Nerve Biopsy ??’s

All I know I had a nerve biopsy in June of 2005 and it did not show me that I had CIDP. So it was a mistake to get it done because even today I have lots of pain over it. I have scar tissue tendinitis and I hate feeling this way. It is the worse thing I could have ever got done.

I am sure I am not the only one thinking that way. So think twice or 3 times before you get it done.

Sue

My doctor said that would be the absolute last resort and that he’d send me to the Mayo to have it done b/c he didnt feel comfortable recommending any dr’s in Omaha to do it. Omaha is a huge city with lots of dr’s. I dont ever want to have that done.

Like Sue said…think about it several times. Everyone I’ve heard that’s had it, lives with pain from it.

good luck,
Stacey

I was inpatient at Mayo when I had my sural nerve biopsy done; it was never something I was given a choice about, I was just picked up by the transport team one day & taken down to have it done. It was just one of the many procedures that Mayo did that I question to this day. As far as permanently losing feeling, I have so little below the knees anyways, that I wouldn’t know the difference. But they said they would have to do it to get a dx of CIDP…

For the life of me, I just can’t figure out why the medical community thinks that if you carve out a piece of nerve in one part of the body that means it is like that every where else! Even my PCP agrees with me and said that he would never have it done ~ there are just to many long-term lasting effects ~ like pain!

I had a verve biopsy done at the University of Birmingham in AL in Dec 2005. There really wasn’t much to it except it took the wound a while to heal. They were able to tell from the type of damage done to the nerve that I had CIDP.

The only long term effect is a slight numbness around the site. Come to think of it, that area was already numb to start with.

Ericc

I had a sural nerve biopsy done in 2000. I have suffered no ill effects from the procedure. It healed promptly. The CIDP has caused so much numbness in my feet, I have noticed no difference with my feet.

Yes, they take a small section of nerve and muscle from the lower calf. There is not a hole, or even a dip in the appearance of my leg.

In my case it was necessary for a clear diagnosis. My Spinal Fluid test came out at 56. Upper normal is 45. My symptoms were not severe and concise. The EMG and Nerve Conduction Studies showed abnormality, and that they suspected a demyelinating type of action, but not clearly pointing to one Neuropathy or another. Nothing gave the neurologist a clear picture for an accurate diagnosis. In fact, he was leaning towards Charcot Marie Toothe before the biopsy.

The biopsy showed clearly that there was evidence of demyelination and remyelination, and that there was also evidence of muscular involvement. It gave him the last piece of the puzzlu to put together all of the information IN MY CASE.

I stress IN MY CASE, because everyone is a little different. If my other tests had been more clear, diagnosis could have been easier. If my symptoms were more severe, at that time, diagnosis could have been easier. In my case, it helped the Dr. diagnose me.

If you are diagnosed, and you and your Dr. feel that it is the correct diagnosis, I wonder why Dr. would suggest a nerve biopsy? It won’t fix you, it can more clearly diagnose you. It won’t show how fast you are progressing, just that there is damage. It won’t tell you how to treat the CIDP, just whether there is damage and how severe it is.

As to the paralysis point. The area the nerve serves is small, just the back of the leg and some of the foot. It is sensory, not muscular. It will not effect movement, just a numb spot. I’ve got so much numbness, one more spot didn’t matter.

Good luck with your decision.

Dick S

PS. don’t hold your breath on the “cure for CIDP” just hope for good treatment of the symptoms

PPS. As far as why they use the sural nerve… CIDP most otfen affects you from the furthest point back to the closest point. The feet will be affected first, and the toes the first of the feet. Fingertips, and then hands, working up to the arms. The reason for this is simply that the sensory and muscle nerves that feed those places have the greatest exposure to demyelination. Each sensory point has a straightline transmission to your spinal cord and the brain. Think of it as a road to your office that only you can use. (No traffic !!!) Because the “road” is longer than the one that goes to your knees, there is more exposure to a demyelinating attack. The more attack, the greater liklihood of damage and dysfunction. So they take a nerve down the bottom of the transmission and measure from there. The sural nerve feeds the foot, so there is a liklihood that damage will show up there. The damage from the biopsy will also be small compared to a correct diagnosis.

But…if you already have a correct diagnosis… It would be a harder sell for the Dr. to convince me. But remember, each case is its own.

Hi, Eric.

Like Dick, I’m so numb from the knees down that the biopsy didn’t make a difference in what I can feel, and hasn’t made an change in how the foot works (or doesn’t work). The doctor took mine from the ankle, and it’s proven to be rather interesting–it indicates that I have not only CIDP but also vasculitis, although the blood tests for vasculitis are negative. It’s sent my neuro and me back to the drawing board.

Best wishes in the battle,

Deb
London

Dear Dick –

I was trying to not say anything but I feel that I need to because I have trouble holding my tongue.

Just because you don’t want to hold your breath for a cure for CIDP doesn’t mean that others can’t hope. There isn’t anything wrong with holding a bit of hope in your heart. If that hope helps someone get through their day then there isn’t anything wrong with it.

Maybe you don’t want to hope. Maybe you don’t believe there will be a cure one day. Maybe you want to “be real” with people. That’s fine but realize that it doesn’t help people to take away their hope because you don’t have any right now. Maybe one day you will and I’ll pray for that for you.

But sometimes, seriously, hope is what helps us get through the day.

No one here has EVER said to put all of your eggs in one basket because there will be a cure. I, personally, believe that there will be a cure someday but I’m certainly NOT making medical decisions based on that.

There’s nothing wrong with hoping for a cure. There’s nothing wrong with believing that there will be one. But I feel, there’s something wrong with someone who wants to take that hope away from other people. It feels better to be a little optimistic sometimes.

Kelly (is full of hope & faith for someday there will a cure and/or a better treatment for CIDP and all other autoimmune diseases!)

