@ray666 I think you are in a situation where it is hard to know what problem is causing your symptoms or if it may be a combination of things. Cervical stenosis does cause problems like balance issues, dizziness and vertigo, lower body pain and actually pain anywhere in the body, weakness in legs, uneven gait and problems with incontinence or normal emptying of the bladder or bowel and many surgeons miss that connection. That is the problem I had in finding a surgeon to help me, because they didn't understand that connection until I found this described in medical literature and came to Mayo. Have you thought about the possibility that the cervical stenosis may be the cause of the neuropathy? It also may not be. How did this develop? Was there a spine injury like a whiplash? Did a spine injury happen before the lower body pain began?
The surgeon doesn't know for sure, so he can't make any promises, but that's OK. My surgeon didn't promise to cure my pain either, but cervical spinal cord decompression did solve the problem. The big clue I had was that I had an epidural injection that stopped all the pain I had all over my body temporarily, and then it slowly came back as that wore off over a few weeks, but there were 5 or 6 totally pain free days. I also had a lot of details on how this developed for me over a few years. I knew the all over body pain was connected to my cervical stenosis even though there is no diagnostic test for this. My fusion at C5/C6 did solve all of the pain I was experiencing which proved that it was generated by spinal cord compression.
My other question is about the about the wait and see approach. Will the neuropathy obscure worsening of the symptoms that are coming from the spine? If these are separate problems, neuropathy could prevent the normal warnings that would come from pain if there were no peripheral neuropathy. When damage shows up on an MRI, it may not be reversible with surgery. Surgery can prevent something from getting worse and it can also leave you in more pain than before surgery. It is a big decision and you need to know from your surgeon an accurate assessment of your condition. Surgeons cannot tell you exactly when permanent nerve damage will occur if the spine is not decompressed. What if there is no change in symptoms, but the MRI imaging starts to show nerve damage within the spinal cord? Would that be the indicator to proceed with decompression? Is that really worth waiting for? For a patient who does not have dignosed idopathic neuropathy, waiting for damage to occur just doesn't make sense. I know in my case, an earlier intervention gave me the best chance to not have lingering nerve pain after surgery. That is the result I have with a very successful recovery. I also had surgery with out hardware, and I know from a later experience with a fractured ankle, that metals inside my body were causing additional pain, so that was a good choice on my part and my surgeon made that solution available to me.
Good morning, Jennifer (@jenniferhunter)
Thank you for such a careful reply! I have tried going over all of the points you make with equal care.
I believe it is so true for many of us with idiopathic PN, and especially those of us with additional conditions, either related or unrelated, to know which therapies may help relieve some if not all of our symptoms. That's undoubtedly the conundrum I'm facing with my PN and cervical stenosis. You do refer to pain throughout your post. Here's where we encounter one of my situation's oddities, the source of considerable frustration when I speak with my clinicians, notably when I'm presenting for the first time: I have no pain. I have neither pain that I can associate with my stenosis nor pain linked to my PN. I only learned that I have cervical stenosis due to the MRI my neurologist's MA sent me to get in an attempt to decode my balance and gait issues. That led to my being referred to the neurosurgeon who further diagnosed my cervical malformity, offered surgery, but at the same time called my condition "borderline" and, as I had no cervical symptoms (at least none of the typical symptoms that might cry for urgent cervical surgery), we take a wait-and-see approach. I got that diagnosis a little under two years ago, and I've still no pain that I (as a person who has no pretensions of being a doctor) think of as stenosis-related pain; no dizziness or vertigo-like symptoms, either. An EMG a year ago pinpointed (bad pun!) sensation-loss in my feet. Even that sensation loss – if it hadn't been for the EMG – is yet another condition of which I might not be aware if it hadn't been for the EMG. I tell my clinicians: "It's a weirdness. I've no pain, but my balance is poor, my walking is wonky, and I don't know why." I should add that I've not been injured. One curious note: a brain MRI, which was otherwise A-Okay, did reveal my having been a heavy drinker, although my drinking days ended more than 30 years ago and I've had nothing alcoholic since. You ask toward the end of your wonderful message, regarding the wait-and-see approach, "Will the neuropathy obscure worsening of the symptoms that are coming from the spine?" That is a question weighing heavily on my mind. Should I get a fresh cervical MRI and return to meet with the neurosurgeon? I trust he'll not pressure me into surgery. He'll expect me to consider seriously what he has to tell me, but he'll also expect me to make that surgery decision. That the decision is ultimately mine? Therein lies the crux of my conundrum.
Again, Jennifer, thank you a millionfold for your thought-provoking reply!
Ray (@ray666)