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Posted in: Back pain, Chronic pain, and Neck pain.

Mid-Spine & Neck Pain - No Answers from Mayo Clinic

Started by ShanlynnR on 10/28/2020 4:46pm

I've had no luck with Mayo Clinic and they've basically told me just to "figure out how to live with the pain" - so I'm desperate to see if anyone else has heard of this:
Five months ago: Started with burning in my feet, quickly spread to my arms, then torso, then added shooting pains (random), The shooting pains calmed down after a couple weeks but weakness in my arms and legs (sometimes severe) set in. Starts as soon as I get up in the morning and gets worse as the day goes on. MRI showed a small brain lesion, but spinal tap says no MS or any other issues.
Spinal pain between my shoulder blades started about a month after all these first symptoms; along with weird 'seizure' like activity. My face and/or scalp would freeze up for 20-30 seconds each time, it would be very tingly as well, then after the episode was over, my arms and legs would be very weak and tingly. These got more and more frequent; but EEG said they were not 'seizures'.
Spinal pain is now so bad that I cannot work. Feels like a big hot straw between my shoulder blades is radiating pain up into my neck and into my shoulders, down my arms and into the base of my skull. I get shooting pains as well into my arms and into my chest. The pain level is lowest in the morning (around a '3') but the more I move my spine during the day, the more the pain level increases. By afternoon/evening, I'm up to a 6 or higher almost every day now. Nothing helps the pain. I'm on Gabapentin for terrible parasthesia that I've had for months as well, but it doesn't help this pain in my spine. I also feel like I have a fever in my neck all the time (after 2 spinal taps, I do not have meningitis or anything close to that).
I can't sleep at night due to the pain in my spine & neck and the constant parasthesia all over my body. I've had multiple MRI's & MRA's, multiple spinal taps, blood tests, etc. One MRI showed a possible "Dural AV Fistula" but the follow-up MRA showed that it must have been an "artifact" and they sent me back to the drawing board. I am desperate to find out what could be causing this pain!
Has anyone ever heard of anything like this before? Any ideas at all? I just don't understand how something like this is such a mystery to the so-called professionals at Mayo Clinic. There has to be some way to figure it out.

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ShanlynnR So sorry to hear of all the trouble your having ............Please look at ADR support.com. The moderator Harrison is very helpful and knowledgeable in regards to spine surgery. As you stated "and they sent me back to the drawing board. I am desperate to find out what could be causing this pain!" = pathetic which is my and many others opinion of US spine doctors. It's obvious they have no answers for you and will continue doing surgeries on you ! You need to consult with some Euro spine doctors they are 15 years ahead of US doctors and I believe more ethical . Two of the best are Dr Bertagnoli and Dr Clavel , they are known to do revisions on botched US surgeries. They do evaluation via online check them out ! GOOD LUCK !

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