Do a search here...there has been a lot of discussion of sural nerve biopsies and not too much of it is good. When they suggested in the beginning that i go for a sural nerve biopsy, i read about it and went to a new neurologist. I would have a lot of questions for that doctor as to why . Im sure you will. Good luck.

Don't you worry about me asking questions. From what I understood from Dr. Goldfarb's face when I discussed nerve biopsy, I don't thing she would suggest this as an "easy fix", or something to that effect.

She's much to thorough. Anyway, we're a long way from there.

From what I've read, we have to give the ivig a few months to see any improvement, and Alan knows this, thank god for that.

I often wonder why, man years ago, they didn't suggest a nerve biopsy when Alan first got the neuropathy and it progressively got worse.

His first neurologist Dr. Clark, all those years ago in Coney Island Hospital did say "the only way to find out more about your neuropathy is a sural nerve biopsy" but then he stopped talking about it.

Very confusing!!!

Melody

--usually, a sural nerve biopsy is suggested in "idipathic" neuropathy cases if a neurologist feels there is the possibility the neuropathy is caused by some sort of autoimmune and/or vasculitic disease. They take a little piece of the sural nerve and then examine it under powerful microscopes to see the condition of the myelin and the axonal fibers--there are some telltale signs in certain conditions, such as amyloid (which I severely DOUBT Alan has), or in certain vasculitic autoimmune conditions such as polyarteritis nodosa, Churg-Strauss, and others, that can be detected this way.

Unfotunately, in at least half the cases, even the nerve biopsy doesn't definitively establish a diagnosis. Even a CIDP suspicion may not be confirmed in such a procedure, as the damage caused may be patchy and incomplete. (What they look for when CIDP is suspected is the pattern of nerve damage/repair/pattern/repair that CIDP tends to cause in its relapsing/remitting progression.)

The bigger problem with sural nerve biopsies is the skill of the surgeon doing it. It is not MAJOR surgery in the sense of a bypass, but it still creates a wound that may be vulnerable to infection and the like. And a lot of people that have had it report a permanent numb area of varying sizes near the ankle afterwards.

As you've mentioned, such a biopsy is something that's still down the road; let's see how the IVIg works first.

Take a look at this:

http://www.neuro.wustl.edu/neuromuscular/nother/bx.html

--and click around a little to read about the types of findings associated with different conditions.

This site: http://jnnp.bmj.com/cgi/content/full/64/1/84

I would be paying special attention to:

THE CONCLUSION IN THE ABSTRACT and, under METHODS the 'clinical features of patients w/CIDP. [IVIG IS used 'off-label for CIDP, but it is accepted practice]. Look at the #'s and percentages[confirming diagnosis in 40-60% patients]. This is an older article [10years] but an important article in that it states that other clinical features, such as response to IVIG are as effective as a seural biopsy.

Most insurance companies today do not require biopsies for IVIG 'off-label' use in treating CIDP. Criteria rely more on chomprehensive blood and spinal fluid analysis and nerve conduction tests. I believe I'd PM'ed you some info on your insurances plan and it's standards for IVIG...re-read it. Very carefully. I believe, I recall that they don't recommend seural biopsies as a rule, providing other diagnostic conditions were indicative of CIDP/autoimmune.

Further, how the sample is treated, prepared and assessed is a key to accurate diagnosis and the need for a biopsy!

There are two sides to biopsies, seural [I've read mostly negative comments on the procedure - ask kmeb] and punch biopsies [positive re s/e's but only confirms SMALL FIBER PNs - ask Bob B]. Biopsies do NOTHING regarding treatments, or treatment options, they only reinforce diagnosis. From my viewpoint, a seural biopsy was 'presented' to me as a diagnostic necessity, I DECLINED, but I'd met, essentially 9 of the 10 requirements for positive CIDP/acute progressive PN diagnosis.

