanted things to go back to how they were. I was able to function, at least somewhat, after a few months but I’d get what felt like shooting waves of electricity through my arms and legs at times. I started worrying about the breathing too, at times, and the best thing really is to ask your doctor about it. He/she can check things out and make sure there’s nothing wrong or do something about it if there is. I hope you get to see your NS today! I’ll look forward to hearing how it goes. Keep us posted!
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Web Pixie | August 26, 2013 at 2:56 am
Hi, seshu …I hope you get this. Been thinking about you and wondering how you’re doing! I hope things are going well.
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John Collier | August 26, 2013 at 11:32 am
Yeah…..I believe it’s all a part of the healing process, I do the excercises shown me by the physio, and I was kinda surprised when the pain came back worse than ever….however it did expect some symptoms to show themselves even though I did wake up from the surgery symptom free….I’ll keey you all updated, and it’s always v. Good to hear how you all are doing.
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Diane | June 28, 2013 at 3:07 am
Seshu, I just had an ACDF on March 20th. The surgery went well however I have not had any positive change in my symptoms. I actually feel like they could be getting worse. I had chronic spinal cord compression which gave me myelomalacia. My symtpoms started as tingling in both hands just the thumb and fingers. I was misdiagnosed and had bilateral carpal tunnel surgeries. I say misdiagnosed only because the emg/nerve conductor study always only showed border line carpal tunnel and at the onset of my symptoms is said no carpal tunnel. My symptoms progressed including burning, tingling, numbness combined with pins and needles too. I have all of those sensations in my hands and half way up my forearm. The sytmpoms shoot up to the elbow however at this point they are only constant from my hands to mid forearm. It’s like the symptoms are growing up my arms. I have pain in my hands when I do things. I have some right shoulder pain and that dull ache in the middle of the back comes and goes. Surgery went well. I am 3 months post op and my fusion is good so far. I have new bone growth. The Neurosurgeon used a peek cage. They use your bone that they removed, crush it up and mix it with your blood, and a synthetic material. When I visited with the Dr. yesterday he referred me for another emg/nerve conductor study. He wants to confirm my symptoms are only coming from my neck. He said tingling and numbness never killed anyone. I imagine unless you have those feelings 24 hours a day 7 days a week, you wouldn’t really understand how frustrating it is. I try to keep things in perspective and I’m thankful that I am not paralyzed and I do still have use of my hands. Good Luck
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John Collier | June 28, 2013 at 4:21 pm
I am pleased your fusion went well…..I am awaiting the same op….I have tingling in my L hand fingers virtually 24/7 so I understand your frustration.
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Diane | June 29, 2013 at 12:21 am
Thank you and best wishes to you on your surgery.
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seshu | June 29, 2013 at 2:51 am
Thanks John and Diane for the info. That will certainly help calm down my nerves. All the best on your surgery John. I hope i will be updating soon after my surgery on July 4th.
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DAVID E. BUTLER | June 29, 2013 at 12:08 pm
I, too wish the best… I have a new Doctor Appt. today, about the ‘nervous & jerky’, I don’t know if they ever stop..lol..B|
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Web Pixie | June 29, 2013 at 7:14 pm
Hey, Dave! You have a doc appointment on a Saturday? More likely, I don’t have the clock set right on this blog. Either way, I hope this doc is helpful. I’ll be thinking about ya’ (as always)!
Oh, turns out my friend in N.C. has to travel quite a distance for the issues with her back. She always needs to find someone to take her because it’s too far to go on her scooter (motorbike-type scooter). Then, last week, someone backed up at a stop sign and ran over her on her scooter. Things were bad enough (broken ankle) but they would’ve been a lot worse had the minivan that hit her not jammed the scooter’s horn on.
Please give us an update after you see the new doc. Hope he’s the most helpful one you’ve seen yet!
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DAVID E. BUTLER | July 1, 2013 at 3:31 pm
Well Pixie. Old Joke,”Would shot myself, but had ta pawn my pistol!” Doc., “just give him a pill and send him home.. Make an appointment for him again…” what is the old song, “Money..money..money..” S.O.B.’s I’m sooo tried…. of the bs… B|
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Web Pixie | June 29, 2013 at 7:08 pm
I wish you all the best with your upcoming surgery, John. How soon do you plan to have it? Seems this is the deep blue sea choice? Pre-surgery is like living with the devil while post-surgery there’s a good chance you’ll be able to swim in that deep blue sea. Let’s hope, eh? I and I’m sure many others will be thinking you with your upcoming surgery. Please keep us posted on how you’re doing.
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Web Pixie | June 29, 2013 at 6:53 pm
Congratulations that your surgery went well, Diane! Many of us do understand how it is to have those sensations 24/7. What might be good news to you is that, while 3 months is a long time, it’s still early in the healing process from the surgery. You have a really great attitude. Hope to hear more from you!
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John Collier | June 29, 2013 at 7:11 pm
From what I can gather,especially from your detailed symptoms, i believe you can expect to see improvement.
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DAVID E. BUTLER | July 1, 2013 at 3:35 pm
Di., if there is a Supreme Being may He be on your side in this and all things.. Well wishes. Dave.
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Web Pixie | July 2, 2013 at 3:00 pm
I second that!
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John Collier | June 29, 2013 at 2:45 pm
David………I cannot give you much good news,if you type in cervical spinal stenosis in YouTube you will get a few short videos of people who have had anterior compression done,but you have already had this done……..you only have to read this page to see that every single contributor regards myelomalacia as a devastating diagnosis. And its the same for all the similar web pages on the subject.The MRI showed my spinal chord was full of it,but the doc seems to think compression and fusion is my only hope.He said without it I would lose the use of my legs ,become paralysed and have a wheelchair existence,when I told him my symptoms were mild and I had survived over 13 yrs with this ,he told me it had finally caught up with me. I have done a lot of research and have decided to have the surgery but it was a close call, I almost declined. The one thing for sure about myelomalacia is that without treatment,and usually drastic treatment at that,it will not go away, the symptoms will not disappear,though they may from time to time ease….as you know I am no doc but I would be very surprised if you remained as you are,let alone improve,without further medical treatment
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John Collier | June 29, 2013 at 7:28 pm
Actually…I made an error there…myelomalacia does not go away , as we all know……..what I meant was its symptoms will not reduce without treatment…….which again we all know.
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DAVID E. BUTLER | July 1, 2013 at 3:26 pm
Well, I just got back from another ‘saw-bones’, “Give him a pill and have him come back.” Ya, got no good news here either… If, I win the ‘Lotto’ or become Bill Gates over nite maybe they would operate! Here ‘medical care’ is what your back account is… One Doc. said that, “He was amazed I was do’n as good as I am..” Well ain’t that so comforting…. No, I didn’t tell them off, (I have scares on my tongue, from bite’n it so much.)!
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Web Pixie | July 2, 2013 at 2:59 pm
My neurologist did an MRI last year because I was noticing some “clonus” in one foot. His first words when he walked into the office were, “Well, it’s not as bad as I thought.”
I thought, what the heck – that’s a fine how-do-you-do! He gave some low-dose baclofen and cut back on the higher dose neurontin. There’s more to the story, but the drugs – or maybe just time – something, anyway, seems to have helped with the clonus …at least for now. I just thank heaven when even the smallest things seem to get better. Then I pray they stay that way.
Hope bigger things get better for you before you get more scars on your tongue! 😀
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DAVID E. BUTLER | July 2, 2013 at 4:26 pm
Ya, I got a kick out of what ‘the’ new Doc. said,” I’ve ‘found’ this drug works better for nerve pain.” God, I want to tell him, “Just how much nerve pain have you had to tell ‘me’ what works best!” but we all know”The Doctor knows more about it then we do…” I’ve juggled just about all the med.’s they make over this 13yrs and ya’ll know some work for one don’t work for others ! We didn’t go to school for this we just live it ! I’m still under the delusion that ‘we’ ( healthcare provider & patient lol ) are supposed to be work’n together in ‘our’ treatment (and or lack of). Not a good day, hope yours is better.
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Web Pixie | July 3, 2013 at 12:32 am
Hope tomorrow is better – for both of us …well, ALL of us. Went to physical therapy today and I’ve been having trouble with this one exercise. I’m supposed to feel a stretch and I don’t. She told me “maybe you shouldn’t do that one anymore with that neck fusion. You’re really yanking on your head and – don’t worry, you’re not hurting anything – but maybe you shouldn’t be doing it with that fusion.”
Well, it’s the pain in the neck from a short jeep ride last February that has me seeing her. I’m glad she told me to quit and I’m glad I haven’t been very good about doing the exercises at home …AND that this is only my 3rd visit. Still, I wish she didn’t have me doing it at all if she had any concerns about the fusion.
