Nerve biopsy
 

I brought this up before and got fairly negative response. Since then I was sent to Strong memorial in Rochester NY. to consult with a specialist. I told him I already decided against the biopsy but he was pretty convincing and now I have to decide.
He said he was the only nerve specialist in the region and he was very confident. He wants to take out almost an inch of nerve off the side of my foot.(said it was an insignificant spot) he said looking at this under a microscope is the only way to get a true diagnosis that could lead to treatment. He even went as far as to offer me a repair of the nerve he would remove. By connecting the nerve ends with some kind of shunt. he told me he does not usually offer this, and it works 60% of the time. He is a surgeon who does over 100 nerve repairs and transplants a year. So I sit here thinking, without intervention where will I be in 5 years. The thought of sacrificing a small section on nerve to possibly stop the progression of this is appealing. I asked him if he had any suspicions of what I may have and he said "Yes, but I'm not going to tell you". I feel I made a bad decision to have the nerve block last year, but I kind of feel that after all the doctors who have guessed, this is more specifically targeting PN. (any experience with this)

I've never had a biopsy, so I really cannot advise you.

Some others may come on here. I believe however that all
it will show is that you have axonal damage. This is not really
going to say WHAT is damaging you however.

I'd Google some more. It had been my impression that this sural
biopsy is not done much anymore.

Maybe Glenn will come on with more information. He has had
the skin punch biopsies more than once.

have you been thoroughly tested already? spinal tap? blood tests? skin punch biopsy? emg/ncs? a nerve biopsy is a last resort. very few people who have posted here or that i have talked to in real life have had a nerve biopsy and i can only remember one who had one who said it aided in diagnosis. the fact that the doctor wont tell you what he suspects or is looking for in the nerve biopsy is a red flag as far as im concerned. there are neurologists who specialize in surgery such as nerve biopsies and this is what a number of them push for early in the diagnosis stage.
I was diagnosed with sensory motor axonal PN via emg/ncs and was referred to Columbia Presbyterian Neurology for a further workup. The first thing they wanted to do was a nerve biopsy. Thankfully i found the PN support site that was where the long term posters to this site were prior to going for the biopsy and as a result was tested correctly without the permanent damage which would have been done by a nerve biopsy.

If it were me i would do my research on nerve biopsies and if the doctor still refuses to tell you what he is looking for or suspects I would move on.

Thanks, echoes...

Here is book link...

http://books.google.com/books?id=56q...ed=0CGMQ6AEwCA

Sounds like a money maker to me!

Ask your doctor these questions:

How many of these have you done?

What will it show, and how will you then treat the results?

Did you do a nerve conduction on this nerve already? Was it normal?

I have had the sural nerve biopsy...back in '97. It is NOT done often anymore according my neuro at Hopkins.

I can only relay my experiences and what you may encounter might be different. The procedure of course completely severs the nerve so anything below the area will be numb...guaranteed. I did not have the option for any re-attachment with shunt, so don't know the outcome of that. I also experience significant phantom pain that can (and was) disabling. This lasted for almost a year but did lessen slowly over this time period. To this day I have no feeling from the back of my calf down & around the outside of my foot. Have I gotten used to it? Yes, but it took a while.

I did not have the punch biopsy before the nerve biopsy, and frankly don't think it was widely used at this time ('97). I have since had the punch biopsy twice and suggest you at least ask your doctor WHY he's not considering this first since it's less invasive and provides sufficient information for diagnosis of SFN.

The sural nerve biopsy may provide similar results that a punch biopsy would but neither will tell you what is causing it. I also don't know if the nerve biopsy can actually confirm SFN because they are not looking at the small fibers. Mine (nerve biopsy) showed axonal degeneration, but like MrsD said, it doesn't show why and from what.

Did you ask him about the punch biopsy? What was his reply? Do you have positive EMG or NCS that would indicate large fiber neuropathy?

The nerve biopsy--
 

--as the others here have said, is really only now for very special diagnostic suspicions and indications.

Because of those indications it should also involve a biopsy of muscle tissue as well.

In general, at the very least, it will leave some areas of patchy numbness. That may be worth tolerating if you get a definitive diagnosis and a treatment plan. But, some have reported the standard post-operative complications of surgery (infection, etc.) and the fact that the doctor has a suspicion but doesn't want to tell you is rather disquieting.

