Nerve biopsy scheduled for 11/24/09

    • Anonymous
      November 19, 2009 at 9:49 pm

      I gave it thought, and basically without it I will not be able to get a diagnosis, since they are unsure with just the EMG/NCV.

      I have already had a spinal.

      .. So next tuesday I am going ahead with the sural nerve biopsy. (that nerve has no functioning anyway)

      I am getting general anesthesia *as I’ve requested it*, instead of local anesthesia.
      So its not going to cause me pain during the procedure anyway.

      Hopefully this will be the last piece of the puzzle they need before I get my diagnosis.
      Then I go back to the neurologist on Dec. 8th.

    • Anonymous
      November 19, 2009 at 10:16 pm

      about cleanliness following up on that procedure. BTW? Gotta ask, IS your insurance company paying for it? Some are not, ergo I ask.
      Call your insurance company tomorrow to BE SURE That it’s be pre-cleared! Sure beats a whopping bill later? Ya know? The neuro should have done this work so call and ask them FIRST, THEN, ALSO ask the insurance company! Never hurts to be over-cautious!?
      Part of me wants to say I hope it’s bad? Another part of me doesn’t…. but I suspect all here feel the same. So.. Good fortune in the whole thing! AND good results that get you the treatments you need!

    • Anonymous
      November 19, 2009 at 11:39 pm

      I was in a similar situation to you, it seems, where my EMG/NCV results were not typical for CIDP and so I had a sural nerve biopsy. For me, the procedure went easily, no problems, and everything healed just fine. You will want to avoid banging anything against your incision site for a couple of months. Naturally, some people can be very worried when faced with this sort of procedure. I’m just writing to offer reassurance by way of my experience and best wishes that it all goes well for you.

    • Anonymous
      November 20, 2009 at 1:15 am

      great. let us know as soon as you here. how long did it take to schedule it and where are you having it done? how long does it take to get the results. I am curious.

    • Anonymous
      November 20, 2009 at 4:06 pm

      The sural nerve biopsy was the final piece of the diagnostic testing for me. My Spinal fluid test was abnormal, but not by much. The EMG and Nerve Conduction tests were abnormal, but not definitive, my other tests showed something, but not clearly. So for me, the biopsy cleared up all the remaining questions.

      It didn’t take long, they cut out a piece of nerve and a section of muscle around the bottom of my calf muscle/top of the achilles tendon area. The incision was four or five inches long. They used dissolving sutures and tape. I had to care for it a couple of days. Two weeks later, I was all better. I had no problems.

      Other people on the forum have had difficulties. I think if your surgeon is good your problems should be minimal. 10 years later, I have found some changes between left and right feet. I had the biopsy on my left foot. The left one is a little worse than the right. The left one fails faster than the right. I limp more from the left then right. But both of my feet are bad, one is just a little worse that the other.

      I would do it again as it provided the clarity for diagnosis.

      Dick S

      PS. Get the results of the biopsy for your files. Also get and keep results from EMG and any other neuropathic tests. If you ever need to file for disability, or to prove your medical condition, these tests are invaluable.

    • Anonymous
      November 21, 2009 at 1:30 am

      Yes, its covered via insurance. I have medicaid, which covers pretty much everything (except “optional” things like plastic surgery), diagnostic procedures are covered.

      It actually took a few weeks to schedule because I was on vacation in GA at the time, and then the nurse was on vacation.
      Once we stopped playing phone tag it was easy enough.
      I’m also a student, so we had to work around my school schedule. I had my pre-op appt. on the 17th (a tues), and I will have my surgery the 24th (the tues following) *tuesdays are my free days*, and the week of thanksgiving I have off.

      Thanks for sharing your experience with the procedure.
      Did they wrap your foot in a dressing of sorts?
      I’m concerned because I have long hours I am in a hospital (student nurse), and I will need to be on my feet, and I’m almost wondering if it would be better for my stability if they casted it?
      (then I could rely on the cast for support though my long shift)
      *If not, I’m bound to be in a fair amt. of pain.

      Thankfully I don’t need to worry about disability or anything, as I already get SSI.
      I can’t qualify for SSDI due to a lack of “work credits”.

      I’ll be sure to let you know as soon as I hear back about the results.
      Hopefully they are “bad” (not really but ya-know) that way I get a darn diagnosis, and can start treatment .. cause I’ve been in limbo long enough! :p

    • Anonymous
      November 21, 2009 at 8:52 am

      The incision will be on the back of your lower leg – above the ankle. My daughter’s incision was about two inches long. They just stitched it and covered it with gauze and tape. She had her stitches removed about one week later. We had a really good surgeon so she did not have too many side effects after the surgery.