Oh well, you’re right. We just live with it and hope the providers realize we’re going home with it while they’re on to the next patient. Some days are bound to be better than others, which is true for everyone. I’m happy for the good days and, overall, today wasn’t really THAT bad. Just worriesome.
I’m sure you HAVE been offered almost every drug in the book over the past 13 yrs, Dave. Glad you got a kick out of how this new Doc told you what he’s “found.” Sometimes all you can do is smile at their efforts to be helpful. Sometimes, they really do help.
Regardless of evidence to the contrary, I’m determined to believe that the partnership isn’t a myth …it’s just hard to find and sometimes it’s something both the doc and the patient have to grow into. That’s my glass-half-full spin on it for today, anyway. Hope things get better as he gets to know you, Dave.
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DAVID E. BUTLER | July 4, 2013 at 7:35 pm
Pixie, I hope you and all have a Great 4th! I have to go out in the HEEt and cook the ‘un-grateful’ ones a steak… If, they only knew what the heat is to a ‘spastic-quad’ (Na, they don’t care! Just git it right.), over heat’n it not a happen’n thing… But, I do Like a good ‘wood-fired’ steak… Best to ALL. Dave out..B|
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John Collier | June 29, 2013 at 7:25 pm
Web Pixie……I have been told my surgery will be within 2 months……I have the cervical spinal stenosis and myelomalacia…..my surgeon is quite confident the results will be good. I am so pleased I found this forum. Only those of us with this malady and have done our homework really know how seriously ill we are, and I am pleased that everyone on here ( so far) are realists. Even though one of us (Peter) has passed on,it must be remembered that he was without doubt the most severely affected of us all and he had suffered with this condition the longest. I personally find your posts the most encouraging,whilst others probably see me as the Dr. Doom of the forum. As you know there are good days and bad days……a bad day is like being on Death Row…….today was a good day.
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Web Pixie | June 29, 2013 at 8:12 pm
Glad to know today has been a good day, John. Here’s to many more and even better! 🙂
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Web Pixie | June 29, 2013 at 8:13 pm
PS We all sound like Dr. Doom sometime.
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DAVID E. BUTLER | July 1, 2013 at 3:17 pm
Hey, it’s rained here for over a week.. Sun ain’t shine’n and doesn’t do a ‘body’ good… I’m still here so all’s well what the hell… lol..
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Anne | July 3, 2013 at 3:19 pm
Hi to all,
I just refreshed my memory by reading old posts. One of my post from 4/12 relating symptoms- I had forgotten all about, especially since my symptoms changed. I think I actually block out periods of severe pain. When I had my EMG/NCS I totally blanked out. When I read the EMG report he stated I was not following instructions and I realized it was because of the pain. I had no memory of the middle of the test, just meeting the Dr. and leaving his office. It was very strange cause when my “ride” to the appt. said “how did it go?” I said I don`t think he used the needles this time! No meds or anything else explains this memory loss. Another occasion when my sister was present, I had extreme burning pain in both arms. At a later Dr.`s appt. I told the Dr. I didn`t have any pain, my arms just went numb on me. My sister had to correct me because I had blocked that episode. I think the brain jumps in to help me cope.
My newer symptoms have moved from severe pain to just loss of function in 1 hand, and visual disturbances – my vision, for no obvious reason, gets extremely blurry- like an old TV where the picture “rolls” repeatedly. These episodes last from about 10 seconds to 1 to 2 minutes. I had these disturbances after my original injury and only very occasionally since. My “brain fog” is seemingly getting worse as it`s harder to do simple tasks that require more than 1 step.
I`m dealing with myelomalacia, but on top of that, since this was a work related injury I have to deal with the workers comp. system to get treatment. My insurance “red flagged” my spinal issues and denies payment since WC is supposed to pay for treatment. With WC they deny treatment because they don`t believe the repeated objective testing and 4 different physicians who agree the myelomalacia is a direct result of the accepted injury. It is a horror dealing with WC, so no Dr. will agree to oversee my case. My long time attending Dr. retired suddenly last Dec. and WC legally can ignore any recommendations coming from a Dr. who is not my attending. They have refused to accept the 1 Dr. who agreed to be my attending (too far away) so I have no Dr. to order tests etc. Since I have no current health problems according to WC records, they are forcing me to work a 40 hour week with a few, sketchy at best restrictions. I haven`t been capable of working for over 11 years, am totally deconditioned, and have many active dysfunctions, and no Dr. to advocate for me. No attorney will fight the WC powers because of their ridiculous requirements. So if (when) I can`t do the job it is goodbye health insurance and monthly income.
That felt good to vent – sorry it`s so long. Any suggestions would be greatly appreciated. Happy 4th to all.
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John Collier | July 3, 2013 at 4:26 pm
I am unable to offer you any suggestions as I don’t know much about American health care…..I assume your in America….BUT..if we’re you,I’d accept further surgery is unlikely to help even if it took place,regular exercise specially devised for you would be my path forward.
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Web Pixie | July 3, 2013 at 6:06 pm
It is funny how the brain jumps in sometimes to help us cope. Now if it would only solve all our other problems while it’s at it!
I totally empathize with your WC issues! Having not worked in so long, does your employer cover you with LTD insurance or maybe social security or have you just been on your own financially all these years? It seems an attorney who specializes in social security could be able to either help or refer you to someone who could – but it does sound like you’ve exhausted many avenues looking for an advocate.
Regarding your retired attending, don’t docs often have someone “take over” their patients when they retire? My primary doc quit the university where he was working and opened a private practice. When he did, the university sent me a notice to let me know this and to invite me to transfer to one of the other attendings in the satellite office where my original doc had worked. Technically, my doc had retired from the university before setting up his practice. Informing his former patients of other docs in that office was their standard procedure. Any possibility of something like that where your attending retired from?
I suppose there’s always the possibility of the bad news of going back to work turning out to be a painful blessing in disguise. I hate this possibility because I had to live through it and it was awful going through it …although things ultimately turned out well. If it turns out that you’re medically unable to work, for whatever reason, that might put you on a new medical path that doesn’t involve WC. Could that put you back on medical leave from your job so that you’re able to keep your health insurance?
Just some thoughts. Thanks for keeping in touch, Anne, and I hope there’s a silver lining for you here somewhere. Happy 4th to you!
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DAVID E. BUTLER | July 6, 2013 at 4:20 pm
Got to look’n a little harder at latest MRI (can only handle so much at once)”SYRINGOMYELIA” ‘SUGGESTION OF’??!!?, Damn, things just keep ‘getting better all the time’ (Beatles, Better).. What, next we go’na pull a rabbit out of our hat…. Jez, how dose one get to The Mayo Clinic & do they care… HAPPY 4th OF JULY…. TO ONE AND ALL….B|
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Web Pixie | July 6, 2013 at 7:26 pm
Maybe the fact that it says “suggestion of…” means it’s small or maybe an artifact. I supposed you’ve read this page: http://www.ninds.nih.gov/disorders/syringomyelia/detail_syringomyelia.htm
As for the Mayo Clinic, my husband keeps wondering the same thing. Let me know if you find out. (I suppose we could just call)
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DAVID E. BUTLER | July 6, 2013 at 9:58 pm
“MAYO”.Ya, when Hell freezes over….The ‘Ol’ Willie song, “You’ve got the Money…” B|
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Web Pixie | July 7, 2013 at 12:20 am
Well, that’s probably true. How was the barbeque, btw?
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DAVID E. BUTLER | July 8, 2013 at 4:54 pm
B B Q, what you some kind’a Yankee or something.. Grill’n is ‘hard & fast’ BBQ is low & slow… Any-hue, the steaks were good, thanks. Had one of them weird dreams, woke-up disoriented think’n it was the next day(scared the be-jeebes out of me!), never had one like that before… How are you so far… Be strong!
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John C, UK | July 8, 2013 at 5:34 pm
Did someone mention Yankees ?…even though I’m an Englishman, one of my ancestors was a very famous guerrilla leader in the War of 61…his name was William Clarke Quantrill.
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DAVID E. BUTLER | July 8, 2013 at 5:47 pm
Hey, there ain’t no Paula Deen here… I’z a jus pick’n…There was a ‘Butler’ that was hung for kidnapping one of the English Princes (I, don’t know if related or not, I didn’t look farther..lol..) All I know is how to cook.. And wasn’t it Joe Cocker that sang about, “Made Dogs and Englishmen!” I glade that their is still laughter to be found in this screwed-up world we live in, Better to be thought of as crazy, then not thought of at all… Well, I got to run now (a, right!) peace on ya…
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Web Pixie | July 9, 2013 at 3:49 am
Had BBQ brats and dogs and watched the neighbors’ fireworks. Pretty fun. Now it’s back to PT tomorrow, where I’ll be in trouble ’cause I haven’t been doing my home exercises. Glad you enjoyed the steaks!
