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I'm new to this group, I don't think I've posted yet.. If so, please forgive me.. if I did it wasn't much and weeks ago. I was diagnosed
by my local neurologist with cervical myelopathy and other terms such as stenosis and spondylosis and in a few different areas, i recall c3- c5 and c7.. There were also some lumbar problems but they didn't seem to cause such alarm. This is all 'greek' to me, but still scarey. In the last few years I've also been diagnosed with generalized Myasthenia Gravis (MG) so my doctors were merely dismissing a lot of neuro symptoms to the MG and saying I couldn't be having pain, as MG has no pain associated with it (which is a very simplistic view by the way). Later they threw in the dx of Fibromyalgia to account for the growing pain, and put me on neurontin but I could not tolerate it.Â
Iin the last months the pain in legs and arms, and shoulders have been so severe (burning, tingling, numbness, also stumbling, dropping things, losing balance, muscles tensing to the extreme but I'm not doing it, cramping). I made a nuisance of myself and the clinic just kept doing rounds of odd tests of every sort, arthritis, vitamin d, wheat allergies, you name it.. but never thnking of spine problems although I've been reporting back pain for years. My new local neurologist caught a glimpse of the problem in a few moments just by listening and watching me walk, he ordered MRI's and even had to fight the insurance company to get these done, they suggested he order physical therapy first!! I've been referred to a neurosurgeon in Chicago at UIC, coming up next week. My neurologist feels certain surgery will be recommended, but doesn't know when or what kind and he doesn't want anyone locally doing it. Surgery is a problem with Myasthenia, and travelling and being out of town is a problem for me as I have no support system or advocates. I tire easily (major muscle weakness and fatigue from Myasthenia, but it effects breathing as well) ..
Sorry to ramble and be off topic, but at any rate, while they do not have the Myasthenia under control, and the super specialist for that (also a neurologist) just tossed off the notion of neurosurgery for the spinal concerns without even looking at my doctor's notes, or the MRI.Â
My biggest worry beyond all above is a concern that the symptoms I'm having from the cervical problems now might not be corrected by the surgery, that the surgery might make things worse. But that waiting could create even more damage that won't be correctable. Are these reasonable worries? in general? Is it always a case by case kind of situation? My neighbor had back surgery for stenosis in a much lower area than mine.. hers was just above the waist.. .about 5 years ago, she had major care and support issues post surgery but her surgery was very successful.. she didn't have fears at all.
I see my local neuro tomorrow to discuss the Myasthenia specialist's recommendations, and to try to deal with that. There are other medical issues too, mostly autoimmune problems, I usually have intelligent questions to ask and can think through these things but I've been hit by too many things the last few years, I think that is the problem.. and I'm so tired of doctors with dismissive and bad attitudes that assume I'm stupid or to blame. Thank goodness there have been at least a few not like this.
Thanks for listening. Greg your description of your symptoms was very helpful, I too have had problems with getting anyone to help with pain, there are also a lot of medications I cannot take, and they just will not take the time.
Thanks again. Best wishes to you all.
KD
In a message dated 6/15/2009 11:08:38 P.M. Eastern Daylight Time, g.nail@sbcglobal. net writes:
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Hello All.
My name is Greg. I was diagnosed with Cervical Myelopathy, myelomalacia, cervical stenosis, spondylosis, hypertrophy facet disease, degenerative disc disease, etc. I have been battling the symptoms and dealing with the effects of the disease and the surgeries since 1999. I've had 4 cervical spinal surgeries, but I have pain and problems throughout my entire spine. Like most I began having tingling in my fingers, I began dragging my right side & hunching over like Quasi Moto dragging my right leg. The more tired my body was the worse I dragged around. My legs felt heavy. I lumbered around like Frankenstein. At the time it was unknown to me but cervical stenosis at the C3-C6 level had gotten so bad it permanently damaged the signals sent & received between my feet and brain. What that did was make me fall when the grade of the sidewalk leaned to the side, forward or back. I would lose balance and stumble, often times unable to get my footing back before I fell.
I was seen by several neurosurgeons and even 2 of the surgeons suggested a particular surgeon for this job. Both said and my neurologist agreed that he is the best in the area for this type of surgery. I went forward with him and had an ACDF (anterior disectomy & fusion) of C3 - C6 which worked great for about 6 months. My symptoms were all returning.
By month 8 my neurosurgeon was suggesting a second surgery to C7 and to clean up osteophytes that had grown back in the C3-C6 area. His suggested method was to do it from the backside, a laminectomy. I told him the solution was not to have a surgery every 8 months. After postponing a several months, due to several reasons, I became as bad as or worse than I was originally. During this delay time the neurosurgeon identified that C7 was severely herniated.
To make this story a little shorter, the surgeon failed to correct C7. I got worse and worse. The surgeon did everything in his power to avoid letting me know that C7 had NOT fixed. My next choice surgeon leveled with me what had happened by requesting and studying an MRI. He requested a myelogram but the stenosis at C7 had gotten so bad that the contrast could not even get past the area. I now had proof and he admitted only working on C3-C6 but now denied C7 needed any attention (although previous MRIs said differently) . He told me there was nothing else he could do for me.
I did not want to sue I just wanted to get fixed. I contacted 4 neurological groups around the country known for fixing "botched" surgeries. I was told I had 60 to 90 days to live due to my situation which now included the vertebrae tearing apart. Only 1 group of surgeon would accept my case. They were and are awesome. They did the final 2 corrective surgeries back to back on Sept 9 & 10, 2002.
Once again I am beginning to have my problems return but at least they saved my life and bought me 7 years with relatively stable conditions. Now I am beginning to have problems to the point I am having MRIs taken and sent to them.
I wish all of you hope and help. If I can be your friend or a sounding block I will. I certainly understand how difficult it can be as I have been at every stage from feeling fine to unable to hold things without dropping them, walking upright to walking with cane, in a wheelchair, walking upright again to using Loftstrand crutches to keep from falling again, etc.
I hope everyone's tests and procedures come out well. I wish you luck and great doctors.
Your friend,
Greg
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♥♥KD♥♥
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