    • Anonymous
      November 24, 2009 at 7:23 pm

      I had my surgery this AM.

      The actual procedure its self did not hurt.
      (But I had general anesthesia)

      About an hour after the procedure I began feeling some discomfort at the site.
      I rated my pain at a 1.

      About an hour after that, about a 2-3.

      An hour and a half after that, I don’t know if I moved wrong, but I could not move my leg without being in extreme pain.
      I was worried I had done something to the stitches unknowingly.
      *I’ve left the dressing alone, but I still don’t know*

      I’ve had a total of 2 naproxen (they are a little stronger than Ibuprophen)
      Then that just wouldn’t hack it, but not being able to drive to get anything else had to wait for my S.M. to bring me vicodin (and have since taken 2)

      The pain is at a 1 when I don’t move.
      When I move it wrong it spikes to a 9.

      And I’ve resorted to crawling around my home. 😎
      But, it works.

      Just thought I’d share my experience incase anyone else was thinking of doing it, and wanted an indepth take.

      *keep in mind though, everyone is different*

      I see the neuro on the 8th of Dec. for a consult/follow-up.
      So I’ll know the results then.

    • Anonymous
      November 25, 2009 at 1:24 am

      some tips:

      Make sure you DEMAND that a plastic surgeon sew you up.

      I had my nerve and muscle biopsy done by a neuro. he sewed me up terrible (after saying that I had a lot of adipose tissue on my legs–thanks, dude!), AND he sewed me up with dissolvable sutures, knowing that I was on pred. When I got flesh-eating bacterial infection a few weeks later (noticed by my PT–I could not see the wound on the back of my leg), guy YELLED at me. Apparently, he thought I lived in a plastic bubble, and not New York City.

      Can’t believe he sewed me up with the wrong sutures. Had I known he was a moron I would have told him what to do.

      1. plastic surgeon
      2. regular stitches!
      3. have someone look at the area regularly. which shouldn’t be an issue for you 🙂


    • Anonymous
      November 26, 2009 at 11:06 pm

      I thought I’d give further update on the biopsy, and how thats gone.

      After a while I started feeling great pain. The vicodin didn’t help, so I ended up calling in for different pain medication. They gave me oxycodone.

      So in all that night I had 2 naproxen, 3 vicodin, and 2 oxycodone.
      Then I went to bed.

      Woke up, and had difficulty urinating, so I called, had to go in and be catheterized.
      (just a straight cath, not a foley)

      Went home, back to bed.. and when I’d woke up was very dizzy and nauseated.
      I vomitted 3 seperate occasions. And was not able to eat.
      I was not able to stand either, only cause of the dizziness.

      I called again, only to hear that the pain meds were now too strong for my body to handle, and that I should stick to tylenol. :confused:

      So, I went to bed, and just rode it out.
      When my stomach felt up to it I ate broth, and organic vanilla ice cream.
      Then I went back to bed.

      I pretty much slept (a lot).

      Today I was able to get up and go to my parents home for thanksgiving. But they live down the road.
      My leg hurt a couple times, but mostly it was numb.
      I didn’t take anything for pain, cause I didn’t want to be sick on the holidays.

      I don’t regret getting the procedure done, but man its been a bumpy ride.

    • Anonymous
      November 27, 2009 at 7:39 pm

      Hopefully things will clear up for you soon. I am sorry that your experience was not that good so far. I was wondering how things went for you. I hope this leads to a diagnosis, that will make some of the pains worth it

      Good luck
      Dick S

    • Anonymous
      November 28, 2009 at 12:00 am

      I am curious to know how long that pain lasts. At this point I would give up my siatic nerve for a diagnosis. not really but almost.

    • Anonymous
      November 28, 2009 at 7:04 pm

      Sorry to hear of your difficulties. Here’s hoping that your pain subsides as healing begins, and that this procedure leads to a diagnosis and effective treatment.

      Best wishes,

    • Anonymous
      November 29, 2009 at 8:02 pm

      YOU ARE A FAR BRAVER PERSON THAN I! But luckily my other tests were bad enough so a biopsy wasn’t required by 80% of the neuros I’d seen.
      Isn’t it a cunundrum when BAD news is GOOD? Especially with CIDP?
      I hope you are healing well and that the results bring you the ‘good’ sort of ‘bad’ news you need.
      That all sounds awful? But, you know my intentions are good under the circumstances!