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John Collier | July 7, 2013 at 12:07 am
We have each other…..We do indeed ….and it’s a good job we do.
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John Collier | July 6, 2013 at 7:38 pm
If you think myelomalacia is rare,syringemyelia is almost unheard of in humans and is invariably hereditary . I know cos I’ve had cavalier King Charles spaniels for years and its a big problem with them………take care…..remember we are all cursed on here….every one of us
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Web Pixie | July 6, 2013 at 11:52 pm
…and yet, we all have each other.
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John Collier | July 7, 2013 at 12:12 am
I would be very surprised if you have syringemyelia,very very surprised and I’m no medical man…..I have had cavalier King Charles spaniels for well over 20 yrs. and I have seen syringemyelia more than once….”suggestion of ” sounds like the medical jumbo jumbo for “taking a wild guess”…… Take care
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DAVID E. BUTLER | July 8, 2013 at 5:01 pm
‘Suggestions’ is what the report said, I damn sure never heard of it before.. And, didn’t pull it out of my hat… You sound like a Doc. now, I don’t make this ‘crap’ up. Radiologist said it, I didn’t… either way Dis’s are blown from C/2 & 3 To T/1 & 2 with the myelomelacia at 5&6 (you don’t even want to see the pic.’s, not good.) and hints through out…
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John C, UK | July 8, 2013 at 5:47 pm
sorry to hear your in such a mess…..and I really do wish you all the best, I don’t know why we should get this God damned awful thing…..I hope you have some good painkillers, I have Diconal, the best there is
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Anne | July 8, 2013 at 1:47 pm
Thanks for the suggestions. I have been unable to work post surgery because I could never get through a course of physical therapy with out a new injury. The disc above, below and in between the surgery site would herniate or it would set off pinched nerves that caused severe Lhemettes (electric shocks) through out my entire spine – with each incident taking a long recouperation period.. Dr`s would have to do a rather lengthy surgery at too many levels leaving me little to no ROM in my neck. They said just do what you can to keep in shape and don`t hurt yourself.. My permanent restrictions left me unemployable.Since it was a work injury I was shoved into WC, against my will, and have received their miserly benefits since. I tried to duck the WC system to get faster service because I was in pain and wanted help. But my insurance wouldn`t cover any treatment or tests and red flagged my file as a WC injury – not their problem. My retired Dr. referred me to a Dr. who doesn`t accept WC patients.
But now, since I don`t have a Dr. to set restrictions on paper, they consider me healed. It`s not like they are going to help me with a job – they just match me up on paper with a job that doesn`t even exist and terminate my benefits.I can`t get anywhere with out a Dr. and I`m still looking.. I guess I really just needed to vent! Thanks
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John C, UK | July 8, 2013 at 5:32 pm
we all need to vent Anne……or most of us ……we have all drawn the shortest of life’s short straws.
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DAVID E. BUTLER | July 8, 2013 at 5:51 pm
Ya, Anna work was my sanity (well, so much for that ‘wog’a…wog’a…).. Just hang in there, there are doors yet to be seen . Don’t any of us have the answers, they are out there if we just look..
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Web Pixie | July 10, 2013 at 6:28 pm
Well put: “…there are doors yet to be seen.”
Indeed there are.
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John Collier | July 10, 2013 at 7:14 pm
I got a letter from my neurosurgeon on Saturday ,asking me if I realised the risks and benefits of surgery…..I told him I did and I want surgery to go ahead ,as this is the UK it will be 2~3 months….WE ALL have to give ourselves the best chance possible,only us diagnosed with the big ‘m’ can understand our situation
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Web Pixie | July 10, 2013 at 7:49 pm
It’s a tough decision. It would be nice if they outlined the risks and benefits of the surgery side-by-side with the risks and benefits of not having it. That would probably not make the decision any easier, though, really. To me it probably would’ve looked like a surgery sales pitch …pretty much like it did when the first surgeon told me I needed it and that I needed it that day.
Now that you’ve decided, though, it’s tough that you have to wait so long. 😦 Please be careful so that you’re able to minimize or, better yet, avoid any further damage while you wait. Doesn’t make for a fun summer, but then the plan is to make all the summers to come SO much more enjoyable!
Best wishes to you, John. 🙂
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John Collier | July 10, 2013 at 8:00 pm
Many thanks for your kind words……of all the people on here my symptoms are the mildest……..by far. Though the MRI showed extensive and serious damage. I have the best painkillers available and a supportive family. I am definitely having the surgery and I don’t do too much that would make things worse,and after surgery I will be doing virtually nothing that could cause even the slightest strain
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Anne | July 12, 2013 at 12:53 pm
John, I`m happy to hear you have made a decision. It seems that part is the hardest, but once made you can focus your energy and don`t have to deal with all the “what if`s?” I too hope to be approved for surgery in the new future. Good Luck to you.
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John Collier | July 12, 2013 at 8:25 pm
Thank you Anne……I am very apprehensive about surgery but the surgeon made it very clear the outcome would be poor without it…so surgery it has to be………
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seshu | July 16, 2013 at 4:05 pm
John, all best on your surgery. I am sure everything will turn out fine. I am 10 days post op and had 1st appointment with my NS yesterday. I am doing fine at the moment with only burning in my arms. It’s mild and flares up some times esp while lying down. My NS has now put me on Gabapentin and he says i should be fine in a couple of months. I have no new symptoms or pain as of now. I had a C5 corpectomy along with c4-6 fusion. Pre op i was told it’s going to be only fusion but the NS went with corpectomy during surgery. Nothing i can do now. I hope the fusion goes fine.
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Web Pixie | July 16, 2013 at 4:51 pm
Seshu, I’m glad to hear things are going better. I hope the Gabapentin (generic Neurontin) works as well for you as it has for me.
At the risk of sounding too much like the “glass half full” person that I tend to be, I’ll share with you what I found when I looked up the unexpected procedure in Wikipedia:
“A corpectomy is a surgical procedure that involves removing part of the vertebral body (Latin: corpus vertebrae, hence the name corpectomy), usually as a way to decompress the spinal cord and nerves. Corpectomy is often performed in association with some form of discectomy.”
It could be that the corpectomy has given the damaged areas more room to heal and less chance to be re-damaged …or maybe it was to make it easier for the fusion to take hold. One would think, or at least hope, that the NS would only add decide to add something during surgery if it would enhance your recovery. MRI’s reveal a lot but there are many things that can’t be visualized until the surgeon can actually see it first-hand. I hope I’m not sounding overly cheery. 😀
It’s good to hear from you again. I’ve been thinking about you – wondering how you’re doing and how things went at your NS visit. Best wishes to you for the best recovery possible!
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Virginia Goner | January 4, 2016 at 4:43 am
What corpectomy cage was used?
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Web Pixie | January 6, 2016 at 5:00 am
Virginia, it’s not clear whether a cage like that was used in Seesha’s or John’s case. Perhaps they will post a reply to your question here.
In my case, there was a cage used for the discectomies at the lumbar and sacral vertebrae. The myelomalacia I have is at the cervical level.
The cage technology was interesting because they contained a sponge infused with a substance called ‘bone morphogenic protein” (BMP). What the BMP does is promote the growth of new bone and enhance the fusion process.
It’s been over 6 years since I had that fusion done. I recently had an MRI in that area and they appear as “spacers” between the fused vertebrae, or at least that is how the radiologist described them in the MRI report.
Best wishes to you!
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John C | January 6, 2016 at 9:09 am
I do have a cage fitted and have had a double discectomy ,I had it done in Aug 2013. I can strongly recommended the myelomalacia facebook group.
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John Collier | August 2, 2013 at 3:37 pm
My surgery is to take place on Monday 12 August, I know I have all your best wishes as we all have this terrible illness. I sincerely hope all are well and are coping with their problem prior to surgery or are recovering well from it……take care…….stay lucly
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Web Pixie | August 4, 2013 at 1:37 am
Sounds like your surgery was moved up!?!!! Well, John, you are correct. You certainly have all our best wishes, I’m sure. I’d like to offer you mine with all the best for your recovery. Take care and keep us posted. I’m sure you’ll remember that we’re always here for you, through the good parts and any that might be more challenging. Take care. 🙂
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John Collier | August 4, 2013 at 3:01 pm
I am apprehensive and concerned,but all of us are, and I thank you for for your kind words and hope all of us….each and everyone of us ,has our lives as blighted as least as possible by our condition.
