Question about nerve biopsy
AnonymousAugust 9, 2007 at 3:17 pm
Hi everyone–hope the weather is not too hard on everyone. I am now on my fourth Neurologist since dx in May 06. Some real BAD stories…anyway after the emg nerve conduction and MRI, she still wants more info. So I am being scheduled for a nerve biopsy on my lower leg. Please give me anything (good or bad) about this procedure. She knows it is CIDP, but cant figure out why my lower legs are still so useless and foot drop in both feet. I can wiggle toes, but the two big toes wont budge. I take Lyrica 200mg 2 a day and Cymbalta 60mg 2 a day, and still pain and weakness. Paitence not being one of my virtues, I am really getting tired of all this. I use my power chair all the time. Stay cool!! Regina
AnonymousAugust 9, 2007 at 3:39 pm
I have never done the nerve biopsy because my first neuro, the best one,
said that we know you have CIDP, so to go through that surgery, is not
needed. He said it leaves ugly scars on the calves of your legs. I saw a
patient that had it done and still today, her calfs hurt her from having it
By doing the biopsy, they want to see if you have any tumor-like lesions
between the nerve. If you look up nerve biopsy, there are threads that
show you what they are looking for. At this time, there isn’t anything to be
done about it. They just verify that you have blockage. Yet, you are left
with some ugly looking scars.
It is up to you…but nothing will come of it, other than knowing 100% you
have the blockage, that they already suspect. I don’t want to sound all
that negative, but there is nothing further to do, once they do the sural
Good luck, though…
AnonymousAugust 9, 2007 at 7:22 pm
from those that have posted in the past years the possible info gained [usually not much] is not worth the pain & permanent loss of feeling that results. i strongly recommend against it. she can do nothing to help you improve. if she has Dxed you as cidp, as you say, there is no need for any more tests. neurontin for pain. scheduled ivig to combat the cidp. rest when fatigued. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 10, 2007 at 12:56 am
I began this post twice now and back-pedalled. Although quite possibly irrelevant here, I had a nerve/dura biopsy due to a failed tap. SS had balked until the results were reported. I really didn’t want the procedure performed but if were to lead to something positive, (although it didn’t) other than prompting SS to hand over my due, it was probably a necessary evil in my particular case.
AnonymousAugust 10, 2007 at 6:29 am
I had a nerve biospsy. The procedure itself wasn’t as bad as the lumbar puncture, imo. I have a scar on my calve, as mentioned, but no lingering pain. The risk of having the nerve form a painful tangle after the procedure is very very low, but it is a risk. You need to weigh it against the possible gains. I had it done because it helped my neuro determine the extent of two separate neuro conditions.
AnonymousAugust 11, 2007 at 11:32 am
Thanks all for the help. I dont want to do this very badly. The Dr.’s explanation was to see if the nerves are badly damaged and perhaps do more meds other than ivig. She is going to start me all over again with the 5 treatments, then once a month. I was every2 or 3 months. It has been a real bad year with all the quacky doctors. I have to meet with the Neurosurgeon on Weds. and I will express my doubts on this procedure.
Thanks so much for your advise and experience. Regina
AnonymousAugust 11, 2007 at 12:37 pm
I had the nerve biopsy done. Like you I wanted to do whatever I could to get the most information to help me. It has left an ugly scar and no feeling on my left outside of my foot. I got an infection and it took nearly 7 months for it to heal! What did we find out?…that I have had CIDP longer than we thought as the nerve showed both breakdown and repair of the myelin sheath! I would NOT do it again not worth the risks and the pain! It hasn’t helped in any of my treatment or healing!
AnonymousAugust 11, 2007 at 7:44 pm
My husband had a nerve biopsy in June, he has a not-so-bad scar but the docs were looking for inflammation and didn’t find any. His myelin is deteriorating but his nerve fibers seem healthy. Problem is they didn’t get a diagnosis (other than CIPD), he has the scar and the pain is so bad that he needs a pain patch to sleep at night. He does regret having it done.:(
AnonymousAugust 11, 2007 at 11:11 pm
the surgeon will want to do it cuz he gets no $ if you elect not to go through w it & he will prolly talk you into it. he does not have your concerns at heart. my wife works in a hosp, nuff said. i don’t see how a biopsy will show if you need more meds. if the ivig works, that enough. the usual timing is every 6 weeks, but that can vary greatly. it is done by experiment. if periodic ivig doesn’t make you feel better, then other meds are introduced. there is no need for a biopsy, but, naturally the call is yours. pls forgive me for saying this, but you live in an area that requires you to go the mayo in rochester for quality Dx & Rx. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 12, 2007 at 12:49 am
I had my nerve biopsy June 9 2005 and I am still in pain. It showed that the nerve was not damaged but my ankle still hurts. Not worth it especially if you know you have CIDP. My spinal tap and nerve biopsy were normal but the nerve test and slower conducting muscle showed CIDP.