I had the nerve biopsy but i did not have the spinal tap. i had the nerve condictivity study first. It seemed to me that the insurance company basically required the nerve biopsy to support the dx, and for the insurance company to shell out the $$$$$ for the IvIG.

Hi, Kelly.

I’m with you–I’ll hold out hope for a cure until the day I die, and then I’ll still bring the request to the Throne of Grace!

Deb
London

Kelly, and all,

I do hope there will be a cure, I hope that there will be better treatment, and I sincerely hope that more people will find a better treatment regimen for their individual cases.

I also believe that one should mentally prepare for the fact that CIDP will be with them for the forseeable future. It is not a death sentence. Diabetes is not a death sentence, neither is Rheumatiod Arthritis, or many of the other auto-immune diseases. But they don’t go away either. There are many treatments to ease the discomfort, and to correct the symptoms, but the diabetes remains, for example.

Yes, CIDP can be treated. In some people more successfully than in others. Yes, I look for better days. I recently applied for a stem cell transplant clinical study. I filled out a mountain of paperwork to try to get in. I didn’t qualify in the end. But if I didn’t have any hope, I wouldn’t have tried.

As I said to Dawn, as long as there is one T-Cell able to damage myelin, I will have CIDP. Maybe not as severe some times as others, but I will still have it.

I will always try to live a better life, and help people to try to find easier ways to walk, cook, shop, sleep, drive, or do anything to live better.

Hope for a cure, absolutely
Expect a cure, probably not
Live better with CIDP, that’s why I am here. To learn how to better live with it.

Dick,
I sent you a PM. Regarding your comment about the stem cell transplant. There is a lady 40 minutes from me that has had one. I spoke with her, she was very bad off, I do not know the extent of your condition. Try just googling a random sentence such as person in illinois who had stem cell transplant for cidp. Something like that iswhat I typed in and got the info. I have spoken with her and she is doing wonderfully. i will check the history of my e-mails to see if I can find her e-mail.
Dawn

doc worth his oats would advocate a sural biopsy these days? The international association of pain and another association on autoimmune diseases both are reluctant to use it as a diagnostic procedure these days. In fact, many insurance companies [Blue Cross, Aetna and Kaiser] have policies written that indicate that ALL other testing must be done and only if ALL other testing is inconclusive might this biopsy be a valid diagnostic tool – primarily because of possible infection and other nerve complications. And now some key insurers no longer are willing to pay for the procedure without extensive justifications. That is due to the complications and expense of those complications.

I myself, refused the possibility of having it done both 4 and 3 years ago. I had essentially met the equivalent of 9 out of 10 criteria needed. Also, that bit of HOPE so important was that I didn’t want to lose function in a key part of me [ankles] to prove only what other tests have proven…dead nerves. I am glad I refused, as I mite, be getting a little ‘extra’ reflex and feeling there?

Recently I read of a newly developed ‘scan’ procedure at Rochester Inst. of Technology where they to a ‘Cat’ scan or the like which is very refined and they can ‘count’ the nerves and their status. I believe it’s going to go into clinical trials very soon – fast-tracked. It appears that pictures from X date can be compared to some on Y date to see either deterioration [and what kind] or improvements. Since it’s non-invasive, that would be great!
The only other option is ‘punch’ biopsies. These are usually used for small-fiber neuropathies and only a few places in the US are doing them now, and they are considered experimental as of this date. They aren’t truly meant for large fiber nerve issues tho. You can find some of the insurance policy ‘statements’ if you web up ‘CIDP+diagnostic+policies’ You will find various state insurances’ plans policies but for any big companies, they usually are the same give or take.

As for a ‘cure’? I don’t know, I feel extraordinarily grateful that I HAVE been diagnosed, and AM being treated far better than most folks with CIDP! I realize this is a CHRONIC medical condition/disease that can go either way from where I am – which is stable. I would like to think I see some minute improvements? But I am terrified of the progression possibilities. Like all here I make do with what I have the best I can. Dick? I admire you for even TRYING to apply for a clinical trial! That takes a lot of GUTS! The only thing that keeps me from trying is that word ‘placebo’! So, in my book your courage is far, far greater than mine.

So, back to original question – Ericc IF YOU feel that this is what you need to do to get where you think you need to be? Well, go for it. I gather that both you and your docs are a bit more than hesitant tho. Remember that while Ins. Co’s can ASK for a biopsy? Justifications in all other aspects by the docs CAN and does convince the ‘powers that be’ of a more common sense approach to therapies for treatments. Honestly, they just want us all to work for the expense of treatments!

So, keep up your hope and faith that things can work out. If you’ve a good bunch of docs? They’ve got staffers who often do nothing BUT this kind of stuff – getting you approved! Don’t give up!

Ericc,

I had the nerve biopsy done. Yes it is numb, not a big deal as I have lots of numbness in my feet. I had it done to confirm how long I have had CIDP demyalation and remyalation. It also gave more proof for the doctors to have all my medical treatments paid for. I am very fortunate and live in Canada.
All my IVIG is paid for and I have an excellent medical plan and 100% of all my medications are paid for!

Live each day!

Just got back from Disneyland…enjoyed it from the comfort of my wheelchair!
You get to skip the lines on most rides!

Rhonda from Canada

regarding the sural nerve biopsy.

I agree, as a diagnostic tool it is very invasive and carries risk. But, if the diagnosis is unclear, but leaning towards CIDP, I would think insurer’s would opt for this procedure to clarify the situation before paying out $10,000 a pop, or more for IVIG. Just the few rounds of IVIG I had were the equivalent of the price of my house.

If all of the other tests seem to confirm CIDP, a sural nerve biopsy would be over-kill, IN MY OPINION. But if you are not sure….

Take care friends