It’s a tricky thing to decide

June 16, 2008 at 12:05 pm

because you will have a good bit of nerve removed to determine what YOU already know…that nerves are dead.
IF nerve conduction tests, blood work AND spinal fluid are all positive for a likely CIDP diagnosis…Then maybe hold off? I know I did, because all my tests were clear for the CIDP. In cases where it’s not clear it’s a whole different kettle of fish.
These days some insurance companies won’t cover sural biopsies because they are a-too invasive and prone to infections and b-if not properly done, handled and processed could be a wasted effort.
The skin biopsies are for small-fibre nerve damages only and are less invasive but in many medical and insurance circles are still considered ‘experimental’.
Should all your nerve tests, etc not be clearly indicative of CIDP… then, and only then consider a sural…nerve biopsy. AND only with your insurance company’s blessings and clearances.
The blood and spinal tests serve to show that there is an ‘autoimmune response’ going on. The nerve conduction tests show that there is a malfunction of nerve current going from points A & B to points Y and Z…
If you get a sural biopsy? Those nerves are GONE and unlike other damaged nerves, can’t regrow and work around existing damages.
I refused a sural biopsy for three reasons: First- the neuro who wanted to do it was too blithe and eager to do so…and since I’ve learned that it is a procedure falling out of common practice [he wanted to get ‘one’ on his resume?]; Second – all other tests said it wasn’t necessary and Last – I wanted that one shred of hope that I might regain function…I have to some limited degrees and don’t regret that I’ve not had it done. Should I need to go thru the procedure in the future I might consider it if only to continue IVIG. But for no other reasons.
I hope this helps and doesn’t confuse the issues for you. Hope and hugs!