cjd/brainbiopsy

[Guest guest]

My name is Carolyn-Marie. I sent in an introduction awhile back. My husband has

had cjd for 6-1/2 months. We are caring for him at home. I have read several

concerns about brain biopsies. My husband had a brain biopsy at our hospital in

Chatt.,Tn. It was sent to the Prion Center in Cleveland,Ohio. Dr. Pierre

Gambetti studied it. He called me two weeks ago. He was very kind and

informative. He told me there were two types of cjd, type I and type II. Type

II is the nvCJD or the kind some call " Mad Cow " . According to him, although to

me it is questionable, the type II is not in the U.S.A. He said my husband had

type I. There is a difference in the way the brain tissue looks between the

two types. Of the type I there are three ways of getting it, sporadic which

means no one knows how it is contracted, iatogenic,which is contracted through

unsterile surgical instruments, and genetic, or inherited. My husband does not

have genetic so that means he would have iatogenic or sporadic. I feel he has

the iatogenic due to a detached retina eye surgery he had 10 years ago. There

was some reluctance to do a brain biopsy at some of the hospitals we went to. I

did not want a brain biopsy but felt that if there was anything else at all that

was causing his problems that it might could possibly be treated.

Unfortunately, that was not the case. I hope this is not too long, but I felt

it might be interesting to some interested in the brain biopsy. He was very,

very ill when they did the biopsy. I, of course, will never know if it did more

damage to him, I was assured that it did not, but you know how that goes. I

have not had a very pleasing experience with the medical profession. I feel

that they really do not care, there is not enough money in it for them, or the

pharmeceutical companies. One other thing Dr. Gambetti told me is that with

Alzheimers Disease there is a lot of research going on (you know, the amount of

money they could make off of it, I guess). He feels that when a cure for

Alzheimers if found it will mean a cure for CJD. I hope and pray this is so.

Thanks. Carolyn-Marie