Symptoms of Myelomalacia

June 9, 2008 at 7:32 am 62 comments

Finally!  After years of searching for any information that I can relate to, I have found a succint description of the symptoms associated with myelomalacia. 

“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.”

Fortunately, the worst of these symptoms went away after surgery.  The “gait difficulties” improved with physical therapy and continuous, conscious effort to appear to walk normally.  The atrophy of some of the muscles in my hands has not improved, but my manual dexterity doesn’t seem to have deteriorated TOO much.  The trouble is the pain, the parenthesis, and the occasional involuntary finger movements. 

It’s somehow reassuring to have found a forum entry that describes my symptoms in connection with my diagnosis.  Until now, the most I have found are definitions that don’t seem to say enough and technical articles that don’t seem relevant to what I want to know. 

I suppose part of what I’ve been looking for is an additional confirmation of my diagnosis and now I have it.  Next is a search for a therapy, or SOMETHING, that can improve the more persistant symptoms.

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Reversible Myelomalacia? I don’t know much, but…

62 Comments Add your own

  • 1. Renee  |  May 12, 2011 at 6:17 pm

    Your diagnosis symptoms match mine. You are right so few people have this degree of spinal cord damage that little medical literature is available to explain symptoms. Doctors only confirm diagnosis via MRI T2 increased signals. Thanks!

    Reply
  • 2. PJM  |  October 7, 2011 at 4:57 am

    What you have written regarding your discovery about meaning of myelomalacia is completely inaccurate….I hope people will check further before they take for truth your comments. Myelomalacia is the most serious sequela to severe spinal cord trauma. In dogs it may occur on the order of 5-14% of the time in dogs suffering such severe spinal cord injury that it renders them paralyzed with loss of all feeling in the toes. Myelomalacia can then occur and is softening or progressive death of spinal cord tissue. It is most often (some will say always) progressive and irreversible and typically leads to the death of the dog. It is very different than cervical spondylomyelopathy….very different

    Reply
    • 3. Web Pixie  |  October 10, 2011 at 4:21 am

      I don’t believe anyone here has claimed to be an expert so it’s good that you’ve added your expertise to the conversation. This forum was started some years ago, about five years after my diagnosis, because I had such difficulty finding out much about myelomalacia other than it was “a softening of the tissue.”

      The definition you’re commenting on is not “my” definition but one found on another forum that is linked to this entry. It described the symptoms I had before the discectomy, so I founded it helpful because it was the first time I had found those symptoms linked with my diagnosis of myelomalia.

      The typeface on this entry may not have made the link obvious, so here is where that quoted information was found:

      http://www.steadyhealth.com/myelomalacia_symptoms_t61941.html

      It’s just an internet forum I found, but it helped tie things together for me.

      I should add that my neurologist has recently given me a much more optimistic prognosis than the typical one that you describe. While he confirmed that the damage is irreversible he made it clear that it’s not progressive. That is, I should not expect it to get any better or any worse than it is right now. I would imagine there are varying degrees of myelomalcia so, while I wish my damage was less, I’m thankful that it’s not more severe. It seemed much more severe when it occured than it does now. I think it’s good for people who’ve recently been diagnosed with this to know that so as not to lose hope during such a traumatic time.

      That is not to say that the prognosis is always good or that myelomalacia is not a serious condition. I would still like to know more than I do about it, so I hope you have more information to add! I wasn’t diagnosed with cervical spondylomyelopathy, but perhaps other people who read and contribute to this have. Could you expand a bit on what cervical spondylomyelopathy is? Since you mentioned that it’s very different from myelomalacia, it would be interesting to know how its similarities and differences.

      This forum is not intended to help anyone with self-diagnosis. The goal is to help with sharing experiences and learning more about an already established diagnosis. Again, PJM, thanks for your contribution. I’m sure others, like myself, look forward to your future entries!

      Reply
      • 4. Shareie  |  November 10, 2011 at 7:28 pm

        HELLO, I WAS TOLD ON 11-7-11 I HAD Myelomalacia…..Heres my actualy mri report…But 1st- I too am having hard time finding truth to our condition….Softening of the cord..OK- Thats not telling me much…So I appreciate any leads on where to find out more….I was wondering on your if you had the surgery, what process did you take, and healing info? Im to see a neuro/ortho soon…Thanks SW:EXAM CODE: MR C-S
        TECHNIQUE:
        The examination consists of precontrast sagittal T1,T2 and STIR images with axial T1 and

        T2 images en bloc. There are postgadolinium contrast fat saturated T1 axial and sagittal

        images. The study is compared with radiographs of 10-3-2011.

        FINDINGS: The images demostrate normal vertebral body heights and alignment.There is

        marked narrowing of the c5-c6 and c6-c7 discs with significant marrow edema in the

        vertebra adjacent to the c5-c6 disc. this suggests active disc denerative change. The marrow

        signal is otherwise unremarkable. There is mild narrowing of the c4-c5 disc. The other discs

        are normally maintained in height. The visualized cord is of normal size. On the STIR

        images there is some increased signal in the cord at c5-c6 and c6-c7, apparently due to the

        spinal stenosis there.
        At c5-c6, there is a prominent posterior osteochondral bar. Posterior spurring is seen on the

        radiographs. AP canal diameter at the level is reduced to abt 8mm. The cord is flattened.

        There is significant bilateral neuroforminal narrowing mostly by uncinate hypertrophy.

        There are similar changes at c6-c7, also with an AP canal diameter of abt 8mm. There is

        mild to moderate left and mild right neuroforminal narrowing at that level.