AnonymousAugust 14, 2007 at 10:45 am
Sural nerve biopsy is done to see that pathology of the disease on a microscopic level. It can show things like axonal damage, vascular involvement, inflammation, demyelination, etc. My neuro insisted on it before started me on IVIG — perhaps she needed hard core proof for the insurance company to OK it. One neuropathologist that I know said the insurers are requiring evidence because of neurologists tendency to “throw IVIG” at anything they can’t figure out.
I had the biopsy in May 2006. I still have some numbness on the side of the foot, sensitivity at the biopsy site, and occasional “zinging” short sharp pains in my ankle. However, given the miraculous improvement gained from getting IVIG, it was/is worth it.
PS. I don’t think the surgeons are in this for the money. Mine clearly didn’t relish doing this procedure although he is known as being good at it. He started my consult by saying that he was just the technician, and he was honest that feeling may never completely return on the side of the biopsied foot. Be sure you’re getting a surgeon with a reputation for getting a good, proper sample — you don’t want to have to do this twice if the pathologists can’t run the appropriate tests — and also that the biopsy is examined at a medical hospital known for neuropathology, not just any community hospital.
AnonymousAugust 14, 2007 at 10:56 am
I haven’t heard much, if any, positives for doing this surgical procedure. Sure, it tells “them” about the nerve they destroyed for the study but it doesn’t tell them about the rest of the nerves. Each one could be just a little different. Perhaps the ankle nerve wasn’t really affected but breathing hurts sometimes because the diaphragm is messed up. The ankle nerve isn’t going to tell you why your hearing comes and goes . . .
That’s my take on it.
AnonymousAugust 14, 2007 at 11:08 am
you mentioned “he was honest that feeling may never completely return on the side of the biopsied foot”. i think he should have said it will never return. once the nerve is removed, it is gone. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 14, 2007 at 12:47 pm
Again I thank everyone for the infor. I go for a consult with neurosurgeon tomorrow. I will have alot of input from you all. I have no feeling in my legs ankles or feet. I think after a year and 4 months they want to find out why. I waited 6 months before seeing a Doc, so perhaps I have more damage than average. I loved my original Neuro., but he left the area.
Gene, I thought seriously about Mayo, but someone here had very bad luck there. I should have tired Minn. and Dr. Parry. I am 68, dont feel very well and dont look forward to long trips. Cant leave my Pug and Wheaten Terrior (just joking re dogs). Will let you know what happens tomorrow. Thanks
AnonymousAugust 14, 2007 at 2:18 pm
No joke about the dogs–mine go absolutely round the bend if I’m five minutes late coming home from work. I spent a night in hospital and upon my return you’d have thought I’d been gone a year. Kind of nice to know you’re missed.
My neuro has decided that I need a nerve biopsy to determine exactly what’s going on. I was diagnosed with CIDP six years ago (after two years of symptoms) but my neuro and I are both sure something else has been going on the past three years. So the biopsy should at least give an indication of what the CIDP is doing.
One of the possibilities of what’s happening is neurosarcoidosis. Considering the definitive diagnosis would depend upon a biopsy of the lesions I have in my brain, I think I’ll stick with the the biopsy of the nerve in my lower leg. Considering I can’t feel anything there anyway, they could probably do the surgery without anesthesia. 😀
AnonymousAugust 15, 2007 at 9:13 pm
Well, I gave in. I asked all the questions I had from info on here and he convinced me they could get results about my nerve damage and then my Neuro can give me the proper meds. Besides the Neurosurg. was cute (just kidding, dear Hubby is always along to supervise me). So I go next Tues to have my left leg sliced. I am scheduled for 8 am, so I will still be half asleep as it is over a hours drive there**yawn**. Thanks again for the help, and wish me well, as I hope everyone is well and we will all keep fighting!!
AnonymousAugust 16, 2007 at 1:10 pm
I know what you mean about giving in, I felt the same way. But if the procedure results in you getting the treatment you need to improve, like happened for me, it’s worth it (IMHO). I had both local anestesia and was twillighted for the procedure — didn’t feel or remember a thing. Did start to feel the nerve when the local started wearing off — got on Vicodin right away — may not completely eliminate the pain but makes you care a whole lot less 😉 !
My thoughts are with you and I hope everything goes well!
PS. I have recovered some of the feeling in my foot that was originally lost — the nerves “reroute” sometimes. But the ankle area is still numb. I made the comment about appreciating the surgeon’s honesty because my neuro said the feeling would return, might just take a few months. 😡
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