I do know that I am not an expert on anything to do with myelomalacia. I started this blog with the hope of learning more about it and, if I did, to share it here with others.
When I was first given this diagnosis, all I was told when I asked the doctor for more information was how to spell it. Wikipedia didn’t list it (it does now) and I could find virtually little about myelomalacia using Google or Yahoo! or any medical search engine I could access.
I felt so alone.
I felt as if I had been given a diagnosis for something so rare that nothing was written about it. I could find nothing that could tell me what I could expect in the future or what I might be able to do to maximize any improvement I could reasonably expect. I didn’t even know which of my symptoms were the result of myelomalacia and which ones might be from something else!
Drastic changes in life can be really scary, and all the more so when you are given incomplete information. Physicians are human. While they are trained to give bad news, it’s less difficult for some than for others. Maybe doctors are also trained to gauge what a patient in front of them will be able to accept …or maybe that’s just letting those who are less forthcoming off the hook too easily.
Maybe some doctors believe that what is obvious to them is obvious to a patient who seems well-informed, perhaps without realizing that denial is a very powerful thing when facing something very serious that seems too unbearable to believe.
Besides the diagnosis, the only thing the neurosurgeon told me after surgery was that whatever improvement there was two years after surgery would be the only improvement I would ever see. (Fortunately, improvement did continue after those first two years.) I did not learn of the diagnosis of myelomalacia prior to the surgery but, when I asked, he told me what function I would lose if I didn’t have the surgery …which finally did scare me into having it!
That was my experience with the surgeon I liked! He ultimately did the surgery some time after I had made an appointment with him for a 2nd opinion.
The first surgeon I was referred to scared me out of his office and into pursuit of that second opinion. His assistant had told me what would happen to me if I didn’t have the surgery that very afternoon, when the only reason I thought I had been referred there was for a consultation – NOT IMMEDIATE SURGERY!
Since it had been some time between when the referral to this surgeon was made and the appointment, I thought what his assistant was doing was using scare tactics. This was particularly true because when I had earlier told the surgeon that I thought my insurance company would want me to get a second opinion, he held up the MRI and told me “no insurance company in the world would deny surgery for an MRI like this!”
That response made me think he was more concerned about what my insurance company would pay him than he was about what was in my best interest. This was my NECK where he said I needed the surgery and I could see no reason why I wasn’t given an emergency referral if it was such an emergency now that I had to have it done IMMEDIATELY.
The worst of it all, though, was when that first surgeon told me that the surgery he wanted to do wouldn’t make me any BETTER, it would only help me from getting WORSE. My thought in response to that information was, “What kind of attitude is that!” I didn’t want someone with such a pessimistic attitude and lack of confidence removing a disc from my neck that obviously so close to my spinal cord already.
I wish now that I did have the surgery then, although I wish I would’ve been referred to the neurosurgeon who ultimately did do the surgery. I lost quite a bit of function in between that first “consultation” and when I finally had the surgery. I was suffering from a lot more pain by then too.
I still have no idea why the neurologist who did the MRI and made that first referral sent me to an orthopedic surgeon instead of a neurosurgeon, considering where the injury was and what needed to be done. Had that happened, I would’ve received a much more favorable review from the people I contacted for their opinions about the doctors involved. Then I may not have been so afraid to have the surgery sooner, when the end result had the potential to be somewhat better. It probably wouldn’t have taken so long to regain the function I have now.
In fact, maybe I would have MORE function now. Maybe the lows following surgery wouldn’t have been so low, that the function I temporarily lost after surgery would have never been lost. Maybe the neuropathic pain I battle with now wouldn’t even exist.
Of course, none of that matters now. I’m glad I had the surgery by the surgeon who did it. I have since been acquainted with people who’d had similar surgery by that first surgeon I saw and it would seem that his pessimistic attitude became a self-fulfilling prophecy for them.
The neurosurgeon was very confident and efficient, but not in any way pushy or condescending. He was very busy, but I always felt that I had his full attention when he saw me. I felt that he was completely on my side with a sincere desire to fix what was wrong and put me at ease. His staff was very patient in how they dealt with all the other issues I was dropped on their doorstep during that period.
It’s a very difficult thing to deal with such a sudden and dramatic change in one’s health and abilities, both for the person experiencing it and in a very different way for a spouse. It coincided with a very difficult time in our marriage, so there were a lot of issues I was forced to either deal with alone or talk to someone besides my spouse about.
The neurosurgeon’s staff was fantastic by being willing to listen when the issues were clearly not surgical ones. I can’t imagine that the people I met at the first surgeon’s office would have been so generous with their time and attention. I regret that I felt that I needed so much time and attention back then, but I am so very grateful that it was there.
Maybe it’s not really letting anyone “off the hook” by attributing the lack of more detailed information to a doctor’s ability to gauge what a patient is prepared to handle at any given time. When I was finally referred to the last specialist who treated me, maybe she could tell that by that time I was ready to hear the stark details …or maybe she just knew it was easier for her to communicate with an awake and conscious patient that it is for most surgeons.
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.
“Early stage myelomalacia may be reversible, depending on the severity of the initial spinal cord injury. Magnetic resonance can serve as a useful tool in the assessment and management of myelomalacia patients.”
This statement was based on a study of 42 myelomalacia patients The abstract did not mention what, if any, therapies led to improvement in the group of early stage myelomalacia patients.
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.