ALAN will need to be VERY CLEAR reading on his own what the pros and cons are regarding such a REALLY INVASIVE procedure, should the biopsy be a seural one. Especially if other test results indicate actual or borderline CIDP.

Think long and hard about this, please! - j

Dahlek:

You said: "ALAN will need to be VERY CLEAR reading on his own what the pros and cons are regarding such a REALLY INVASIVE procedure, should the biopsy be a seural one. Especially if other test results indicate actual or borderline CIDP.

Think long and hard about this, please! "


Believe me, I'M NOT THE ONE WHO HAS TO DO THE THINKING!!! Alan already knows how I feel about these biopsies. I heard such terrible things.

But the thing that confuses me is the need or a biopsy versus the going on IVIG. Isn't it simpler (before they put you on IVIG, to say, Let's give you a nerve biopsy, it's an in and out thing, then we'll biopsy it, let you know AND THEN YOU WILL PROBABLY KNOW EXACTLY WHAT YOU HAVE"

Maybe I'm mistaken, but tht sure beats a 5 day stay in a hospital away from your wife, doesn't it??

The way the doctor put it, it's no big deal, (Dr.Goldfarb says this guy is the best in town) and Alan says he was just like Dr. fred). So if Alan (who used to be a private detective), is comfortable with someone, believe me, I'll be comfortable with this man.

But the doctor definitely told Alan, "if you are in the 70 our of the 100 that I can help, we can fix this." This is what confuses me. How can they fix it when (to my knowledge, the only treatment is what Alan is undergoing now).

It's not like "oh, we'll definitely know you have CIDP and there's SOMETHING ELSE WE CAN DO FOR YOU". Is there another treatment besides IVIG?
This is what Alan told me last night and believe me, HE BELIEVES THE FOLLOWING: "Maybe they will see something in the nerve, they'll know what nerve it is, and maybe they can block it and stop the pain". I countered with "Alan, you have PN in both feet (between the toes)." Alan said "So they'll biopsy both feet".


Oh My Lord. That's all I can say.
I'm getting more facts, that I can tell you. And we'll be discussing the whole thing with Dr. Goldfarb (and our lovely Dr. Fred).

this 18 year journey with the PN will either be resolved, relieved or I'll shoot myself.

mel

new autoimmune drug treatment, posted by Billye?

That is all I can think of as "treatment" in addition to IVIG.

I would think the best time to do a biopsy would be BEFORE treatment.
IVIG now could cloud the diagnosis.

You know you have the right to refuse, always.
After a biopsy, there may be PAIN in addition to numbness.

THANK YOU MRS. D!!!!!

Let's hope Alan takes his sweet time before going gung ho with this.
I'll look into what you were indicting about Billy's new autoimmune treatment

My phone rang at 6:56 this morning. I was in a dead sleep. It was Alan with a cheery GOOD MORNING!!! I was in a dead sleep. I said "are you out of your mind, it isn't even 7 a.m. yet. He counters with "but it's 8 a.m.).

NOT IF I DIDN'T CHANGE MY CLOCKS IT'S NOT!!! and even if I did, it's still not 7 a.m.

He said "I knew you'd start yelling at me eventually"

lol
mel

Mel.
I've not had a 'Sural'. (I have had the Skin Punch Biopsy)
I've read about it on these BB's for 8 years.
IMHO, the results (not the Dx, but the after affects) can be worse than the PN and that can not be fixed - ever !
More pain, More suffering!

The consensus is that the test results, more than 50% of the time,
only confirm the previous diagnoses.

I'd get detailed info on that Dr's claim that 70 out of 100 get 'fixed'.
How? Why? Which, when, where, who, .......DUH !!
(For some reason, some surgeons just love to do Sural's.
I think they need the practical experience....or maybe it's a good way to pay the Country Club's annual fees....who knows?
They just gotta do 'em..damn the damage done to the patient)

I would not take the risk unless I'd had a 2nd, & 3rd opinion on it,
from a PN neurologist - specialist. Not just a neurosurgeon.