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DAVID E. BUTLER | August 4, 2013 at 8:30 pm
So, John sounds like you are have’n a bad day.. I fit brings some levity to you, it’s like 90 outside and I got to go out and cook on open fire try’n to cook 8 steaks for the ungrateful at all stages of doneness ( the steaks not the folks, although that to may be true.lol.)… God, help us cause only we know what this path is like, and at times I don’t think they care…. Signed, My Brother in Kind…B|
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John Collier | August 5, 2013 at 7:47 am
I have my surgery a week today and I am as apprehensive as you would imagine, I am optimistic that if successful this surgery will give me an average lifespan and an acceptable quality of life…. I just this fixes me,I don’t want to have to go through an endless chain of surgery till I go to the next world….I have made plans for the future so all is not negative in my mind
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Web Pixie | August 5, 2013 at 5:35 pm
Next Monday, eh? If it removes the cause of the damage, then there should be no more damage than what you already have – right? It won’t be fun and games the first several weeks, but things should only get better after that. Just remember this, if it helps …I had lost quite a bit of function by the time I finally agreed to have the surgery. It took some time and work, but I slowly regained most of the function that I lost. The worst thing for me right now, usually, is the pain that is usually masked by the medication I take. Perhaps it would be more accurate to say that the worst thing now is the fact that I have to take medication to avoid and/or minimize the residual pain. I wish I had been more conscientious with the physical therapy exercises at the beginning, but I’m still happy enough with how things are now.
No matter what, with a skilled surgical team and the optimistic attitude you sound like you have, all you’re going to need is time and patience to start feeling like your old self again. I do hope you keep us posted on your progress – the ups (to cheer for you) and the downs (to encourage you).
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John Collier | August 5, 2013 at 6:23 pm
The experience of others has been my biggest comfort…especially the fact that we are all still alive ….except Peter, but his was the worst symptoms of us all and he had been suffering the longest. I have made preparations for my being in purdah and also being a former soccer player and coach, I can follow a disciplined excercise program. Of all of us on here my symptoms are the mildest and my doc gives me the best painkillers imaginable, I thank you web pixie….and others….for your support and relaying your experiences…..it does help.
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Web Pixie | August 8, 2013 at 1:45 am
What is purdah? Does that mean you’ll be going into seclusion?
I did recall that part of the reason for all this for you was a sports injury, so I figured your sports background could be a big help for you later.
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John Collier | August 8, 2013 at 5:06 am
By purdah, I mean initially being in hospital away from all the people and things I’m familiar with, and then being restricted when I get home and not going out as much ( I’m usually dashing around everywhere ), however….I was at the hospital all day yesterday for tests and was very surprised when I was told by the physio and other staff what I can and can’t do post surgery…..apparently I will be able to do a lot more than than I thought and my recovery time is expected to be much quicker than most on here ( who I presume are in the USA). I go in hospital on Monday, Surgery is Tuesday and then home on Weds, it all seems so different here (?)……. However I shall err on the side of caution and not overdue anything.
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Web Pixie | August 9, 2013 at 1:07 am
Glad to hear the good news! Hope your recovery time beats your expectations too. I’m not sure that location has as much to do with things as a person’s individual medical problem – although it might! I know there are a lot of scary stories here, but everyone’s situation is different. While most probably are in the United States, seshu is in India and there have been other visitors early on from locations outside the US (mostly India, I think).
My surgery was supposed to be “same-day surgery,” but I chose an afternoon slot because I didn’t want to go home half-sedated a mere few hours post-op (plus other reasons having to do with the situation at home during that time). Because I chose an afternoon slot, I was sent home the following morning – but it was certainly not ideal. I was scheduled for PT the following Monday (I think my surgery was on a Thursday afternoon) and I had no ride to get there nor was I cleared by the doctor to drive – not that I would’ve tried with the pain meds I’d been given! It all eventually did get worked out, regarding the PT and the follow-up doctor visits, but it was a bumpy road for me. Not so much because of the diagnosis, but more because of other non-medical complications that resulted from the diagnosis.
It’s great that your recovery period looks like it will be SO much smoother! You won’t be locked away in a hospital for weeks, you won’t be nearly as restricted as you expected once you get home – as you said, you’ll be able to a whole lot more than you thought!!!
I hope you will have time to keep us posted … 🙂
It could prove to be very reassuring to some of our future visitors.
Best wishes to you, John!
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John Collier | August 9, 2013 at 6:25 am
Again I thank you for your reassuring words and I shall be on here again as soon as I am feeling well enough to resume my interest ( almost passion) for computers…..your right,my experiences maybe helpful to others as I have been so anxious regarding the surgery…………..I’ll be back soon
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Web Pixie | August 11, 2013 at 4:09 pm
Looking forward to hearing back from you and now the big day is only hours away. Best wishes to you, John!
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john c | August 11, 2013 at 6:06 pm
I shall let yall know how I got on a s a p …i am pretty nervous but…its only to be expected I guess.
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John Collier | August 16, 2013 at 9:24 am
I am now 3 days post op,when I woke up I felt like I has two new arms,all my symptoms have gone….I feel like I have a golf ball stuck in my throat otherwise I don’t feel too bad…….I really did believe that without surgery I would die……..the hospital and staff at hull royal infirmary were simply superb
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Web Pixie | August 16, 2013 at 5:23 pm
Glad to hear you’re doing so well, John! Thanks for the update. 🙂
(I wonder how seshu is doing this long post-op)
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John Collier | August 16, 2013 at 6:04 pm
I do feel like I am doing very well post op,and I sincerly hope all on here continue to improve…..
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John Collier | August 25, 2013 at 10:14 pm
12 days post op and things have changed dramatically. I had my surgery on the 13 th, for about 5-6 days I was symptom free, in fact all throat,swallowing, eating, voice issues are now gone or almost gone, but about a week ago I started getting horrific pain in my upper arms, so bad that even diconal will not touch it, so bad that I am screaming and crying and cannot move.this is almost exclusively in the early hours making me think there was a connection between it and me laying down…. I went to see the doc who prescribed a different type of painkiller, the pain has now eased a bit but still noticible. This could be a very long hard road. Arms feel very weak and symptoms are many times the pre op worst……I am still hopeful of a near full recovery……..,,,at the moment
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Web Pixie | August 26, 2013 at 2:32 am
Honestly, John, I’m glad I don’t remember much of the early days post-op. One thing that I do remember is one of the most important exercises they gave me at physical therapy – “wall slides.” I don’t really know, technically, what it does but it had something to do with stopping scar tissue from forming in such a way as to limit how your arms move down the road. There were a couple different types, as I recall. One is where you face the wall and step toward it as you slide your hand up the wall in front of you. The other was done standing with the wall beside you, I think. I don’t remember how many times you do it or how often, but you do one hand at a time. There was a little packet of exercises they gave me and these were pretty important.
The more I think about those early times, the more I do remember little things here and there. I just remembered complaining to the doctor about the pain I was having. I don’t remember exactly where the pain was and I think it was in different places at different times. There was one thing he always said to me and that was, “The pain you are feeling are the things that are healing.”
Of course, pain can also be a signal of something wrong so it’s good to ask about it and probably not so good to let the painkillers mask it too much. I hope most of your pain is the from the healing process, though, John. Thanks for checking in and keeping us posted. We’ll keep you in our thoughts or prayers. Hang in there!
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John C | September 27, 2013 at 5:18 pm
just over 6 weeks post op……seems like a lot longer……I am feeling much better, better than I have in years….the only problems I have had in the past 3 weeks are the two occasions when people shut one of my car doors too firmly, and the vibration cause pain in my neck. Generally I am feeling very very good……no medication….no painkillers…..just excercises. The only negative thing is I find it hard to get comfortable on a night laid in bed…that’s all…….otherwise, almost as good as new. I am ALWAYS interested to know how you all are getting on………….so don’t be a stranger on here…………………………………ya hear ?
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DAVID E. BUTLER | September 27, 2013 at 6:24 pm
Must be nice.. New Doctor I’m see’n Physicist (ya, that’s what I thought. turns out he’s just another pill pusher.) His Asst, said I was ‘inoperable’, not what I wanted to hear! I still think it’s more a matter of money (same old same old)… I don’t know what I’d do with ‘REAL’ Medical ‘Professionals’ & Health Care…. Not just take two & comeback in 90 days…LOL!
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Web Pixie | September 28, 2013 at 6:42 pm
Such encouraging news for so many who might read this, John. It is really good to hear that you’re doing so well.
I’m somewhere in the middle between you and David, I’m afraid, but pushing to enjoy whatever I can. We just got back from a canoe trip, the 3rd I’ve had the courage to take since the surgery. For me it was 5 years before the first time I tried but my husband chickened out from being out on the river with me and have something go wrong. Things went better a couple years later for the 2-hour float turned out to be WAY too short, even with it being my first time out.