        IMPRESSION:
        Apparently signicant spinal stenosis at c5-c6 and c6-c7. Increased signal in the cord at

        those levels on the STIR images suggests Myelomalacia.Signaifigant bilateral

        neurofomaminal narrowing at c6-c7 might be sufficent to produce left radiculopathy there.
        Marrow edema in the c5-c6 and c6-c7 vertbral bodies suggests active disc degenerative

        change, likely contributing to the increasing neck pain.

  • 5. Web Pixie  |  January 6, 2012 at 8:25 pm

    I’m no expert, by any means, so I really can’t comprehend a lot of what you wrote about your exam results. In answer to your question about what course I took, I can tell you this:

    I had the surgery where a disc was removed from the front (“anteriorly”). That part of my spine was stabilized with plates, but I’m not sure how the fusion was accomplished. It was done as outpatient surgery but, since the surgery was done in the afternoon, it did involve an overnight stay. The physical therapy I had immediately following the surgery seemed to have been cut short by my insurance company – with all the pain meds I was on, it was hard for me to know what was really going on.

    The neurosurgeon followed me for about 6 months and discharged me with gabapentin as the most effective medication to manage the residual pain.

    The discharge diagnosis was myelomalacia but it wasn’t until much later that I learned from a physician who specialized in physical therapy, a physiatrist (not a psychiatrist), that what that meant was that I had a spinal cord injury. That doctor had a physical therapy facility that was almost like a gym, with weight machines and all, but it was staffed by certified physical therapists who helped the patients learn how to use the equipment and measure their progress.

    I would have visits with that doctor about every couple weeks, there at her physical therapy facility. She also scheduled more tests to make sure there was nothing more that needed to be done. The biggest help she was, besides explaining exactly what was going on and putting me on the physical therapy program there, is that she adjusted the medications I was taking to help me become more clear-headed and worked with me to make sure I was getting proper nutrition – fruits, vegetables, vitamins, iron, etc.

    It was probably a couple years before I started feeling like everything was going to be okay. I still follow her nutrition guidelines and try to walk at least a mile or two a few times a week (outside, not on a treadmill).

    I wish you all the best! I hope this helps. Please keep in touch. It seems we are all helped along a bit by each other’s experiences. It sounds like you are in good hands and wish you well.

    Reply
  • 6. Diana  |  January 22, 2012 at 6:36 pm

    Wow! What a great place to hear what other people have experienced with myelomalacia.For YEARS I have felt somewhat as if I was out here in the dark with no one else who ‘gets it’! But I was wrong!

    I had a tumor (benign) removed from the right side of my spinal chord between C-3 and C-5 about 30 years ago. Almost immediately my symptoms (weakness in my pelvic muscles, some muscle spasms, some numbness in my right hand and foot subsided. Now I am 73 instead of 40 and gradually my right side is declining.

    My right leg is the main problem. I’ve had a lot of trouble describing exactly why it doesn’t seem to work properly but mostly it seems to have to do with weakness in muscles in my pelvis, sometimes severe muscle spasms in my lower leg I have been prescribed physical therapy to work on these muscles but frankly it seems that although it does address the right muscles they never seem to get stronger, just sorer.

    I am curious to know, does anyone else suffer from muscle spasms? NOT muscle cramps (i.e. ‘charlie horses’). If so, what sort of medications have you been given to reduce them? Did it work? I’ve had Baclofen prescribed but it doesn’t seem to do much. At first they told me that I should only take 5 mg, which did nothing at all. Then the pharmacist told me I could take up to 20mg but even if I take that much it doesn’t seem to control the spasms. The spasms seem to be most annoying at night. I don’t notice them during the day because I am moving so much more than one does when one is sleeping.

    I was amazed to hear about the shoulder pain included in that first description, i.e. neck pain, sub scapular, etc. I didn’t realize that the pain I have in my neck and shoulder was part of that whole thing. I have gotten some relief from chiropractic adjustments and massage for that part.

    I live in the Pacific Northwest. Does anyone know of a doctor or neurologist who seems to be knowledgeable in this area? I haven’t found anyone very helpful.

    Reply
    • 7. Web Pixie  |  April 20, 2012 at 10:16 pm

      Diana,

      I don’t know what has helped others, but neurontin is the only thing that has helped me. I used to have crazy muscle spasms where my arm or my leg would just seem to fly out for no reason. I had completely forgotten about that until I read your post! The fingers on my right hand used to seem to want to do their own thing from time and, rarely, they still do a tiny bit from time to time. One doc tried to switch me from neurontin (gabapentin) to something new …can’t remember the name of it but I see ads for it on TV sometimes. It was horrible for me. I was just in constant pain both times that I tried to switch, but maybe it works well for others.

      It was a neurosurgeon that first prescribed the neurontin so that I wouldn’t have to take awful narcotics for the neuropathic pain. He said it was a “neuro-modulator.” I have to take it 4 times a day, but I can tell when I forget to take it on time that my life would be totally miserable without it.

      Like you, I did see a chiropractor too during the early years after my injury. I went to him for acupunture and I believe that it really did help. In fact, looking back, it may have been the combination of the acupuncture with the neurontin and some “progressive” physical therapy that had been prescribed a year or two earlier that helped turn the corner for me.

      I live in the Midwest, so I really don’t know what docs in the Pacific Northwest might be helpful. I wish I could be more help now but if I do find out any information, I will be sure to post it here. I have an idea where I might look but I don’t have all the info I need to try looking for it right now. I wish you all the best, Diana!

