Gramps

You seem to have gone through a similar experience in terms of a medical screw up. I had a missed diagnosis from an accident, a serious one....you become a medical hot potato when that happens, and no one wants to see you, or they see you and barely examine you.

It has been over 20 years and the practioner I have now, does admit to me that there was likely missed spinal cord damage in addition to the missed SC joint fracture dislocation (usually fatal). Now there is no real recourse for me, as 20 years have gone by and luckily my spinal cord damage has caused me no loss of function except for pain and endurance being upright. I can't tell you what a hey day the insurance companies had with this, other than to say they got off so incredibly easy and my life has been quite difficult. But I could have died 20 years ago in that accident, (not that I don't have my days when I wonder if that would have been more merciful...but, again, I had young kids and it mattered that I be around for them.)

I just would like some relief. I would be, as you advised, extremely cautious in having anything done with my spinal cord or canal right now. Unfortunately, a few years prior to seeing my current and very good neuro, I was given 3 spinal nerve root blocks for T spine herniated discs, which have since calcified, and now due to PN (autonomic) and location of the herniations, are inoperable. If spinal cord damage was known back when I had those injections, I bet they would not have done them. My present neuro says he would not have done them....it is all a big mess. On the other hand the folks that gave me the nerve root blocks ended up referring me and my neuropathy was found.

My PN or small fiber neuropathy is still 'idiopathic', in that no cause for that problem has been discovered, and it does not appear related, or they at this point have no evidence that it relates to my accident. My SFN is body wide, sensory and autonomic. I have a hunch at this point what may be causing it and see the neuro tomorrow to see if he will pursue my hunch.

If my hunch is correct, well, we will see what he can do to relieve my symptoms. It may be that there is no way to relieve my symptoms, which is an awful prospect.

I truly think that we must be very, very, careful that the 'cure' or 'treatment' we pursue is not worse than, or worsens the actual condition itself. Drugs and devices and procedures even if properly done can cause problems for some people. I am trying hard not to dig my own hole any deeper than it is and balancing that with living the best life I can...it 'aint' easy.