Dahlek; I'm from the Chicago area & have been treated(?) by some of the best doctors in their field. However, during a clinical trial in 2004-05, one of them made a huge mistake which almost cost me my life. This mistake & the coverup of it has prevented me from receiving proper care, as well is most likely the cause of my recently dx'd CPS. Even the NIH admits there is no treatment for this condition. However, I have secured an appt at the Mayo Clinic to rule out any treatable causes for this condition.
My recent dealings w/ Mayo & Johns Hopkins, and not CPS, is what brought me to this thread. However, as talk continued, the subject went beyond helping Antonia securing an appt w/ Mayo. Soon talk was about RSD, the SCS & infusion pump. I only brought up CPS again when Kebsa wrongly referred to it as CRPS. This also led to me relating my experience about asking for a double amputation since her doctor had performed an amputation on her. I would have much rather stuck to helping Antonia get help than opening up about a condition I know no one understands since many neuros don't understand it yet. There's alot more to CPS than PN pain as it not only uses the peripheral nerves to inflict pain & other sensations. This is another reason I tried to avoid bringing it up on this forum.
Pain is pain & suffering is suffering so I feel for everyone who is in pain & pray they find relief. If you go back farther than the last post or two, you will see how I tried to avoid all this. I was just attempting to help someone get into a hospital, which is why she started this thread. I pray you have a pain free weekend.
Gramps

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.