      Reply
      • 8. Diana  |  April 22, 2012 at 4:59 pm

        Thank you Friend from the Midwest for your comments and suggestions. I will ask my doctor about neurontin. It sounds as if you have to take this pretty frequently, i.e. several times a day. Is that correct? I will also check in to seeing an acupuncturist. I had some success with that several years ago but it was hard to determine whether it was really having any effect or whether it was something else I was doing. I’ll watch for any further postings from you. Thanks again.
        Diana

      • 9. Web Pixie  |  April 26, 2012 at 11:46 pm

        Hi Diana,

        I tried the search that I thought would help. I didn’t find what I had hoped to find but I did find this:

        http://sci.washington.edu/info/pamphlets/pain_sci.asp

        I’m not sure how much help that link will be, so I’ll continue to search for what I was looking for and post it here if I find it.

        Finding the above web site reminded me of what one doctor said to me several months after the diagnosis. She was probably the 8th doctor I had seen since I first went to anyone about my symptoms. She asked, “Has anyone ever actually told you that you have a spinal cord injury?” I was shocked! I had had MRI’s, surgery, three kinds of physical therapy, nerve conduction studies, myelograms – I don’t even remember what all – and she was the first physician perceptive enough to realize that no one had ever actually come out and told me what was really going on AND that it was important for me to know.

        I had looked up the word “myelomalacia” long before that, but all I could find was that it was a softening of tissue. I could only surmise that it had something to do with nerve tissue because of the “myelo” part of the word. Just knowing from her what was really wrong and that she cared enough and was not afraid to tell me went a long way. I suppose the doctors before her just assumed I could figure it out when they showed me the MRI’s and that there was no need for them to have to say anything. It scared me to hear this from her but it also motivated me, for lack of a better word, and made me thankful for every little thing I could find to be happy about.

        As for neurontin, it may not work for everyone but if you and your doctor decide to try it and it helps – that’ll be great! You are correct that I do take it rather frequently but, wow, can I ever tell if I happen to forget and take it more than an hour or two late!

        The way my neurosurgeon first prescribed it was different from how I’m taking it now. It’s still a rather high dose that I take, but it’s less than when it was first prescribed. Back then, it was 900mg at 8AM and at noon with 1200mg at bedtime. I felt pretty dopey much of the time and I read somewhere that was the maximum dose that should ever be prescribed (although I’ve since read that’s not necessarily true). So I take about 20 percent less now, but more frequently …600mg about every 6 hours. That’s just what works for me. From what I’ve read, some people need much less while others need more.

        That other medication I mentioned that I couldn’t remember before was Lyrica. I’m not sure why anyone tried to switch me to that because the neurontin was working quite well enough. Maybe that doc thought the Lyrica would work better but, for me, it didn’t. At first we thought we tried to taper off the neruontin and on to the Lyrica too fast. When we tried switching over more slowly the second time, I had dopey side effects again PLUS hand pain and those involuntary movements that I was no longer having after taking neurontin for awhile.

        So we quickly tapered back to neurontin-only and things have been as good as they’ve ever been ever since. Lyrica apparently does work for some people, but everybody’s different and it just didn’t work for me as well as neurontin does.

        I really understand what you mean about not being sure if acupuncture worked or if it was something else! It’s so subtle! At the time, I was also seeing the physcial therapy physician who ran that very controlled, “progressive” program using (among other things) weight machines like you would normally expect to see at a gym or health club. She’s the doctor I mentioned earlier as probably the 8th doctor I’d seen since the myelomalacia symptoms began. She also made suggestions for improving nutrition, like including lots more fruits and vegetables along with an omega-3 fatty acid supplement and a prenatal vitamin (of all things!). So with that along with acupuncture and other things that I probably don’t recall, it’s hard to know what really helped turn the corner.

        Maybe it was just time. Maybe it was a combination of all those things plus the natural healing process – such as it is with myelomalacia. I’ve been told time and again that it’s permanent, but I’m very thankful that it’s become manageable and somewhat tolerable. My husband remains hopeful that technology will produce something more like a cure, and I’m thankful that he does for the sake of everyone with all the varying degrees of myelomalacia.

        Please keep us posted on how you’re doing, Diana, whenever you like. I hope it’s all good.

  • 10. Web Pixie  |  April 29, 2012 at 9:09 pm

    Gee, everything I wrote yesterday
    is really L-O-N-G!!!!

    Sorry, all!

    Reply
    • 11. John Collier  |  June 13, 2013 at 8:31 am

      Your comments give hope and comfort to others

      Reply
  • 12. Diana  |  April 30, 2012 at 6:42 pm

    Thanks Web Pixie for all your thoughts. I have stopped taking any of the medications such as Baclofen for muscle spasms (which I’m pretty sure does nothing) and Meloxicam which is for pain and inflammation. However, I think plain old extra strength Tylenol does just as well.
    I am reluctant to even go back to a doctor because the last time I went they scheduled me to have knee surgery (for a torn meniscus). That was another whole unsatisfactory saga. But obviously the knee surgery did nothing did nothing to address the myelomalacia issues.
    These days I just hobble around as much as I can to keep somewhat flexible. I’m hoping for an opportunity to join a few other women to go to the gym regularly. Going alone takes too much self discipline. So we’ll see how it goes.
    I’m glad your husband is supportive. Good luck.
    Diana

    Reply
    • 13. John Collier  |  June 13, 2013 at 3:45 pm

      Please let us know how you are these days

      Reply
    • 14. Web Pixie  |  June 14, 2013 at 5:41 pm

      It’s been over a year since you posted this, Diana, so I wonder if you’ll see this. If so, I’d like to know how things are going, or went, with the physical therapy. I have a prescription for more of that – which I still need to call and schedule.