We used to go canoeing at least a few times every year before the injury that ended up being myelomalcia. Now we are making it a point to go at least once. This time we were out on the water for almost 5 and a half hours! No more doubts or chickening out because of the injury.
Now, if only I could feel like I could manage without the gabapentin or the baclofen, like you are able to do so early in your recovery. I do know what you’re talking about, though, with the car doors!
David, I still keep hoping you find someone very competent who is willing to help. I saw at least a few physiatrists (not to be confused with psychiatrists), and it seems their main specialty is drugs and drug injections right in your spinal canal. Fortunately, one felt didn’t need any more of that and referred me to the one and only physiatrist who was interested in using as little medication as possible. She was not afraid to recommend surgery when she thought it would help but she did run into a bit of the old-school thinking that she, not being a surgeon, couldn’t possible know what she was talking about.
I miss her because she went to work for the VA and I’m not a vet. This may help, though: She was a DO, not an MD. If you’re able to find a physiatrist who was trained as a DO, there may be a better chance of having the cause of your myelomalacia treated instead of meeting yet another pill pusher. Just a thought. I keep hoping and praying that the right doc is out there for you, Dave, and that you’ll find each other SOON! 🙂
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DAVID E. BUTLER | September 28, 2013 at 9:29 pm
Well, John had an “ACA” being in England doctors over there get paid whether they cut you or not…. We, here in America don’t get the truth the whole truth, SS got the same kind of flak when it was proposed and now Congress can’t live without it! My lack of health care translates directly to the size of my back account!! Ya, I’m hot, being a Catch’22’ Cripple…..
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John C | September 29, 2013 at 9:57 am
Hi Web Pixie…you certainly aint letting your malady hinder you ….I was in pro soccer for 13 years but at nearly 59 yo I only spectate these days , I used to like golf and bowling too and the physio says I could do both again, golf as early as next month and bowling next year………..but I am going to call it a day with both .I have plenty of other less active interests like computers and astronomy. I don’t seem to have any lack of restriction of movement in my neck apart from looking up, and as I cant tilt my head back I am still drinking through a straw…..and this may carry on for some time.
I take no painkillers , I was on Diconal which worked pretty well…things have healed much better and quicker than I thought so far………………….David, your healthcare is dreadful…..I feel you would have had better treatment in Harare or Baghdad…….its a very poor reflection on ‘The Land of the Free’…and I’m very pro America being both a full SCV and SUVCW member. here in the UK I don’t know what they would have done with you but they would have done SOMETHING !
You all take care and …..stay lucky….ya hear ?
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DAVID E. BUTLER | September 29, 2013 at 6:51 pm
Thank for the upbeat message! Like I say, “When, you’re dumb you got to be tough, git any tougher I’ll have caucuses on….”, well you know where..LOL! Ya, and you see the games they seem to want to play with our livelihoods over here, Common sense seems to have got out with the bathwater as say’n goes.. Glade to hear you are F.I.N.E. (don’t ask to ‘splain.lol) You figure it out, keep you busy..
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Web Pixie | October 1, 2013 at 6:39 pm
David, I keep hoping this ACA might offer you some help. I don’t have much of a bank account anymore but I’m so thankful for my husband’s health insurance. Evidently, the docs love it …in fact, the first one who looked at my neck MRI many years ago didn’t say, “I can help you with this.” He said, “Not an insurance company in the world would turn down surgery for an MRI like this one!”
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DAVID E. BUTLER | October 1, 2013 at 6:53 pm
They, just look at my MRI (look like a pile of ‘voodoo bones’.lol), and say, “I’m amazed you are do’n as well as you are…” And, pass me on to the ‘PILL-PUSHER’ in their Practice… Psychiatrist, my ass… Hell, I can stand on the corner and get pills for a lot less money & hassle… They, might even come to my house..LMAO! Oh, up-date, NC. didn’t sign up to ‘Obamacare (ACA)’, so we have budget cut’s (local hospital 35% cut)
for what we already ‘don’t’ have…
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Web Pixie | October 2, 2013 at 4:41 pm
Sounds like our state did the same as NC. The national “marketplace” is available but our legislature turned down the m/c expansion. The hospitals and docs howled because their budgets would be cut regardless (probably the 35% you’re talking about), but our legislature didn’t care. If that made things worse for people, then all the better for them to make their point that offering somewhat more affordable health insurance to people who couldn’t get it or had to pay through the nose for it before is a bad idea.
Did you notice I mentioned physiatrists before, not psychiatrists? Not that all physiatrists are as great as the one I was lucky enough to see for a short time – until she got a 9-5 job as a doc at the VA. Lucky for the vets but sad for the rest of us. The only other physiatrist I saw just wanted to inject my spinal canal with drugs while he complained to his assistant about his love life. Gotta be careful, that’s for sure.
Hope your “voodoo bones” are taking it easy on you today, Dave. 🙂
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John C | October 2, 2013 at 6:21 pm
I do think at times others don’t quite understand , even those who know us best……my wife was there when the surgeon said how bad things were, but seemed to things wer’nt all that bad when I was still alive at the end of the week . Even though only one of ‘us’ on here has died , and he was by far the worst affected of us all, we are all cursed with this damned thing and even though the docs have helped most of us (I did say ‘most’ David) we ourselves have to make the most of what our condition will allow. What we have is amongst the most painful of all maladies when it decides to kick off, and many of us have had long spells of immobility…and I sympathise AND empathise with every last one of you …not one of us has had it easy.
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DAVID E. BUTLER | October 2, 2013 at 7:47 pm
Jez, Bud… Words don’t work, even if I had them, don’t count… And, yes it’s hard to see what we have.. Why, is it so hard for others to see that they are blessed..
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John C | October 2, 2013 at 8:14 pm
David……we hope you get at least ‘something’ done…..dunno what else to say to ya ….it seems like you got the short straw when it came to medical care .
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DAVID E. BUTLER | October 5, 2013 at 2:11 am
Ya, remembering the Halo & Chair…And, now to think after all the work and pain I went threw to climb out of them, to be look’n at go’n back in them again… Jodi Michell.. How ’bout Emilou, “Ain’t Live’n Long Like
This….Can I BABY….”
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Web Pixie | October 5, 2013 at 5:25 pm
Oh, David. Not the halo & chair again? At least I think I know what you’re talking about, hoping still you can avoid them. Did something new happen? Weren’t you grilling steaks for the fam a few weeks ago?
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Web Pixie | October 2, 2013 at 10:00 pm
Because, David, like Joni Mitchell said, “You don’t know what you got ’til it’s gone.”
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Web Pixie | October 2, 2013 at 9:58 pm
You are so right about that, John. I was reminded by a friend last week that I had used a cane for a long period of time after the first surgery. Then someone else reminded me how I had used a walker right after the surgery and how difficult it was to manage because my husband was not at all supportive at that time. In fact, he left and stayed with a friend for awhile while I was home trying to do things like fix a meal while wearing a neck brace and using a walker to get around – not too easy to carry a gallon of milk while pushing a walker around. My husband finally did come around and was totally supportive during and after the 2nd surgery and since.
It’s good to remember those times, occasionally, for many reasons – mostly for the benefit of others who are going through those early times now. Sometimes things get better – not always, but sometimes they really do.
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Web Pixie | October 1, 2013 at 6:45 pm
Hi John…yes, I do keep trying. My husband doesn’t seem to understand my desperation but I see it two ways. One, we lost 8 years of canoe trips after my injury when we had been going sometimes 2 or 3 times every year before that. Then there’s the other part. I hope I can continue to make these trips and I hope that by continuing to try, it’s more likely to stay possible. One day, though, it may not work …so I keep doing what I can to make the most of every moment. When this first happened, I didn’t think I’d ever have any more moments to ever enjoy anything again. Glad to hear you’ve been able to get good care there across the pond!
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MNSongBird | January 5, 2014 at 2:27 am
Hello, I have just received this awful news and have read every post. What has happened since June? I’d dearly love to connect with all of you. Thanks.
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Web Pixie | January 5, 2014 at 4:09 am
So sorry to hear about the news you’ve just received. It’s a tough thing to hear and often presents difficult decisions. I hope you have found reading the posts somewhat of a comfort, despite the downsides that we’ve shared. Hopefully, others will add a post. I would also like what’s happened since June.
I often think about the people who have posted here and wonder how they’re doing. I hope they are all doing so well that they no longer have any inclination to check this space. That, or they’re too busy working on the healing process to check back. Physical therapy takes a time commitment and healing often seems to come and go. Some of us have frustrating times with finding our way through the “system.”
