Posted 06 May 2011 - 07:41 AM
Posted 06 May 2011 - 01:51 PM
Posted 06 May 2011 - 03:33 PM
Posted 06 May 2011 - 04:59 PM
Posted 07 May 2011 - 12:24 AM
I do know when I first moved here to AZ I went to a pain clinic and this doctor was pretty awful - told me he wouldn't give me medication for my pain - but said I had to go to a chiropracter in his practice, go to PT, go to his dad who is a pain counselor and then allow him to give me epidural shots in my neck for the radiographically evident cervical stenosis.
I was like????? what are you crazy? So I went to his silly chiropracter - whatever she did made me nearly faint as I was walking to the check out area - felt like throwing up too. Had to sit and wait till I could walk again. Long story short I got out from under his care - (my neck was mildly tender upon palpation - I'd get 'neck' headaches but the mri's said mild flattening of the cord from my neck issues)...Found a good office - who also sees a lot of escapees from the other doctors practice & he apologized for the guys bad behavior!
Next I saw a neurosurgeon on the east coast who told me I needed a 3 level neck fusion and he's one of the best NS around per the opinion of alot of 'bigwig' docs. I was like ???? So I asked my team at Mayo - and they said 'no' you certainly do not need any surgery at all. The other surgeon called me like 3 times telling me I'd be a quadraplegic if I didn't do as he asked...so Mayo did a bunch more testing - answer was "no" you don't need surgery.
I recently had 2 steroid shots - one in each hip for ruling out trochanteric bursitis - I used to get cortisone all the time for my knees and it was they'd give me great energy and had me feeling better - that has changed - I felt really kind of awful for a few days afterward...then a week later had some super low blood pressures and tachycardia that necessitated med changes - but now things are back to normal (well normal for me)....
But - the good pain clinic doctor told me that if and when the time ever came that I needed an epidural for excruciating type pain - or if my neck got a lot worse etc....he wouldn't hesitate to help me (with ehlers danlos too) So in that I sensed he had no anxiety whatsoever in dealing with special cases such as dysautonomia etc... I figured I'd make sure I had an IV in - ask for it - so if anything happened they'd have access for meds to turn things around if anything wasn't going well --- but I hadn't heard that you couldn't get epidurals because of dysautonomia - I'll read what the others say with interest though for sure!