      Seems I got rather frightened when I took a very short ride with a neighbor in her Jeep. I was really reluctant to go but I hopped in anyway and told her maybe it won’t be so bad if she drives slowly. Really, we only drove a couple miles to where we were going but was it ever painful! Then she started driving faster, saying she thought it wouldn’t hurt for as long if she drove the short distance faster. Good grief!

      It hurt for weeks, so it was really scary. Things had been going so well up to that point and now this! I thought for sure it was from the “weakened” discs above the fusion bumping on my spinal cord like the one that had been removed had done. The consequences of that could be really bad if in the wrong place, I thought …like not having the muscle activity needed to breathe! A person can anticipate all kinds of horrible things with access to only limited information.

      I finally made an appt. to see one of the docs I trusted to be knowledgeable and straight with me (they’re so hard to find). He did x-rays and told me that I had some arthritis in that part of my neck and that was the cause of the pain. I asked him if there was any way to “protect” the discs that an earlier MRI showed to be starting to bulge or protrude there – and that’s why he gave me the physical therapy ‘script.

      There is a new gym in our area, so I was thinking about asking the physical therapist if she would recommend that I start going there and, if so, was there any equipment there I should be careful to avoid. So I’m curious – how has going to the gym worked for you? Has it helped with the muscle spasms?

      I am really impressed that you said last year that you had found that just plain old extra strength Tylenol worked at least as well as the prescription meds. Then again, you said those prescription drugs didn’t do much for you.

      Just as an update for anyone who reads this: Since I wrote my comment to your comment last year, Diana, and a few months before my “wild ride in the Jeep,” the neurologist suggested I try cutting back on the Neurontin. He had prescribed Baclofen (10 mg at bedtime) a few months before that for some lower extremity clonus I had observed and some involuntary finger movements that hadn’t happened in years prior to that.

      I can’t tell if the Baclofen worked or not, although I haven’t had those symptoms lately. It was after I had been taking the 10mg Baclofen that he suggested I try cutting back to just 3 times a day with the Neurontin instead of 4. It seems to be working! I can tell after about 10-12 hours if I’ve forgotten to take it, but that’s lots better than before. I’m not sure if it’s the Baclofen that’s helped with the reduced Neurontin dose or not – maybe it’s just a placebo effect with that low a dose, but who cares! Whatever works, right?

      I’m sure this has turned out to be another too-long comment, so I hope my main purpose for writing it isn’t lost: How has the gym helped with your muscle spasms, Diana? Assuming you found some “gym-buddies” to go with you, how have things been going for you otherwise since your last post? I wish you all the best.

      Reply
      • 15. Diana  |  June 14, 2013 at 6:09 pm

        Sorry to drop out like that. I didn’t realize that I have a ‘following’! Smile.
        My symptoms have gradually increased. The muscle spasms in my right leg continue. I feel more and more pain in my right hip, I believe that’s more due to bursitis in that area than arthritis or anything directly attributable to the myelomalasia. . My gait is very rickety but I’m still ambulatory without a cane (although it’s been recommended).
        Recently I went to a doctor who explained something that I had felt intuitively. She said physical therapy will help strengthen muscles that have NOT lost their central nervous system communication. In the past I was told that if I just worked hard enough the nerves that are declining could be ‘regenerated’. However, that is not correct. Damaged peripheral nerves can sometimes regenerate over time, but damage to the central nervous system, i.e. the brain and spinal chord, do not regenerate.
        The damage to my spinal chord occurred when I had a tumor removed from it 35 years ago. It is not an on-going or increasing damage that one might sustain if you have spinal vertebrae or disc problems currently.
        I continue to go to the gym because the better condition all my remaining muscles are in the longer I can continue to be mobile.
        As far as medications go, I continue to use just over the counter meds for pain. The Bacolfen comes in 10mg tablets but a pharmacist told me that you can safely take up to 20mg. but I don’t think it does anything so I don’t take that any more. Another doctor told me to supplement my magnesium and potassium intake to help reduce the spasms.
        Good luck everyone. I am off to the gym now.

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  • 17. John Collier  |  June 13, 2013 at 8:30 am

    I have cervical spinal stenosis and myelomalacia,my only symptom is a tingling in my fingers of the L hand,though I did have on and off pain some yrs ago when I had a sports injury believed to be the cause.Despite my mild symptoms my prognosis is not good ,without surgery the outcome will be paralysis,with surgery things could stabilise but I have read many many case histories on here ( Internet) where there has been little or no improvement and some have felt worse and even regretted surgery. Some people are very vocal in encouraging others to have surgery,others say wait and see,and others are highly sceptical of surgery BUT one thing we are all agreed on, every damned one of us………cervical spinal stenosis and/ or myelomalacia is a terrible terrible thing to have and it is a devastating diagnosis.

    Reply
    • 18. Web Pixie  |  June 14, 2013 at 6:29 pm

      IMHO it all depends so much on the particular individual’s case and even more so on the particular surgeon if surgery is “recommended.”

      With most of them, it seems, it’s like – to a hammer, everything looks like a nail. With some, it’s “Well, I’m on call tonight so I might as well do this.” (Honestly, that’s what I overheard when the first surgeon I was referred to was talking on the phone to the neurologist who referred me!) With others, it’s more like “Let’s wait and see, but we let’s watch and make sure we don’t wait too long.”