Please feel free to share what you’d like. I would be happy to offer whatever support I can, as I’m sure others will too.
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Web Pixie | January 5, 2014 at 4:19 am
One more thing, MNSongBird …there are some posts above yours on this page that tell some of what’s happened since June. 🙂
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Autrey gutierrez | January 5, 2014 at 8:04 am
Hi all, I don’t know if any of you remember me or not! I have only posted on here once back in March of 2013 I believe! My name is Autrey and I came across this site in search of answers to my diagnosis and symptoms. I had never officially been given the diagnosis of Myelomalacia , however my symptoms were the same as what you all have posted here. I had my first surgery March 30, 2012 after my MRI showed I had spinal cord compression from C4 – C7 worst at C6 – C7. I had Anterior Spinal Cord Decompression and Fusion of C4 – C7. I had continued symptoms of hyper-reflexia and spondylosis with Myelopathy therefore a Ct Myelogram was ordered which showed I had continued cervical spinal cord compression As well as spinal cord atrophy at C6-7. I wasn’t sure what spinal cord atrophy was or how that was significant. Now for an update. On May 10, 2013, I had a second surgery for spinal cord decompression and fusion of C4 – T2 this time posterior due to non fusion and continued spinal cord compression. The reason for the surgery this time wasn’t so much to give me pain relief but rather to guarantee successful fusion and to re-enforce the screws that had begun to loosen as a result of the nonfusion. My symptoms continued to progress which was alarming to me considering the fact that the compression was now taken off of my spinal cord so I thought I would begin to improve. For the first time my Neurologist mentioned the term Myelomalacia and between her and a second Neurosurgeon the explanation is that I had progressive spinal cord compression which because my symptoms were so subtle initially, went undiagnosed for several months. The compression lead to Myomalacia, which lead to spinal cord atrophy. The atrophy is scar tissue in my spinal cord which is permanent and cannot be treated.it causes the continued hyper-reflexia and painful muscle spasms, as well as severe pain mostly in my legs however in most other places as well. Unless there is further cord compression requiring another surgery, there is nothing they can do for me other than treat the symptoms. Like you Web Pixie I take Gabapentin and Baclofen, a pain medication and now an antidepressant. I have really struggled with this on so many levels. 1. I have always had a very strong mind. I’m tough I have always been able to pull myself up by my bootstraps and get done whatever was needed to get done regardless of what was going on in my life or how I felt. I got up, got ready, physically and mentally, strapped on a positive attitude, gratitude, prayer and a smile and got to work. I have always been able to overcome. Non of my “tricks” work for this! No matter how positive I remain, no matter how much I try to “mind over matter” it no matter how much I try to push myself and “just do it”, it doesn’t work. 2. I don’t like taking medications of any kind. To not be able to function to any degree of normalcy without the medication is extremely frustrating to me. To know that Unless I receive a miracle I will have to take these medications (and periodically increase them to boot) for the rest of my life is overwhelming. To realize that since May, my quality of life has diminished to such a degree that it’s difficult for me to make any kind of commitment because I never know from one day to the next or one hour to the next how I will be feeling is sometimes more than I can bear. The uncertainty of the future knowing that this “thing” can continue to progress and there is no way of determining it’s course or stopping it, only to watch it and try to manage the symptoms as they arise. I have experienced depression which is foreign to me. After researching I have learned that depression is actually caused by the Myelomalacia. 3. I have always worked. When my children were young I ran home businesses which allowed me to be a stay at home mom and still earn an income. Now I am on SS Disability. It’s difficult to hold my grandchildren which I have 5 of and they are my pride and joy!
I am so sorry for the long rant. I usually remain positive however, there are times when the magnitude of this diagnosis hits me and I find myself back to square one! You all have been an answer to my prayer! I try not to concern my family with all of my thoughts and fears because I don’t want to cause them more fear than they are already experiencing. I don’t want to sound negative and depressed. Can I share my heart with you though. You know those feelings you get deep in your heart and you can’t always share them with your family because, well you just sound crazy? I just have this feeling it’s taking me. My stamina is so badly affected! I am weak, I am very tired and worn! I am fighting but I just get this feeling…..
Thank you for once again indulging me in my quest for understanding. Please let’s keep these posts going? I lost my contact information so I had to wait until someone posted! My thoughts and prayers are with each of you and I’m looking forward to hearing from you! Autrey
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Autrey gutierrez | January 5, 2014 at 8:05 am
I promise my next post will not be sooooo lengthy!
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Web Pixie | January 5, 2014 at 5:57 pm
Please always feel free to write as much as you feel, Autrey. It helps you and, in ways you may not know, it helps the rest of us as well.
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Autrey gutierrez | January 5, 2014 at 7:07 pm
Thank you, how are you doing? MNSongBird, my thoughts and prayers are with you as you work through all of the thoughts and emotions following your diagnosis. The positive aspect of this; and yes I do believe there is always something positive even of it’s just a tiny nugget; is that we have an opportunity to impart something positive into another’s life that we would otherwise never have the opportunity of doing. Keep us posted.
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John Collier | January 5, 2014 at 2:54 pm
I have CSS and myelomalacia. Surgery for discectomy and fusion was on Aug 13 2014…..I continue to recover well…….I am also part of the CSS group on Facebook which I strongly recommend you all join. It’s very very supportive, very informative, approx half of its 250 or so CSS sufferers also have myelomalacia.Autrey , you say your symptoms went I diagnosed for several months, I wasn’t diagnosed correctly for 13 and 1/2,years. To use colloquial language ..myelomalacia sucks !….. A lot of what you say is frequently mentioned on the CSS ( cervical spinal stenosis)Facebook group… Especially the symptoms and feelings you mention, and…..how only a sufferer really understands
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Autrey gutierrez | January 5, 2014 at 6:25 pm
Thanks John, in reference to the Facebook group you mentioned, how do I join? Can you send me a friend request? I would be interested in joining! I refuse to give up or give in and would also like to be part of a network of others where we can encourage and support each other. Today is a difficult day! We are in the midst of a major snowstorm and temps getting to plummet to -12 and I am really “feeling” it! On a positive note, the snow covered trees and landscape is beautiful!
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Web Pixie | January 5, 2014 at 6:56 pm
Me too, John! I just did a FB search for CSS and found a CSS Forum that helps you prepare for the Pakistan civil service exam. 😀
Maybe it would be ok to post a link here. Thanks!
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Web Pixie | January 5, 2014 at 7:04 pm
Autrey, you are right – this weather is brutal! It’s still 12 above here but it’s supposed to go way below zero tonight and MAYBE warm up to zero tomorrow. I’m sure it’s much colder where you are. You are also right about the landscape, though. We have lots of snow too (for us) and it’s very pretty on the trees and all around.
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Web Pixie | January 5, 2014 at 7:01 pm
Found it, but I see it’s a closed group. Does that mean you need an invitation? Hope today is a good day for you, John. 🙂
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John Collier | January 5, 2014 at 7:05 pm
It is a closed group but you just have to ask to join, that’s all……I think….for those of you wanting to join it it is the Facebook group called …Cervical Spinal stenosis…….x…lemme know if anyone wanting to join has problems…….ya hear ?
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John Collier | January 6, 2014 at 12:15 am
anyone wanting an invite to the Facebook group mentioned earlier please send your email to me at collierj7va@hotmail.com
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Autrey | January 14, 2014 at 9:54 pm
Hi John,
I sent a request to join the Facebook group but if you could help with that I would appreciate it. My e-mail address is autrey@wowway.com
Thanks,
Autrey Gutierrez
>
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John Collier | January 15, 2014 at 9:12 pm
I have asked the group founder and administrator to add you
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Rachel | February 6, 2014 at 3:48 am
My Dad shared his most recent (1 yr post decompression op) contrast MRI with me. It says stenosis several times and possible Myelomalacia. I doubt he would ever come on here so I’m commenting for him. I have read every comment on here and have shared some of your stories with him. I think it helps to know you are not the only one trying to re-learn how to do the simplest activities. Your stories have moved me to pray for you. All I can say is I’m so sorry that you all have to go through this especially those with pain. A year ago my Dad was loosing function so fast he had the surgery right away. He has gained a lot of function back but of course not all. They also told him after 2 years he would not gain anymore back. It seems that trying to re-learn daily activities is all the therapy he needs. Do you all think formal physical therapy is always best or can it cause more harm? Also, some of you have reported a re-injury after the 1st surgery, do you have any advice on how to avoid that? Do you have any advice for dealing with the painful involuntary muscle spasms?
