Dr Thomas this week
AnonymousJanuary 5, 2008 at 1:10 pm
This will be my husbands 2nd trip to this doctor and we are hoping we at least may get a firm diagnosis. A spinal tap was done a couple of weeks ago and a ct scan. We will question a foot bioposy as my brother-in-law gave him an article that says a skin bioposy works just as well and also if a nerve bioposy is done it can be rejoined into the foot. We will take the article with us. So far though both the doc and us think it is cidp.
I have (his wife) been reading alot about b-cells and fass but do not really understand it. He is not reading his e-mail alot or even getting into this web site I am sure because he is depressed and just waiting to see doc again. He will read responses to my or my son-curious scott but that is about all.
January 5, 2008 at 5:58 pm
If you need back up regarding why NOT to do the nerve biopsy, just hit the search button at the top of the screen and type in nerve biopsy. You may find more liks to abstracts as well as personal experiences (none that are favorable). Print the abstracts as well as the personal experiences to bring to the doc. FIGHT! Do not give in if you do not want it. I did to keep Kevin off Cell Cept, and our doc reviewed my abstracts and my concearns and agreed with me. If you have a good doc (like we were blessed with) he will examine everything, research, what is best for you and make a call from there. If he is closed minded, I would be aprehensive. Good luick!
Dawn Kevies mom
AnonymousJanuary 6, 2008 at 12:50 am
If the doctor feels it is CIDP and he doesn’t need more prove DO NOT do the nerve biopsy. Speaking from personal experience it is nasty and you will never regain the feeling in your ankle where the nerve was taken. I got bad infections and now have a lumpy scar.
If your hubby is in pain he needs to get on some pain meds. I take gabapentin. Without it the pain is bad. I also have IVIG treatments when needed.
Rhonda from Canada
AnonymousJanuary 7, 2008 at 3:06 pm
There are two types: 1-a full sural nerve biopsy and 2- skin-punch biopsy
The first is ‘usually’ done to confirm a diagnosis if other key test results are inconclusive….be forewarned, some doctors are ‘eager’ to do it, just to have experience doing it. There are many dangers and side effects with this process, infections during healing [something none of us need] and there will be absolutely zero, none, no feeling at that surgery site. Damage from this test is permanent.
To make it worse, many insurance companies do not cover or endorse this procedure anymore. Because of the side effects and dangers.
The second is usually done to assess ‘small fiber neuropathies’ and really doesn’t cover all the nerve damage issues CIDP’ers have. Few hospitals in the US do it on a regular basis, and also some insurance companies are not covering it yet, as it is considered ‘experimental’.
I myself encountered a neuro who was one wanting to have the ‘experience’ of doing this surgery….I met every single other CIDP diagnostic criteria there was so I flatly refused his offer, and never went to him again. I still cling to the hope that my nerves might get better. I would hate to lost that hope, and I would be even more dangerous walking with one dead foot…so to speak. Do not let any doctor rush you to do that biopsy – please, please, please!
AnonymousJanuary 8, 2008 at 12:53 am
Ali: What exactly have people said about the nerve biopsy. My brother-in-law gave us something from the internet regarding the nerve biopsy. It stated that a skin biopsy was just as good or you can get the nerve biopsy and then it can be sewed back in place. Have you or anyone heard about this.
Right now my husband just wants to start some type of treatment as soon as we get that longing diagnosis we have been waiting for. Tomorrow is the day we should have it.
January 8, 2008 at 12:24 pm
Based on the replies you have received about the nerve biopsies, I must have lucked out. I had a sural nerve biopsy from my left foot which confirmed the CIPD diagnosis. I had no problems with the surgery and the only negative, was loss of feeling in an area about the size of an egg on the outside of the foot below the ankle and about 3-4″ toward the toes, which they told me going in, so I was prepared for it. For me its been a non issue. I have had no problems walking, etc., just the “numb” spot. Tissue sample testing was not an option when I had mine done, so I cannot comment on that test. Hope all, goes well for you and keep thinking positive!
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