      One thing for sure – if you get a referral for a surgical “evaluation,” it seems that it’s always to determine WHEN and not IF the surgeon thinks you need surgery …which may be the best reason to look for a second opinion. If anyone who reads this ever encounters a surgeon who DOESN’T recommend surgery, I hope they post it here.

      I’m very thankful that I finally did find some docs I trusted and who were also competent. That a couple of them turned out to be surgeons, well – it was what it was. It would’ve been obvious to any lay person looking at my MRI. That’s certainly not always the case for everyone and it’s never the case with a hack of a surgeon.

      Skepticism can be healthy. Second opinions can be crucial. Recommendations from former patients, when possible, can be the most helpful thing of all. (That goes for patients of surgeons, acupuncturists, neurologists, chiropractors, family practice docs – all of them).

      My husband keeps telling me there will be a stem cell solution to this. He’s such an optimist, God love him. Maybe for the worst cases, at least, let’s hope.

      Reply
  • 19. Carla Garcia  |  June 19, 2013 at 6:05 am

    I have been experiencing these symptoms a year and a half after giving birth yo my son; it was a c-section so an epidural was given is there any connection with the medication given and the disorder

    Reply
    • 20. John C, UK  |  June 20, 2013 at 6:57 pm

      Carla….I have been researching myelomalacia for the past few months , and my guess would be that there is no connection. It is usually from trauma, and in certain cases there is a case for hereditary possibilities.
      Unless a doctor tells you that you have this complaint, don’t jump to conclusions as you most likely don’t have it.
      I would pray to God or to who ever you believe in , that you don’t have this dreadful condition…….yes , it is that bad.

      Reply
  • 21. sheila  |  September 3, 2013 at 12:30 am

    The comments here are so interesting. I suffer with spinal cord deformity with a focus on myelomalacia. I have severe pain in my left shoulder and arm and neck pains. I live in the Midwest now and have researched a few pain specialist…Boy everyone seems to know the answer and can fix the problem. I also checked on some neurosurgeons ..they all advise surgery… Has anyone had a procedure done before…the epidural injection….I am soooo afraid of surgery…..some stories have not been very encouraging….. Thanks Sheila

    Reply
    • 22. Web Pixie  |  September 3, 2013 at 5:37 pm

      Welcome, Sheila! The epidural injection does help many people but I don’t know if there is any way to tell in advance if it will work. I have had those injections a number of times. In my particular case, it did not help in the area where my myelomalacia is, but that doesn’t mean it doesn’t work with myelomalacia. I later had the same kind of injection in another part of my spine and it worked really, really well! I realize this answer doesn’t shed any light on your question. :(

      May I ask how long you’ve had this condition? I wish you all the best, Sheila. :)

      Reply
    • 23. John Collier  |  September 3, 2013 at 6:41 pm

      By surgery i presume you mean spinal decompression….I am now 3 weeks post op and despite some ups and downs since surgery ,this last week has been much better and today was my first day without painkillers . If all of the neurosurgeons you have visited recommend surgery you will have to give it serious consideration….of all those commenting on here no one was more afraid of surgery than I. So I do have empathy with you. Whilst some people’s experiences have been negative I really did my homework and research …..and I went for the surgery.

      Reply
      • 24. Web Pixie  |  September 4, 2013 at 9:23 pm

        I also ended up needing the surgery. I was scared to death to have it. I hoped that the early symptoms would just resolve on their own but they didn’t. When I started getting new symptoms, a physician/relative urged me to get the surgery before I “lose more function.” I’m glad I listened to her and now only wish I’d gotten the surgery sooner.

        The epidural injections I tried came later – another story for another time, maybe.

        The bottom line from most of what I’ve read is that myelomalacia is CAUSED by something. It doesn’t just happen by itself and it’s important to remove the cause of it, if possible, so that no additional spinal cord damage can occur.

        Getting the diagnosis is a huge first step! I wish that had happened for me. I lived with unexplained sensations in my wrists and legs for several months until one day I tripped and fell just running down the hall for the telephone …or at least it seemed like I tripped. I tried to get up and fell again. About 2 months later I finally found a doctor I trusted and he gave me that diagnosis. It took him almost a month for him (and my sister-in-law) to convince me to have the surgery. If they hadn’t done that, I would probably not be walking at all right now – much less the few miles a day that I usually do.

    • 25. Web Pixie  |  August 3, 2014 at 10:30 pm

      I know the epidural injections do help with some spine issues but myelomalacia is something akin to a “wounded spinal cord.” Whatever is causing the so-called “wound” must be addressed before it causes more extensive damage to the spinal cord. Surgery is scary so it’s important to have a surgeon you feel comfortable with. I had a neurosurgeon who was highly recommended by a relative who had been through surgery with him after a very bad automobile accident. I only wish I had had the surgery sooner.