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Web Pixie | February 7, 2014 at 6:11 pm
Thank you for your prayers, Rachel. I can’t tell you just how meaningful it is to know you’re praying for us. I believe I can speak for many of us by letting you know we’re praying for your dad as well.
As for the myelomalacia, I can only speak for myself. The doctor also told me that any function I’ve regained after 2 years will be as good as it gets. I found that not to be the case at all, although the progress was probably faster during those first 2 years than it has been since. One of the most important things is re-learning those basic activities and keeping at it until it all seems natural again.
As for formal physical therapy, I did find that it helped but when and with whom made a difference. The earliest physical therapy exercises, right after surgery, were things like “wall slides” with each arm to prevent scar tissue from forming that could limit activity in the future. The physical therapist who explained that to me was very good at what she does and very upbeat – which helped a lot.
After that I felt that I needed physical therapy for my hands because of the involuntary motions, reduced coordination, and excruciating pain. As it turned out, physical therapy for hands is called occupational therapy here – although the people I worked with were a physical therapists who specialized in hands. They gave me some “Thera-Putty” and various exercises to do with and without the putty and I must say that it did help quite a bit! There’s no way I could’ve written this overly-long comment had it not bee for that, I’m sure.
Your concerns about some physical therapy causing more harm than good is well-founded. I don’t know how to tell you to be careful, other than a person should quit if it hurts. One of the best physical therapists I had told me that the “No pain, no gain” philosophy does NOT apply to physical therapy. Gentle, measurable progress is what’s important – whether with simple home exercises or with more advanced exercise equipment under the close supervision of a good physical therapist or a physician who specializes in physical medicine.
As for the painful, involuntary muscle spasms – for me, they slowly subsided over time. It’s been 10 years and I still notice that my fingers sometimes move involuntarily, although years or months have gone by when nothing like that happens. It worries me sometimes, but it probably shouldn’t. Having my little finger move around all by itself is nothing compared to how my arms or legs used to just “fly out” for no apparent reason. Still, I continue to see a neurologist every 6 months or so to keep an eye on things. I try to maintain a daily walking routine to keep things from deteriorating. It’s difficult to do in the winter and I can see the negatives effects of not keeping it up – wobbly on my feet, more frequent muscle spasms.
I hate talking about myself as though I represent everyone with myelomalacia or any of the others who’ve posted their experiences here. I can only speak about my own experiences, so I must emphasize that all our experiences are different. Sometimes I feel lucky, but I felt anything but lucky when this first happened and for a long time afterwards. Really, sometimes I still spend a lot of time trying to convince myself that things are good or even that things could be much worse (which, of course, they could be).
It sounds like your dad was fortunate to have had the problem identified and addressed so quickly. Two years seems like a long time and 10 years sounds like a REALLY long time, but it doesn’t really seem that way day by day. The important thing to know is that progress doesn’t just stop at the 2-year mark. There isn’t a timer that goes off and puts a halt to any progress that’s being made. Progress can continue and it often does.
Please keep us posted on how you and your dad are doing. I wish both of you all the best and will keep your family in my prayers. If you ever have more questions, we’re always here. 🙂
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collierj7va@hotmail.com | February 7, 2014 at 7:08 pm
I am now 6 months post op…..you only have to look at my previous comments to see how bad I was….I still have myelomalacia and CSS of course….but I actually feel 100%…no pain no symptoms , no meds. I also strongly recommend people using this page to join the facebook group ….CERVICAL SPINAL STENOSIS
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Web Pixie | February 7, 2014 at 10:03 pm
Congratulations on your great recovery!!!
May need to get an invitation to that facebook group. It didn’t look so easy to join last time I tried.
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collierj7va@hotmail.com | February 8, 2014 at 12:01 am
anyone wanting to join the spinal stenosis facebook group , just send me your email , I can be contacted on johncollier771@btinternet.com
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collierj7va@hotmail.com | February 7, 2014 at 7:12 pm
The vast majority with CSS only need one surgery…..some do have a second injury its true , the simplest and most effective way of avoiding that is ‘respect the neck’…..NO straining…..NO physical activity putting strain on the neck.
GO CAREFUL….simple as,…Before you do anything involving the neck ( within reason) ask yourself …’should I be doing this ?’
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Web Pixie | February 7, 2014 at 10:01 pm
My doctor used almost those exact words. He told me, “Respect your neck.”
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John C | March 31, 2014 at 10:10 pm
You should all join the Facebook group for cervical spinal stenosis……highly recommended!
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DAVID E. BUTLER | April 4, 2014 at 8:51 pm
Hey, Big John,, My MRI looks like a ‘chewed sippy straw’, the web is not my fiend ! Seems this leads to ALS or MS…I, really don’t need a progressive debilitating outlook…Seems ‘bright spots’ and ‘rosey outlooks’ are getting hard too find..LOL!
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MN Songbird (Robin) | April 4, 2014 at 9:28 pm
Hi, having just gone through nearly six months of hell, I want to point out that if you have compressive myelomalacia, then it doesn’t lead to ALS or MS. A curse on the neuroradiologist that misread not once but twice my past and current MRI’s. A special place in heaven for Dr. Nussbaum who instantly saw the correct information. The autoimmune issues come when there is no physical impingement now or in the past that started the process. Take heart, there can be hope.
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DAVID E. BUTLER | April 7, 2014 at 9:24 pm
I, don’t know where it is you live.. But I can’t get the time of day here..If I question them here they show me the door. And i have to try and find another.. Send me info on doctor and this ‘MN Songbird’s’ email debutler56@hotmail.com. God knows I need some hope there is ‘none’ here, just “See you in 90 days.
Here’s your pill..”
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John C | April 4, 2014 at 11:44 pm
Hi David……good to see your still contributing on here…hope your doing as well as possible……I’m doing real well !…and hopefully I’ll be ok now
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DAVID E. BUTLER | April 6, 2014 at 12:17 am
God Bless You (‘PC’, not me ).. It seems to get crazier by the day around here, but I’m too stubborn
to give in..
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Web Pixie | April 7, 2014 at 2:56 pm
Glad you got another MRI, John. Hope your doctors start acting a bit more helpful. Please read MN Songbird’s note about ALS and MS. Having this condition is bad enough without adding this for us to dread that don’t exist. Sometimes tests for ALS and MS are run to rule those things out because, with such similar symptoms sometimes, it’s hard to tell them apart without testing for them. Hang in there, buddy, still thinking about you and wondering where you’ve been.
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Rick | April 16, 2014 at 6:01 pm
My name is Ricky Jenkins, back in Sept. of 2010 I was under the care of
Dr. Noel P Lim, I went to him for neck pain and burning and tingling in
right arm and left arm. He did an Exam and was very concerned so he had
an MRI done, the findings were as followed:
Technique: MRI of the cervical spine was performed at 1.5 Tesla per
routine protocol.
Comparison (s) none available.
Findings: Images are markedly degraded by patients motion. Several
imaging sequences were repeated without significant improvement in
image quality.
There is advanced degenerative disc disease throughout the cervical
spine, most noted at C3/4, C5/6, and C6/7. Modic type degenerative
endplate changes are noted within the C5, C6, and C7 vertebral bodies.
There is focal increased T2 signal within the spinal cord at C3/4 and
C4/5 levels.
C2/3: Broad-based posterior disc osteophyte complex without significant
spinal canal or neural foraminal narrowing.
C3/4: Advanced degenerative disc disease with complete loss of disc
space. Large broad-based posterior disc osteophyte complex resulting in
severe bilateral C4 neuro foraminal narrowing. There is flattening
along the ventral margin of the thecal sac and the AP diameter spinal
canal is narrowed to 8 mm.
C4/5: Degenerative disc disease. Central posterior disc
herniation/protrusion with mass effect along the ventral aspect of the
thecal sac and spinal cord. AP diameter of the spinal canal is near the
5-6 mm.
C5/6: Advanced degenerative disc disease. Broad-based posterior disc
osteophyte complex. Short pedicles. There is flattening of the thecal
sac and spinal cord. AP diameter of the spinal canal is narrowed to 8
mm at this level. There is severe bilateral C6 neural foraminal
stenosis.
C6/7 Advanced degenerative disc disease. Broad-based posterior
osteophyte complex. The diameter of the spinal canal measures 9 mm .
There is mild to moderate bilateral C7 neural foraminal stenosis.
C7/T1: No significant stenosis.
Impression: There is multifactorial spinal stenosis and moderate or
severe bilateral neural foramial stenosis from the C3/4 through C6/7
levels.
There is abnormal signal within the cervical spinal cord at the C3/4
and C4/5 levels, probably representing mylomalacia secondary to chronic
compression.
If there is a Doctor out there can you please tell me how bad is this!
