After 2 years finally diagnosed with CIDP 3 months ago. The neurologist wants to take a nerve/muscle biopsy but she was having a hard time finding a surgeon to do both. The first surgeon would do the muscle biopsy but not the nerve. Finally got the good news that there is a doctor here that will do the muscle/nerve biopsy? Has anyone had that done? The surgeon says that I have to be put under instead of a local. Please let me know if anyone has gone thru this and what exactly are they looking for? I meet with the surgeon on the 19 for the consult and then the surgery is scheduled 8 days from then. I am scared and my family doctor really knows nothing about this disease. Any comments would be appreciated. Thanks all and have a blessed Christmas.
Hi, I had a sural nerve biopsy about 5 months ago, but not the muscle biopsy. I had a general anaesthetic altho from reading about it it seems that a local would do. It was a larger cut than I had expected - around 2 -3 inches and because they actually remove a piece of the nerve - I have quite a bit of numbness in my leg and foot. So I would say only get it done if you really have to. I am still not clear as to how much additional information the biopsy gives them and how crucial it is for diagnosis. Many people seem to be diagnosed without it. Sorry I have only just seen your post - so you have probably been to the doctor already :-). Let us know how it went and good luck with it.
I really appreciate your reply. And yes I had it done 2 days ago. I thought I was just meeting with the surgeon and halfway in the conversation he said are you ready to have it done now or do you need a few days. Being so new to this and since I have undergone every other test known I just went ahead and did it. It was a local but I would rather have been put out. It hurt and I really hope I do not scare anyone else away from it. They said it was needed to find the origin of the CIDP but if I have the diagnosis I do not understand what matters where it originated from. It is day 3, still very sore but sometimes I feel like I have to listen to the Doctors and do the tests they say. Do you know why they need to know the origin? And what can they tell from it? I just wish I had done my Christmas shopping before I went to my appointment LOL. I thank you so much for responding and hope I added you as a friend on this site. Still not quite used to using the site and finding my way around it. Finally, how are you doing, what stage are you at If you do not want to answer personal questions I totally understand. But I wish you a very Merry Christmes Cindy
Hi Cindy,
I too have had the bx done , but under general, but would’ve rather it got done at the doc office…lol. No pain whatsoever, never even filled the pain med given to me, actually just threw out the rx last week! I am sorry you had discomfort! My incision was about 2 inches total, & I had a definitive dx before the bx & the results did not change my treatment regimen or meds, so I just think it was checking for atrophy perhaps?? Oh, my procedure was done in Phila @ Th Jefferson Univ Hosp by a Neurosurgeon there.
Wishing you a speedy recovery, hoping you were able to finish your shopping, & wishing you a beautiful Christmas Season Merry Christmas & Happy New Year!
sorry to hear it is sore. I had a general like NiteOwl but would rather have had local. I didn't have much pain but have to say that I would not have wanted to do any Xmas shopping 3 days after having it done ! :-) I was given 4 days off work and told to keep off it as much as possible for 2 weeks. It was done back in June (Melbourne, Australia).
Sorry I don't know anything else about what is shows. So let us know if/when you get any more details. I was given dx after the biopsy results came back - that took around 6 - 7 weeks.
Started the ivig treatment at the Monash Hospital - called a 3 day loading which was to be followed by monthly infusions. I had a pretty awful reaction to the infusion on the 3rd day. My neuro has decided to put it on hold until early next year as my symptoms do not appear to be progressing very much and what I have are only mild. it all sees to depend on lots of different factors. If I have to have more infusions it will be a different brand (I had Octgram before) and I will certainly be taking phenergan (antihistamine) and drinking lots and lots of water beforehand.
I have received any friend request from you - so maybe it didn't work.
Good luck with it and if you don't mind let me know what happens and how you go.
hi sweetheart..im soo sorry to have met on such terms..big hugs to You!!! When i went to having tests done to see what i had they done a emg..a needle test that shocked the nerve endings then the core of the nerve to see how bad things were. That showed edvience of it and then to diagnose it my doctor..Dr.Laing Lu from Birimingham Alabama done a nerve biospy of my ankle. I didint have to do the mucsle biopsy..they sent the nerve biospy off and it came back with postive test results of CIDP. You want to ask if you can have just the nerve biospy as well. No since in having a complete surgery if you dont have to. With mine it was done in the clinic with a local. Most incisions are 2 inches long but because i have another disease it ended up being 4 inches. Not gonna lie it was extremley painful but i didnt have to spend time in a hospital nor go as far as a complete surgery. The other test available that my doctor said was the spinal tap. I had to stay off my ankle for several weeks and used crutches. My primary doctor also didint know anything of the disease either. I noticed i have had to educate lots of doctors and nurses on my condition. You are your best advocate..my advice research,research,research.I hope this has helped. Good luck and big hugs..keep us informed if you will?
Went back and read more..they said mine showed damage to the mylein sheath the covering around the center of the nerve. The damage done to my nerve covering was pretty bad and thats when my Dr. suggested the IvIg infusions.
Thank you Naree, Amy & Night Owl I really appreciate the time you all took to respond to my questions. I did have it done 4 days before Christmas (that explains why a lot of my Christmas presents were IOU's LOL)
Before this test I had the nerve test (which hurts by the way) and any other test they could think of. That is how I received my diagnosis of CIDP. Mine seems to be a bit strange though because it has been primarily only on the right side. Then the Doctor noticed leg wasting and that's how I ended up going for the biopsy. And probably if I stayed off of it it would not have been so painful. Now it is more like a numb with sometimes extreme burning down the side of the right leg. Feels like it is on fire right where the knee cap is. But it is over (well, except for the usual pain now) and just have to wait until I hear from the neurologist as to the treatment. They also requested another heart ultrasound. Mornings especially are really bad for me. But life goes on around you whether you want it to or not. I am trying to still work full time and build up a support system because at the beginning I did feel so alone. Every time I complained about something the Doctors would say oh it is just arthritis or age (I am 51) Now I have a wonderful family physician who never even heard of CIDP/GBS. So here in Canada a wonderful lady sent me a packet of information so the next person will not have to go thru all that we do.
Wishing everyone a wonderful 2013. This is an adjustment I just wish I would hurry up and get adjusted to asking the right questions and being an advocate for myself and anyone else that is new. Luv to all!
Naree I have tried the "friend" button again and it says I cannot message you until you accept my friend request?? LOL But we can still be friends without the computer, at least I hope.
Merry Christmas & Happy New Year!