      Reply
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    Reply
  • 27. Michele Greiner  |  February 24, 2014 at 3:08 pm

    I too have compression myelomalacia. My symptoms where the feeling that my legs weighed 80 lbs apiece when walking up stairs and electrical jolts shooting down my lower spine. I had surgery–cervical fusion of C5, C6, and C7. This procedure is called a Corpectomy. My permanent peripheral nerve damage is from the waist down, loss of sensation more noticeable in my feet and inner thighs–also referred too as saddle bag anesthesia. I now am having increased spasms in both feet. Mine is more noticeable in my right leg, as is my leg weakness. I am now taking Gabapentin 400mg in the morning and afternoon and 600mg at bedtime and Baclofen 20mg three times a day. I can tell you this has helped with the symptoms. When the next dose is due I can tell because of the worsening of the symptoms. I feel fortunate that I had surgery to relieve the spinal cord compression when I did or I know I would be much worse off than some other people. I have osteoarthritis and have also had lumbar spinal decompression surgery to L2 and L4. I hope this helps someone to understand that this is a spinal cord injury with permanent nerve damage and my surgeon told me that nerve regeneration from the myelomalacia injury could take up to a year and generally after a year, what return I did have would be it.

    Reply
    • 28. Web Pixie  |  February 25, 2014 at 5:42 pm

      How recent is this, Michele?

      Reply
  • 29. John Collier  |  February 25, 2014 at 5:32 pm

    Your symptoms seem very severe….I did understand it was spinal chord damage causing permanent nerve and tissue damage. I sometimes have difficulty getting through to the members of our CSS group how serious this is.

    Reply
    • 30. Web Pixie  |  February 25, 2014 at 5:46 pm

      Myelomalacia is a serious condition, no doubt about it. It can be manageable and sometimes the predictions our doctors give us are more pessimistic than reality turns out to be. That’s not to say it isn’t a real challenge to deal with all the changes.

      Reply
  • 31. John Collier  |  February 25, 2014 at 6:26 pm

    Web pixie ….you would no doubt be of great help to many on the Facebook group ..cervical spinal stenosis

    Reply
    • 32. Web Pixie  |  February 25, 2014 at 7:28 pm

      John, I keep meaning to email you my email address for that. Thanks for the reminder (and the compliment). I’ll send it to you right now. Cheers.

      Reply
  • 33. Jacqui Engel  |  June 26, 2014 at 4:18 pm

    So good to find and read this site! My husband is 30 days post surgery for 4x laminectomy and cervical fusion c-3-c-6. The diagnosis of myelomalacia was frightening and confusing, with very little information out there (unless you are a dog!) He is in a hard collar for 60 more days, then rehab to build back the neck muscles. He has some improvement in many symptoms, better gait and increased stamina in his legs. This has been quite a journey so far, we feel extremely grateful for the surgery.. best wishes to you all!

    Reply
  • 34. Ralph Gilbert  |  August 3, 2014 at 2:26 pm

    I’ve read the articles here and found them all so helpful, I too have been diagnosed with myelomalcia through the VA hospital and clinics, the most unfortunate situation is they will not commit themselves on to when it occurred which I need to file a VA compensation claim, It’s a long story but now I have to go and find other doctors outside of he VA who can possibly pin it down, or say that I had it (and still have it during) from my active duty status, I went off of active duty in 1984, this is a long period of time for the VA to except my claim, I also need to find people that I was stationed with to say that I was in pain.

    Reply
    • 35. Web Pixie  |  August 3, 2014 at 8:48 pm

      Welcome to the forum, Ralph. I’m glad to hear that you have found it helpful. Please feel welcome to share the rest of your story as it will most likely be helpful to others. I’m so sorry to hear that the VA is not being more helpful – almost as sorry as I am to hear the diagnosis! I’m sure I cam speak for all of us who have written our stories here that we all wish you all the best. Take care and please keep in touch.

      Reply
      • 36. Ralph Gilbert  |  August 3, 2014 at 10:53 pm

        The rest of the story is: I was seen a couple of times by the VA in Des Moines Iowa, and really wasn’t pleased with them. I was referred by a friend to see an ortho of manipulation doctor. I was seen by an ortho of manipulation doctor at the University of Des Moines in Des Moines, Ia. This was done before moving to Davenport, Ia. in September of 2011 then I went to see my GP (who I have now) for the first time, he is with the VA clinic and hospital system in Iowa and because of my issues wanted to his own x-rays taken, the myelomalacia never showed up, I was given an appointment with neurology at the VA hospital in Iowa City, Ia, an EMG was given and the abnormalities were not enough, I then saw the neurologist and was told I had an unknown cause of neuropothy nothing more, I was then sent to the pain clinic where I received my first and only epidural, not because of my election to not have another but the 1st result only lasted maybe 3 or 4 months at the most, I was offered was a pain ointment but I had to refuse as most make me break out (one in particular) was a pepper kind of ointment. In the mean time and only because my wife was a nurse and takes gabipentin I might add I had to ask for it myself, I don’t know if I ever would have been prescribed it, In between these times I also had bone density tests done which all have come back abnormal. During the Christmas season of 2012 I took myself to the VA hospital with shaking and shivering and what really seemed like a nervous breakdown, but it was the myelomalacia causing the problem, not arthritis as the ER doctor told me.
        During the Christmas season of last year, after calling my GP concerning pain finally an MRI was taken, I was called by the neurosurgeons office for almost an immediate consult, making it sound like something major was wrong, I was informed of the myelomalacia for the first time,and also NO surgery was called for, I did have to pressure them further to take a second MRI of the C3 – C6 area, again NO surgery is needed. I am now in the process of waiting to see my a personnel GP on the 18th of August and I believe the 21st I have an appointment with a PA at an orthopedic surgeon’s office who my wife has used, to get a second opinion, also to see if they can write up letters for me to present to the VA Compensation and Pension Board, I also need a letters from as many people who I can come up with to prove I was in pain and why nothing was ever done in the past. I was looked at funny and told numerous times from doctors that this was a sign of old age setting in (I’m am now 60), pain started in 1974.
        I guess if there’s a lesson to be learned in all of this and I recommend this to Veterans especially, push as hard as you have to and never take no for an answer when it come to pain in the back and neck area, of course I recommend this to anyone,
        This site has given me insight to know what to expect and look for IF surgery is called for. Thanks for the info and being a part of your group, good luck to everyone out there.

