Nerve Biopsy - how bad can it be?

I still haven't had my peripheral neuropathy cause diagnosed. Its confirmed by emg and nvc tests but bloods all ok except P-ANCA positive (no mpo or pr3).

My neurologist has asked the royal free to do a sural nerve biopsy but I am worried about this. I am not in pain at the moment, just numbness in legs and hands, so I'm not sure that doing something that will make my foot 'dead' to touch and may cause pain for the rest of my days is a good idea.

How bad could it be? and what are the chances of pain? anyone had one?

What do you think..... please let me know if it went ok ... or not!



12 Replies

  • Hi Keith,

    I have never had a sural nerve biopsy so can't comment on the experience or after effects.

    The most important question to ask is will it change your medical management? What are they looking for as they already know you have peripheral neuropathy. If the procedure is diagnostic and will lead to treatment then it's probably worth getting it done.

    The problem with peripheral neuropathy is that the nerves take a long time to repair themselves, if there is an active disease process ongoing then you may need timely treatment to stop it in its tracks.

    Are you seeing a Consultant with experience of diagnosing Vasculitis? There is a very good neurologist at the Royal Free called Dr Desmond Kidd who has a specialism in auto immune diseases that affect the nervous system, it might be worth asking for a referral.

  • Many thanks. I have seen a number of Rheumatologists and all seem to think vasculitis is unlikely. I saw Dr Persey at the Royal Free, and he was fairly certain it wasnt vasculitis.

    However, the cause of my PN has still not been diagnosed and it is getting worse.

    My main worry is that I'll have the biopsy and it still wont provide a diagnosis, but will give me ongoing pain. It seems a gamble I may have to take, I'm just not sure what the odds are!

  • Have you been checked out for Sjorgens syndrome? It usually presents secondary to another auto immune disease but can be a primary condition, although it's rare. It can cause peripheral neuropathy. Do you have any other symptoms?

  • There is quite a lot on the internet regarding primary Sjorgens syndrome and peripheral neuropathy. This is a good article although quite technical

    It mentions that peripheral neuropathy can occur before the usual dry eyes and mouth. I am not saying that's what your diagnosis is but its worth asking if they have ruled it out.

  • Other symptoms are - feeling exhausted after slight exertion, bad taste in my mouth in the morning with bad breath (been to dentist and he cant see a problem). Aches in my chest beneath my ribs.

    I'll mention Sjorgens to my Neuro on Monday and see what he thinks.

    I'll read the link you sent in the morning as Im quite tired at the mo! however as I have distal sensorimotor polyneuropathy so it may well be relevant!

    Many thanks

  • I had this done at Charing Cross Hospital in May last year. It was the only way for the consultant to confirm after all the tests I had had pointed to vasculitis. Other surgeons wanted to operate on my hand which was affected more but she ,as a neurologist, refused this and shopped around until she found someone to do the sural nerve. A year later, I have almost full feeling back in my foot - evidently other smaller nerves link up over time. There has been no problem at all with walking etc. Don't worry honestly.

  • many thanks linjoyfrench

    I'm still worried after reading all the reports on the internet, but I think I have no option really if I want to get a diagnosis. I'm seeing my Neuro on Monday so I'll talk it through with him. They must have done a few and can perhaps tell me the odds of pain etc afterwards (or during !!!) Was it an overnight stay in hospital, or a pop in, chop it out, go home after a couple of hours?

  • The op was very quick and was under local anaesthetic. I was the last one on the list so that other surgeons could watch. There was no pain involved in the op and I went home three hours after. I had to sit with foot elevated for couple of weeks for skin to heal. That was probably the worst part! There was no pain - when you think of it , with the nerve out, there wouldn't be. It was strange at first with half the foot being numb and I had to be careful I didn't tread on anything as I wouldn't have felt it! I have had no problems with the foot in the last year and it definitely made no difference to walking or going to the gym. Now sensation is almost back to normal .

  • I have had MPA for about six years.For most of that time I have been under the Care of the vasculitis clinic at the Royal Free headed up by Prof ALan Salama.

    I also have extreme PN in both my feet.I can walk pretty well now but for nearly a year at the beginning I could hardly walk unaided.I still have extreme nerve pain.This PN developed almost immediately after a relapse early on that required a combination whack of steroids and cyclo.I think the PN was caused by a combinations of Chemo damage and vasculitis.Nerve and muscle damage tto the feet is a common symptom of Vasculitis.

    I also had PN in my hands but it eventually went away but stayed in my feet.

    It is pretty painful even now.I liken it to having your feet clamped in a vice,hit with rubber mallets then plugged in to an electrical socket whilst someone sticks needles in them.I found drugs useless but self hypnosis and relaxation techniques makes it better.

    Hope this is useful

  • Blimey that doesn't sound too good. I suspect your problems are at the extreme end.

    I've just seen my neurologist and he says 'up to you really' 5% chance of long term pain. Do lumbar punture at same time to look for inflamation. Could do lumbar puncture without biopsy if you want.....

    So.. I've got a couple of weeks to think about it.

  • Booked in for 29th November. I could still wimp out I suppose, but want to get to the bottom of it so think its a chance I'll have to take. Wish I wasnt so worried about it...

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