Okay, let me catch my breath. I am going around in circles because I've been reading these boards for years and I have read MANY THINGS ABOUT NERVE BIOPSIES!!!

Here's what happened. Alan just phoned me. It seems Dr. Zonenshein, the neurosurgeon just visited Alan in his hospital room. Alan said he was just like Dr. Fred (so he's a good guy). He had Alan's MRI films and he told Alan the following: "Alan, your stenosis is, on a scale of 1 to 10, a 5. I don't think it's causing your neuropathy. I think the ivig might help you.

Get that???? He doesn't think Alan's back is causing his neuropathy!!!!
He doesn't think his spinal stenosis has anything to do with his PN. Alan explained how when I massage his back and his spine and the pain goes away, the doctor replied, 'well, she's massaging muscles and that brings oxygen and circulation into your feet".

The doctor said he thought the ivig might help Alan, BUT......... if it doesn't, "I would recommend you let me do a nerve biopsy. I've done many of them and let's say I did 100, well, I helped 70 people. You might be one of the 70 or you might be one of the 30. You never know."

I went nuts on the phone and I said to Alan: "Are you talking about a sural nerve biopsy???, I've heard serious stuff about this, it's dangerous and the only thing it does is tell you a definite diagnosis, it DOESN'T FIX ANYTHING!!!!

Now I am certain that I have read this on the boards. The only thing getting a sural nerve biopsy is to get a definite diagnosis. Now am I right or am I wrong?

Also, Alan said: "Well, he didn't mention the word Sural He just said nerve biopsy". I said to Alan: "Listen, did he say punch biopsy or sural nerve biopsy"? and Alan said "all he said was nerve biopsy".

And when Alan asked him "Isn't this a risky procedure, won't I be laid up"? the doctor responded "Oh, no, you go in and come out the same day, you'll just be a little numb and your feet are numb anyway aren't they?" He told Alan, he takes a little piece of the nerve from the bottom of the ankle, he sends it for a biopsy and when they get the results, they find out if they can fix it or they can't fix it!!!

So what the heck is going on here? I told Alan, "Listen, you are just beginning this ivig thing, it takes time, you DON'T GO GETTING ANY NERVE BIOPSY, at least don't even consider it now".

Alan said: "Calm down, we are not talking right now, we are talking IF the ivig doesn't work". Way down the road.....I asked him what else did the doctor say and the Alan said: He said: "Alan, if you were not able to walk more than a block, I would say you have serious back problem, but you walk, you go to the gym, YOU DO NOT HAVE A BACK PROBLEM, so I don't recommend any surgery on your back and even if I did operate you can't get an endoscopic dischectomy, I would have to put a rod in your back (with his stenosis). The doctor further said: "So thankfully, we don't have to go that route" This is exactly what the doctor told Alan.

Alan said he was very very nice, answered all his questions (I do wish Alan thought to ask him if he was talking about a sural nerve biopsy). Alan said he has never heard of a sural anything. That's because I'm the one who listens when the doctors are talking.

The other day when Dr. Goldfarb came to visit Alan, I distinctly asked her "Have you ever actually diagnosed anyone with CIDP?" and she responded "Only with a nerve biopsy" and I replied: "You mean a sural nerve biopsy?" and she said "my, you are a smart woman".

So I do know nerve biopsies are serious stuff right?

I need more information on this stuff. Thankfully he's not jumping into this head first. Got to give this ivig thing a chance, right?

jeez!!!!!!!!

okay, just went to the following website, where it explains it:
http://www.healthline.com/adamcontent/nerve-biopsy

Describes the whole thing, and like I said, doesn't say where it fixes anything, it just confirms a diagnosis. Maybe I'm wrong!!

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.

Melody -

No - its not necessary to get sural nerve biopsy unless spcific conditions are suspected - they did mine because I had a super rapid progression of the PN and suspected vascilturs or amyloid- the procedure itself - depending on the doc - shouldnt hurt - but its important to have doc who has experience if you do get it done... they took mine out of the back of my calf - and the severe numbness all down the right side of my leg and foot is severe as a result - you could stick a fork in it and I'd never know - thats not going away (its been 5 years) - also, the incision heals in about a week - a few stiches - no big deal - but I and I know lots of others have had residual shooting pains around the incision that also dont seem to go away.

It did show the doctors at the time that my PN was severe, and exactly the type of nerve damage done - ruled out vasilitus and that amyloid biopsy came up clear - but they are still looking in other organs for it...

My current doc ordered by IVIG based on a combo of the damage he saw on the biopsy and the NCS/EMG's...... I dont think the sural nerve biopsy was the clincher.....

If your insurance is already paying for the IVIG - unless the docs suspect something else really serious - I'd really think about it.... Alan seems to do so well already - why rock the boat?

Agree with others - get lots of opinions as to WHY????????

Best wishes....