      • 37. Web Pixie  |  August 5, 2014 at 12:34 am

        You’re absolutely right about pushing as hard as you have to, especially when it comes to pain in the back or neck area. The same is true for unexplained tingling or numbness in any of the extremities, although it’s not likely anyone with those symptoms would find this blog when they need it.

        No one could’ve possibly suggested your symptoms were old age setting in when you were 20! :D Were you in the service then?

        You have certainly been through a lot, Ralph. Those EMG tests are no fun at all, and then not having an MRI until just last Christmas is almost inexcusable. Still, it’s good that you did have it and you are very fortunate that your wife is a nurse. Our medical system is not easy to navigate so it helps when there is someone close to you with some familiarity. The VA has its own set of peculiarities but I believe the docs who work there are dedicated souls who do their best to get their patients the care they need while dealing with the confines of the VA system. At least that’s true of the docs I’ve known personally who have made the choice to work at the VA as opposed to private practice or exclusively in a medical school setting.

        Please take care of yourself while you wait for your appointments later in the month and let us know how things go. Myelomalacia is damage to the spinal cord. If whatever is caused the damage needs to be removed, that means it’s still there and can do more damage. If it turns out that the second opinion you get is that you don’t need surgery, that would be great! Please let us know if that turns out to be the case because it would be helpful to those who read this blog to know why. Of course it would be even more helpful to you to know that!

        I’m glad you’ve found this site helpful. Best wishes to you.

      • 38. Ralph Gilbert  |  August 5, 2014 at 1:46 pm

        I forgot to put in that I have solicitous and osteoporosis, the solicitous started when I was a child….it hasn’t been mentioned in any of the other posts I believe.

      • 39. John Collier  |  August 5, 2014 at 5:54 pm

        There are many myelomalacia sufferers on the Facebook group ‘ Cervical spinal stenosis’ and I have recently started as ‘myelomalacia’ Facebook group, the CSS group is well established and has been of great use to members.

      • 40. Web Pixie  |  August 5, 2014 at 6:59 pm

        John, thanks for posting this. I thought it would be good to note this but I couldn’t remember the name of the group. Do you still need an invitation to join the group? I am interested in your myelomalacia group as well. Thanks!

  • 41. John Collier  |  August 5, 2014 at 7:02 pm

    Web pixie…..you would be so helpful to others on the group…and if you need any help or advice, thus is the place for it…….just go on FB and ask to join the ‘cervical spinal stenosis ‘ group . It’s pretty easy to do, just find the group and ask to join.

    Reply
    • 42. Web Pixie  |  August 6, 2014 at 6:56 pm

      Hi, John! I just tried again and it says it’s a “Closed Group.” Here’s what I did: I was in fb and searched for cervical spinal stenosis. It took me to a page where someone named Bill is listed under Admins. I clicked on Join Group and got a msg that it’s a Closed Group. I left the page and came back and it said my request is Pending. How will I know if my request has been accepted? Or am I maybe at the wrong fb page? Thanks! Hope you’re doing well.

      Reply
      • 43. confederate man  |  August 6, 2014 at 7:08 pm

        Sent from Windows Mail

      • 44. Ralph Gilbert  |  October 12, 2014 at 7:33 pm

        there’s a good group called Spinal Stenosis on FB I’ve been a member for quite a while now and it’s real good, it’s also a closed group but doesn’t take long to be added.

      • 45. John c  |  October 12, 2014 at 7:37 pm

        If is a v. Good group and there is also my myelomalacia group on FB toohttps://secure.preloved.co.uk/eu?qs=JfkBZrgTL0Vi6zd22r3aZsjZVBVf9b0lacaURRg0HbKkLP9LGFOdKrbLJx80UUM0kAquV6sKwB1x3QutB-wz9g#

      • 46. John C  |  August 6, 2014 at 7:10 pm

        Once Bill sees your request you will be added…….should be in the next few days …..John

  • 47. Kathleen Mulholland  |  October 21, 2014 at 3:07 pm

    Hello. I was diagnosed with cervical myelomalacia two weeks ago. Today I have an MRI of my brain and thoracic spine to check for more damage. At first I thought I faced imminent premature death, but reading these posts makes me feel hopeful. My symptoms are very similar to the ones mentioned previously. I look forward to acupuncture for pain relief – none of the nerve pain meds help, except prednisone helps a little, but it does not help the burning and spasming.

    Reply
    • 48. Web Pixie  |  October 21, 2014 at 5:01 pm

      Yes, I found prednisone to provide much relief too. Unfortunately, in my case, it was only given to protect the spinal cord from further damage while waiting for surgery by reducing the swelling around the spinal canal. I think there are side effects with taking prednisone for extended periods of time, but it’s a tremendous help while other tests are being done. Best wishes to you! Please keep us posted on your progress. :)

      Reply
  • 49. John Collier  |  October 21, 2014 at 6:18 pm

    I had acupuncture and it was of no use. There is a facebook group for Myelomalacia sufferers, I suggest you become a member…..the only med to be of any use was Diconal.

    Reply
    • 50. Ralph Gilbert  |  October 21, 2014 at 6:53 pm

      What is the name of the Face Book group?…I have Myelomalacia, and I have it with other back issues.

