Cervical Myelopathy symptoms
I have a very complicated medical history the last 5 years ~ It kinda started with severe osteoarthritis in bilateral hips - so I had 'em replaced end of '05. Things went well aside from the fact I had trouble rising out of chairs and was denied by my surgeon to have PT. I insisted and began water therapy ~ they 'fired' me because I could not meet their protocols because of severe knee pain. Okay fine - so 3 years later I have bilateral knee replacements. This recovery is where the problems began.
Afterward I could not use my right leg -- meaning I could not get the leg in a car, go up a curb - the hip flexor just wouldn't allow me to use the leg. 7 mos. of PT and it finally came back - though lots of pauses and thought process go into going up a curb even now. It can be done - but it's like there's a delay in my brain to the muscles or something.
Next I began with pain in my hands, elbows, shoulders, neck and of course bilateral new knees. Soon I had foot pain and tingling bilaterally. I was a flipping mess as they say - but no reason for it! For two solid years I've sought answers - counseling the best docs in America. I can no longer work at my profession & am in the disability system - something I abhor but am nonetheless very greatful for.
Recently it has been proposed that I have an underlying connective tissue disorder - Ehlers Danlos Syndrome. That was nice for explaining new and chronic pain in mid-life ~ Dr. Brad Tinkle has written nice affordable written books on the condition and I sought his input as well as others in the genetics field.
Still though - my legs aren't 'right' -- I have to push myself out of chairs with my arms - and my arms suffer from doing that - as do my hands and fingers. They hurt all the time and I have pain management helping me tackle this new widespread chronic pain issue.
Somewhere in all this I was sent to an arm ortho - who determined I need a neck MRI - it came back and he sent me to a spine expert who said, "that's a normal 53 year old neck" -- even though the arm ortho thought otherwise...
Fast forward - one of the EDS specialists had me see a neurosurgeon who believes all of my leg and arm issues - the weakness and clumsiness - along with urinary frequency, nocturia, constipation are from my neck. Cervical Myelopathy - and he wants to fuse three levels along with foraminotomy's.
I though the urinary issues were from being overweight and over 50. The constipation from the pain meds. BUT I have no explanation for symptoms that move from mild to "I know I have MS or ALS - I feel like I'm slowly dying" ....
The kicker is that none of my pain from the neck is bad at all. It's mild. In fact all of my pains bodywide in the joints - from myofascial pain to arthritic pain to neuropathic pain -- is mild to moderate -- when it's a symphony all going at once - head to toe so to speak it can be overwhelming but that's when pain medicine helps immensely.
I read the MRI, the CT scan in flexion and extension - and the one area of concern is primarily C4-5
There is disk herniation abutting and possibly mildly compressing the cord - with severe bilateral foraminal stenosis. The area above has mild disk issues and mild foraminal stenosis - the area below is a bit worse with severe disk degeneration and osteophytes and severe left foraminal stenosis but no cord compression.
So then I ask him - what happens if I choose to do nothing - as every surgery to help me has me get worse functionally. He says worsening of leg weakness, arm clumsiness, eventually in a wheelchair and then functional quadrapalegia. EGAD. Are you for real I'm thinking?
So - mild to mod. pain. "possibly mildly compressing the cord" on one level --- Yet my body symptoms spell Cervical Myelopathy quite well.
Then he furthers that my spine area is to be normally 8mm......mine is 4mm.... I guess congenitally narrowed and then this other issue? I think he meant 4mm at the area of c4-5.
I joined the community here tonight and read that most if not all of the candidates for surgery and those that have had surgery have had severe pain with a capital S -- and were hungry for surgery to help alleviate any of their pain. Yet in the end - the surgery post op is no cake walk - they have new and strange pains additionally to the old ones -- if not immediately - then within 5 years.
I feel I would be crazy to have this surgery . Truly. Yet when a very very prominent surgeon in the USA who is well versed in this procedure and in my other health issues tells me to do nothing will have me in a wheelchair -=- I so identify with that interiorly. That's exactly what it feels like. No exercise - no nothing helps me for long. I stop exercising I am back to square one - if I keep exercising I'm doing it out of fear - and the pain it creates worsens everything.
So even so I read that if you have myelopathy for over a year - the chances of it fixing your issues is slim - additionally I read that you need to fix things fast to avoid permanent damage from an injured spinal cord.
What would you do? Have any of you had SSEP's or SomatoSensory Evoked Potential testing done? Were the results helpful? I guess I feel all of me has EDS - so to focus on the neck - is silly as the rest of my spine isn't that great either. I've yet to have the thoracic are imaged - but that's where I get bad spasms and pain - the lumbar area is messed up too - with cord issues but not as bad as the neck ... Sigh.
Thanks for listening - Maybe you can identify with part of this story? LOL - Happy New Year!