I don’t know your complete situation? BUT???

November 16, 2010 at 8:40 pm

I’d try to get second, third and fourth opinions before I did something so drastic. [I know I have done so!] Yes, it could relieve your pain? BUT, IT could leave you far less mobile. I am assuming that mobility IS what you want to preserve to most degrees.
As one who has seen over 9 neuros in my ‘diagnostic’ processes [and sub sequent treatments]… I agree with those who’ve met my best research estimations for WHAT I’ve been thru. Interestingly enough, some of these neuro’s I’d encountered I suspect, re-thought what they’d always thought about CIDP after they met ME!
If I were in your shoes [if you can wear them?], I would truly get other opinons as to how and where to go and what to do…
I have to admit, that I was truly lucky from the time I’d changed from my very first neuro to the SECOND! Then? I got diagnosed and treated fairly well.
Follow your instincts on this, as to what seems ‘right or wrong’. That is crucial as to how well you get diagnosed and then treated!
Leaving one doc for another? Key words are: ‘We don’t communicate well’. Say no more no less till loong afterwards.
Me? I’d avoid surgery like a plague? But then, I’ve had 4 biopsies and two major surgeries [for other things] since my diagnosis. Yet? I’d still stall at any ‘biopsies’ or surgeries IF I can help it in other ways.
Trickier aspect if finding out what all you have that may really need surgery and what might respond to other treatments.
My heart goes out to you truly, and I understand your delemma. So, go get other opinions that can ease your mind that THIS DOC and THIS surgery are the right things to do NOW!
I’m almost crying, because I respect that you are hurting. Please let us know what you do and also why. HUGS and HOPE!