Hi,

    I'll paste previous parts of 'backstory' below this message for context.

 

The Neurosurgeon in Chicago was impressive, very gentle, patient, kind and people-oriented.  He  recommended cervical disc replacement and fusion (with titanium plate or pins) in a "few" weeks unless symptoms get worse.  He went over the risks and explained one other non-surgical option (traction) but that 9 out of 10 neurosurgeons would say my symptoms had already gone beyond that working. 

 

 The problem with surgery so soon is that my myasthenia doctors are wanting to get my immune system better and me feeling better I suppose so they seem to want to  put it off six months as they try new (to me) medications (immune modulating) --  We will not know if these will work for 6 months, they take that long to show, that's the downside of the wait, I guess we just hope my cervical problems don't grow worse in the meantime.. I'm not sure what their thinking is on that. 

 

My worry, not theirs is that the surgery will be in Chicago and I live 150 miles away, with many logistical and support issues problems involved. The doctors  do not concern themselves with this and I cannot find resources that seem to address these issues. It all seems to go unanswered in our society or my community, as if no one ever has these issues, or everyone can just afford to hire it all done, or that insurance will take care of it all.  I'm betting the latter is not the case, and the former is not at all the case in my situation. It is all very much a worry.

 

The neurosurgeon said they would not want me taking the train back home after the surgery, but I do not see any choice. I would not have anyone to drive me there or back. It was a gruesome trip just for the visit. The train trip, coping with Union station, and the city, took lots of energy just for a simple doctor visit when I was mobile. 

 

I'm have questions I need to address with the neurosurgeon.. he talked about the disc problems, but did not mention the stenosis that my neuro noted was on the MRI, what I've read of the surgery it does not seem like this surgery corrects the stenosis so I'll have to ask --then what is the likelihood of other disks going bad.. it is weird that my bad disks skip over one.. that is that I have a bad one.. then a good one then a bad one.. is that an odd pattern?    Then I need to ask they keep saying the lumbar disk protruding is not as bad a problem, but is causing the leg pain and burning, tingling and walking problems... so what can be done about that?  I realize it may not be as damaging now as the cervical problem.. but might it get that bad while I'm sitting around waiting?  No one is suggesting what to do in the meantime while it hurts.   I do take some pain medications  and topamax but it is not controlling it.

 

Thanks for listening,

Best wishes to all, have a nice weekend

KD

     

 

--- my previous 'backstory'-

 

I was diagnosed by my local neurologist with cervical myelopathy and other terms such as stenosis and spondylosis and in a few different areas ...  c3- c5 and c7..   also some lumbar problems but they didn't seem to cause such alarm.  ...In the last few years I've also been diagnosed with generalized Myasthenia Gravis (MG) 

 

Iin the last months the pain in legs and arms and shoulders have been so severe (burning, tingling, numbness, stumbling, dropping things losing balance, muscles tensing to the extreme, cramping).  I've been reporting back pain for years.  My local neurologist ... glimpsed problem in a few moments by listening and watching me walk, ... ordered MRI's ...been referred to a neurosurgeon in Chicago at UI-C ...My neurologist feels certain surgery will be recommended but doesn't know when or what kind.. he doesn't want anyone locally doing it...Surgery is a problem with Myasthenia....I tire easily (major muscle weakness and fatigue from Myasthenia....it effects breathing) ..  

 

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.... waiting could create more damage that won't be correctable.