re: nerve biopsy

August 2, 2008 at 2:26 pm

Linda H
I hope you do good at Duke. When do you go? I know we have been waiting a long time to go to Cleveland Clinic. I really wanted him to go to Mayo in Rochester but then again we know Cleveland Clinic is good also. They are 6th in the nation on neuropathy. Mayo is first or second.

We know a young boy who went to Duke for a second opinion who has giloma (turmor in the head) and is now on chemo. He is only 6 years old and has been thru alot. It makes me think about my husband and to know someone so young who has such a positive attitude and is very brave. He knows he is very sick but he loves people and shows alot of faith as well as his mom and dad. His dad is the head basketball coach for Akron University.

My own family doctor keeps telling me to be positive as my husband is not proactive at all and he counts on me to keep him abreast of things on this support group. I have my own ups and downs. I have had company every week in July, some in June and now my own family has trouble coming with us so busy. Son comming tomorrow as I do need to see them and then after him some more. I Then it is my turn to do for myself. I know it is hard to stay positive but you can do it. Just know that things will get better . I pray for all of us and try to stay positive but it is hard. We can do it.

Good luck to you Linda H and let us know how things are going for you

re: nerve biopsy

August 1, 2008 at 11:40 pm

If it means finding out what you have you should do it. My husband did have a nerve biopsy even though we did not feel it was necessary but that is for sure a final showing of what is wrong. The only thing that was bad for him was that he was also on prednisone and Imuran. The steroid made his legs and feet swell. The swelling opened up the incision and he had to start all over again with the healing. He also got sepsis but that had nothing to do with the biopsy but his legs and feet were so bad that once in the hospital his legs started seeping out all the fluid. Once done his legs looked like he had been either a terrible accident or fell into a rasaberry patch. We had already diagnosed it as cidp ourself after our son found out about this foundation. He has been quite helpful for us although he lives in another state.

Regarding the healing. Our family doc (not the neuro) sent him to someone who works with infections that do not heal. He had a big hole and she would clean it out throughly and showed us how to properly care for it and wrap it.
Evenually it did heal. Another person I know went to a foot and ankle clinic and they somehow have something that closes it up with suction or something plus surgery.I believe he is still not healed. My husband did not have surgery. As cleansing it twice a day she began to see red dots inside and said that was showing its beginning of the healing process.

Bottom line is you need a dx. The biopsy does cause numbness but only at the spot. Also sometimes the emgs alone may not help with insurance coverage. A firm dx is needed. We are now going for a 2nd opinion near the end of August at the Cleveland Clinic, since we are originally from Ohio.

Hope this helps someone

re nerve biopsy

October 24, 2006 at 8:08 am

Hi my 8 year old had one about a year ago. They take it from your ankle just behind the bone. They told us that he may experience a loss of feeling in a very small spot and he does. Its basically a day surgery unless there is other problems. He healed very quickly and now you can barley see any scar. Wish you luck especially if they are using it for a diagnosis.:D