Please email me at rickyjenkins2@aol.com
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Rick | April 16, 2014 at 6:07 pm
I’m sorry, that email address is rickyjenkins4@aol.com
Rick Jenkins
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Rachel | April 17, 2014 at 6:43 pm
I’m not a doctor but You may find these sites helpful…Medical-dictionary.thefreedictionary.com (so you can learn the medical lingo used in your MRI)
Or healthtap.com (where a real doctor is likely to answer your questions). however usually online doctors tell you to see your doctor. What did he say after the MRI? Have you received any treatment? Did you try to find a neurosurgeon for a second opinion?
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DAVID E. BUTLER | April 17, 2014 at 6:58 pm
I’ve used up my options here in S.E. NC., they just want to give me a pill and to go away…I’m strongly considering moving to New England…Ya, the web, is not my friend.. I know what to say ‘they’ don’t get pay’d to talk to patients.. Mush less listen! (i, don’t get
technical on web [ too meany watch’n] our business, not the web’s)
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John Collier | April 18, 2014 at 11:56 pm
I am not a doctor but I can tell you that this is bad, just the word ‘myelomalacia’is a devastating diagnosis according to medical opinion. You can email me at collierj7va@hotmail.com if you want to contact me personally. Or/ and you can join the Facebook group for Central spinal stenosis
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julles T | May 18, 2014 at 1:33 pm
Hello All,
I’m 53, very active. I had a cervical tumor inside my spinal cord removed in 2008. Surgery was successful, tumor-wise, but left me with chronic intractable pain…no biggie, I can deal with it. Ive had a follow-up MRI each year. One showed a syrinx (no one said to do anything about it). I blew off last year’s MRI and just had one done last week. It showed 1 bulging disk (c3-4), 2 compressed (c5-6), spinal stenosis and myelomalacia…I think I’m screwed. The doctors office (pain Dr.) just mentioned the stenosis. I requested the report and found the rest. I’ve been noticing lately when I’m just walking around, both my legs turn to rubber all at once. I have to stop and wait…30 seconds or so…for it to pass. I’ve also had some breathing “heaviness” lately that I attributed to smoking (yes, I’m a nasty smoker), but now I’m wondering. I will send the report to my neurologist (Dr. Paul Mccormick…he’s amazing! I went to 3 other surgeons in different hospitals…they all turned me down and sent me to Dr. M! It was quite a recommendation!). Some sites tell me that the myelomalacia is nothing and others say it’s practically a death sentence. I’m a little nervous and the thought of surgery again is more than I can bear. After the first one I said never again (even though it saved my life, it was worst than horrible)…I would rather croak, but I suppose I may have to rethink?? Anyway, thanks for your website…nice to know I’m not alone but sad that so many suffer. Julia
P.S. If a doctor ever prescribes Cymbalta, DO NOT TAKE IT!! It works great on pain but you WILL wish you were dead when you try to stop taking. There are websites that deal with the horrible effects of cymbalta withdrawal…IT…WAS…AWFUL! About 3 months of throwing up, brain zaps, pain, etc…never take even 1…not worth it! I always warn people about this drug.
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John C | May 19, 2014 at 4:21 pm
Myelomalacia is about as bad as it gets, any damage , symptoms or function loss caused by it is permanent, with no chance whatsoever of recovery. Your family doctor probably hasn’t even heard of myelomalacia. I belong to the FB group ‘Cervical Spinal Stenosis’ , we have about 500 members of whom about half have myelomalacia, I have also just started a myelomalacia group. You may get a lot from both , though the latter has only just started. Your diagnosis is not good , but I have seen worse , much worse.
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Autrey Gutierrez | May 19, 2014 at 6:15 pm
Hi John, how can I join your Myelomalacia group?
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John C | May 19, 2014 at 7:13 pm
My Myelomalacia group has only just started, go to Facebook and search for the Myelomalacia group. Go to the page and join up….Also you would benefit from the more established CSS group on FB
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Web Pixie | May 20, 2014 at 3:07 am
Not to worry. Things can get better but there is no cure. If Dr. M says surgery will stop the damage, which is what myelomalacia is, you will probably want to do that ASAP because the alternative is so much worse than recovering from the surgery. It took me a month to decide to go through with it and the only thing that brought me to that decision was my sister-in-law strongly suggesting I get the surgery before I lost even more function. I did regain a lot of the function I had lost prior to the surgery, but not all of it and I’ve pretty much decided I will be managing the pain forever. Still, to me it’s better than no sensation or function at all! But that’s just me. Some of us here have also learned to live with less function and even more pain.
Best wishes to you, Julia, and please keep in touch. It helps sometimes to be able to talk to a small group of people who have been where you are and it’s helpful to others who might find comfort from your experiences in the future. That’s not to discount the Facebook group, however, which is a fantastic group!
Also, John C. is right. Your primary care doc probably doesn’t even know what myelomalacia is. Some docs know full well what it is, but they shy away from explaining it because it sounds so scary. It is scary, but it sounds like you’ve been through worse and you’ll get through this. Again – best wishes to you and will keep you in my thoughts, Julia.
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Sherri | December 20, 2014 at 4:52 pm
I’ve been browsing on-line greater than 3 hours as of late, yet I never found any interesting article like yours. It’s lovely worth enough for me. In my opinion, if all webmasters and bloggers made good content as you did, the internet will probably be much more helpful than ever before.
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colin | March 28, 2016 at 5:32 pm
Hi all,
Web pixie,do you have a link to the Facebook group ?
much appreciated.
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Web Pixie | March 29, 2016 at 4:10 pm
Hi Colin,
Try this link:
https://www.facebook.com/groups/1385536881729549/
It’s a closed group so you will need send a request, but it’s a very supportive group with lots of useful information.
Best wishes to you!
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John C | March 29, 2016 at 4:39 pm
Just go onto Facebook and put myelomalacia in the search facility
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Diana | June 24, 2016 at 3:34 am
I was diagnosed with MS back in 2004 and have had several MRI’s but not until my most recent one in May did the doctor inform me that I had myelomalacia. I have been trying to research this condition and I am becoming a little disheartened with the lack of information on this subject. I was told since the compression was being caused by a lesion instead of a disc, vertebrae, or by a bone spur, something that surgery could correct that it was just gonna progress without any means of relief but by medication. So any information that you could shed on this subject would be greatly appreciated.
Diana
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Web Pixie | June 26, 2016 at 5:05 pm
There is an excellent Facebook group that has a lot of resources to offer. It is a closed group, so you will need to ask to join but they are very quick to approve requests. I hope this helps. Please check back with us here when you can to let us know how you’re doing. I wish you all the best, Diana. Take care,
WebPixie
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cris | January 5, 2017 at 4:08 am
Hi fellow spinal sufferers!
Long story short…….20 years ago I was rear ended and went to just to be checked out. No xrays, just an exam. I was told I had a sprained neck. (it tingled and just felt weird) Approximately 8 years ago I fell down my stairs with dog in tow, so my bottom took ALL the bumps. I had the worst looking huge bruise I had ever seen. My thinking was I crack my tail bone and knew there was nothing that could be done, so I didn’t go to the dr. My first bout of sciatica was after the birth of my son. I was 28. Approximately 2 years after the fall I was having I had endured sciatica that was bearable, until the day I woke up and couldn’t get out of the bed. I made it to the floor, but could not get up. Once up I couldn’t even bend to use the toilet. It was the most excruciating pain. I went to the my gp and he gave me a shot. I limped for about a month and final went to a back center. I received and EMG and an MRI. EMG showed moderate nerve damage and one herniated disc and one bulging (L4 and L5). Pain seemed to get better. Forward 2 years later. I was having the worst muscle spasms down my butt and legs. I couldn’t walk more than 10 ft without being in tears. I began having slight foot drop and numbness in foot was spreading inward. Finally, went to neurosurgeon. New MRI only showed bulging. My body had absorbed the previous herniation. I had a laminectomy, but 2.5 years later I still have the nerve damage. It is chronic pain. However, I can walk pretty normal. I have had neck pain and stiffness for years, but attributed it to rear end accident from 20 years prior. For the last 8 months I had neck pain that radiated all the way down my arm. GP sent me for PT, which seemed to make pain worse, but I had more neck mobility just from the massages.(wish I could have those ever days). PT said I had a lot of triggers. PT with traction was not working. PT was adamant that I see neurosurgeon. November 2016 MRI showed Myelomalacia, osteoarthritis, spinal stenosis, bone spurs….you name it it was in my neck. Less than 2 weeks later I went under the knife. Double fusion with plate, screws and donor bone. Today…..out of work for a little over 4 weeks. Waiting to see what happens next! Sorry this was so long, for a short story, but this is the short of it…..lol Hope it helps someone.