      Reply
  • 51. John Collier  |  October 21, 2014 at 7:53 pm

    I recommend both the facebook group ‘myelomalacia’ and ‘cervical spinal stenosis’

    Reply
    • 52. Kathleen Mulholland  |  October 21, 2014 at 8:07 pm

      I will definitely check into Diconal. I am pending on the FB groups. I look forward to learning from all of you.

      Reply
      • 53. Web Pixie  |  October 21, 2014 at 8:59 pm

        I found some relief with acupuncture but that was after I had thesurgery to remove the disc that was acusing the myelomalcia. Everone is different, of course.

      • 54. Ralph Gilbert  |  October 21, 2014 at 10:03 pm

        Hi Web Pixie….sorry I haven’t written anything yo you lately, but there’s not much to tell, the doctors seem to focus in on my spine issues and not the Myelomalacia that I have, about the only new treatment I am getting now is an increase of Gabipenton for pain, I’ve had a EMG done but nothing really new there either, so for right now I’m about the same still suffering for all the things going on, it gets frustrating, but I still stay positive.

      • 55. Web Pixie  |  October 22, 2014 at 7:04 pm

        So sorry to hear how you’re suffering but glad to know you’re doing your best to stay positive :)

        Those EMG tests can be so painful! I’ve had them several times now and they always come back the same. The myelomalacia is the reason for the pain in my hands and and wrists and the numbness in my legs. It’s a painful way to find out what we already knew, but it seems each new doc wants it confirmed. Fortunately, the last time was a couple years ago and I hope to never have to go through it again. My hubby keeps hoping for a stem cell cure and we recently learned of a local doc who does stem cell treatment for peripheral nerve issues. The spinal cord is considered the central nervous system so I am not getting my hopes up that she will be able to help with this. I plan to bring my past EMG test results with me this time.

        It is certainly good to hear from you, Ralph. I hope the increased gabapentin helps. Hang in there!

      • 56. Diana  |  October 22, 2014 at 8:18 pm

        Web Pixie and others who have myelomalacia,

        I haven’t checked in recently so when some new messages showed up in my mailbox I thought I’d give you an update. As you might remember I had a tumor removed from my spinal chord 35 years ago. For a long time my symptoms went away mostly for twenty years or so.

        However in the last year they have worsened significantly. My gait and balance are poor, although I have resisted using a cane because it just seems like one more thing to carry.

        Recently my shoulder and upper back have become progressively more painful, a burning harsh pain that includes my deltoid muscles on my shoulder. (It was interesting to read that this is common). So far I’ve been able to manage the pain reasonably well with Tylenol and the occasional Tramadol. I have the most discomfort at night when I don’t move for a while and then get all stiff and spasm-y in my legs when I change positions.

        In August I broke my hand, which has had to be in a splint for two months. If anything is immobilized for two months it takes a while to get back to full function, However, I’m fearful that my PT exercises have created a carpal tunnel problem because my middle two fingers on that hand get tingly and feel asleep or maybe this is part of the myelomalacia, too.

        Recently I went to a new neurologist and he said he’d like to start with some MRIs. So now I’ve had MRIs of my brain, cervical , thoracic and lumbar spine. I go next week to review what those pictures showed…if anything new.

        I live alone in a third floor walkup apartment that I love but I’m afraid ‘the writing is on the wall’. I’m going to have to find a different place to live soon and it may well need to be wheelchair accessible. That is all very depressing to think about.

        I, too, read about the stem cell success with the previously paralyzed patient, but agree, we may be a few years away from being able to have that option. Thanks for reading my story.

        Diana in Seattle

      • 57. Web Pixie  |  October 22, 2014 at 10:59 pm

        It’s great to hear from you, Diana! I’ve been wondering how you’re doing.

        I hope your physical therapist and address the issues with your middle fingers before they “spring” you! It’s probably good that you’re seeing a new neurologist. I will keep hoping for the best for you. Would hate for you to have to leave that apartment that you love so much.

        Take care :)

  • 58. John Collier  |  October 22, 2014 at 7:12 pm

    I believe any stem cell cure…if one is possible….is decades away. However this week a paralysed man was able walk again after nasal cells that reproduce well were placed into a damaged spinal cord.

    Reply
    • 59. Web Pixie  |  October 22, 2014 at 7:47 pm

      I agree with you, John, yet my husband remains optimistic – bless him!

      I am not interested in doing anything experimental. If and when such a therapy is deemed SAFE and effective, I might consider it. Until then, things are stable enough and the pain manageable enough for me to be satisfied that things are no worse than they are and to let it all be.

      That said, I’ve agreed to see the doctor who does the stem cell therapy about an unrelated issue because I’m told she is very good with ultrasound imaging. The issue is with my knee and I’m hoping she will simply send me to a physical therapist. Because hubby is so hopeful, though, I do plan to ask her about progress in the area of stem cell therapy for the treatment of myelomalacia.

      Reply
  • 60. John Collier  |  October 22, 2014 at 8:40 pm

    Feel free to join our Myelomalacia facebook page

    Reply
    • 61. Web Pixie  |  October 22, 2014 at 11:01 pm

      Hi John,
      I’ve tried to access your myelomalacia facebook page but the link takes me somewhere besides facebook. Does that make sense to you? Do you have any suggestions about what to do? Thanks!

      Reply
  • 62. John Collier  |  October 23, 2014 at 8:11 am

    How odd…..shouldn’t be a problem

    Reply

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