Take a look at this--it's a very comprehensive look at how/why a nerve/muscle biopsy might be performed:

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

A lot of the more common diagnoses, though, might be made with other testing. In my estimation, only a few of the diagnoses listed, mostly very rare ones, quite a number of them hereditary, would require a nerve/muscle biopsy for confirmation. So it would be good if that doctor told you what was being looked for.

Thanks
 

for all the responce. Origonally 3+ years ago I had alot of testing that showed nothing. I am hoping that my neurologist will let it slip what they are looking for. An EMT friend told me that he suspects the doctor did not want to throw out assumptions. I don't know. As far as infection. The surgeon said he only does this at Strong memorial in the OR in the most sterel conditions.

Also this has never been suggested before. They may be thinking last resort.

I will do more research on the doctor. everyone so far say's he is very good. Thanks again.

Wow, I read this and there are so many possibliities.

Nerve biopsies
 

Why don't you ask the doctor what he suspects? I sure would want to know. It doesn't mean you have any of it but I would want to know what his thinking is.

Everything was so fast and I was not prepared to ask questions, but he could be suspecting something terrible or dramatic and didn't want to make assumptions. All my doctors know I do a lot of research online so maybe my neuro told him to watch what he say's. In the begining when my neuro sent me for further testing at an oncology center he very reluctantly told me what he was seeing. (Protien that can indicate myoloma) I made him write it down and he was uncomfortable. (So far that has been stable).

I'm having a flair up right now where my feet feel like they are asleep. There is a definite progression going on. I feel it in my ankles and left calve. I feel I have to know why so I'm leaning toward the biopsy with the repair option. Still open to thoughts. I've searched the boards and there are mixed opinions.......................................... ...

I have had the nerve biopsy you speak of & wouldn't recommend it.
In my case it proved nothing.
It was several years ago but I remember like it was yesterday.
The spinal tap was a pin prick compared to it.
My foot was totally numb from local.
I was laying there with my eyes shut trying to think of something else.
I felt the tug as the surgeon made the incision but couldn't feel him probing round inside.
But when he cut through the nerve I felt a severe electric shock & saw flashes of light.
I also imagined a sound like a high tensile fence wire being cut.

I decided not to...
 

push for this. The neuro specialist at the University that I saw said they rarely have a need for this anymore. The EMG/NCS testing, at least at teaching hospitals with practitioners who know what they are doing, are very diagnostic in terms of nerve damage and type (axonal or demylinating or both.) This is for long nerve fiber damage. Small nerve fiber damage usually can be seen from a skin punch biopsy. What neither one tells you is why the damage is occuring, in many cases. I think that is why people want the biopsy, but I have heard too many times that it is inconclusive. And the numbness it leaves behind, or sometimes pain, may not go away.

I am going to add this story to this thread, because it illustrates a mindset doctors tend to have.

They really like to cut people up and have done so for many decades.

I just ordered this book: Drawing Blood
from http://www.amazon.com/Drawing-Blood-...d+keith+wailoo

I got my copy from ebay for much less $$ 1.99.

I thought it would be useful for the rebel in me! If you read that blurb on Amazon, it discusses the POLITICAL aspect to medicine, and how people get "diagnosed" according to the beliefs of the doctor.

Today there are similar things going on in medicine. One just has to know where to look to find them. Ignoring B12 status is one biggy we all see on this forum.

I just met with my GP this morning for routine bloodwork results. I told him about the biopsy and he thinks I should hold off for now. He finally talked me into trying gabapentin at the lowest dose and even though my neurologist says I have to take it consistently, My GP said everyone is different and I can experiment with taking it for just flair ups.

He also suggested that even though my neuro is supposed to be good that I should get a second opinion from another one.

I have read a lot on the threads here going back to 2006 about biopsy's. The one positive I saw was that if you do it , have it done by a skilled surgeon. The neuro surgeon I saw does brain and spinal surgery on a regular basis. So that's why to him a nerve biopsy is routine small stuff. however to me it's big and I won't rush into it.

I also saw that someone here had a trial IVIG treatment that was helpful. I may push for that first. Thanks again everyone.