My neuro has decided its time for a nerve & muscle biopsy, hopefully to get ivig approved. The most frustrating issue with all this for me is getting the insurance company on board w treatment. Any who, my question is how many of you have had these procedures, what was it like during&after. Also did the results help your dr get treatment approved for you? I have had many tests ran: positive spinal tap for proteins, left peroneal nerve on emg is shot, qsart test abnormal, etc etc… Insurance is fighting ivig bc the emg is not showing 2 or more distal nerves with significant damage. Although as my dr & myself we’ll know the damage is there, just how long will it take to show on emg. & how much more damage will be done before ivig gets approved. We even did a 5 day run of ivig to see if it worked for me bc nothing else is at this point, well it worked for about 2 weeks. So we know it’s what I need. Sorry for the long post, just had appt today & got refusal from insurance comp AGAIN, so I am frustrated.
I have had a muscle and nerve biopsy, but mine was done after I started IgG. I was foing well & even went into remission for a time then quite suddenly had a very severe relapse. Accordingly, my phydicisn wanted to have the bx done just to make sure something was not being overlooked. I was greatful for the thoroughness & methodology that was being employed to ensure my health & potential to save further nerve/muscle function.
My insurance company never questioned my treatment with IgG due to my positive QSART test, which my physician told me was the “Gold Standard” for diagnosing CIDP. It took my insurance company about a month to get their decision to me. But, as I mentioned I honestly hoped I didn’t have problems getting Approval as I had the Gold Standard test done. Also, I did call my insurance company weekly & had a contact person to check ip on where I was in the Approval/decision making process. I felt if I stayed on top of the insurance company, my file couldn’t be pushed aside or fall through the cracks.
For me, the biopsy was not painful. However I should mention. I’m also allergic to most pain medications so I only take medication if it’s absolutely necessary for me and the pain is unbearable. Send me the pain of the biopsy was more of inconvenience than anything else. My biopsy was on my thigh the incision was about 3 to 4 inches long. I believe I took 2 motrin the day of the surgery after that didn’t need anything else for it. I hope the same is true for you that you have minimal pain as a result of the biopsy.
I’m glad to hear you had positive results with your first round of IgG treatment. Hopefully once you get insurance approval your infusion schedule will get you feeling well quickly.
I hope I’ve answered all of your questions. If I can help you in any further please don’t hesitate to contact me. I do understand your frustration living with this disease for quite a long time and it can be very frustrating when insurance dictate to a physician how to treat their patients. Please try and stay strong and keep the faith. Wishing you a wonderful weekend!
PS sorry this came in two messages however I’m still getting use to replying to the posts thanks for your understanding
Well I wish I could say my story was as good as NiteOwl's, but it isn't. I too had a nerve biopsy, but it went terribly wrong. The problem was they cut into my nerve at my right ankle, however, they had not numbed it enough. It was the most excruciating pain I have ever had. I could tell immediately by the shocked look on the nurses faces that it was a huge error. I remember lots of pain after that for at least a few days when it was positioned a certain way.
It is my understanding that they no longer do biopsys like they used to, as the benefit is not that great compared to the problems it may cause. I guess I would do some more research before you let them cut you. To this day the worse neuropathy pain I experience is in that area where they actually did the biopsy.
I have a muscle and nerve biopsy. It did help confirm the diagnosis, and thus treatment.
The procedure itself was pretty quick. Local anesthetic, and about a 1-inch incision behind and slightly below my knee. It required a few stitches, which were removed about a week or so later. There was a weird feeling during the procedure, but no pain except for one brief "shock" which I assume is when the doctor cut the nerve.
It healed up just fine, but for three or four months I had annoying intermittent tingling around my ankle, as if it were itching under the skin, or as if there were little electrical shocks going on. The doctor said it might happen as the nerve regrows, or reconnects, or whatever. It was not painful really, just annoying. One day about five months later I noticed that I hadn't noticed it for several weeks, and it never came back. I suppose that shows that I got used to it.