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-   -   Surgery or No surgery? (http://birthmark.org/board/showthread.php?t=687)

mom2KandK 05-13-2004 07:26 PM

Surgery or No surgery?
 
I'm the one with the 7 year old daughter with an AVM in her brain. This question, like most of you, I'm sure is the hardest one I am dealing with. The AVM is too deep for radiation, they are not sure if they can get it with a catheter, the only sure way to get to it is a craniotomy.
I can't even imagine someone cutting into my sweet angel's head! My concern is; what if we go with the surgery and she is left with brain damage, paralysis, loss of vision, motor skills, or worse death? What if we choose to avoid surgery due to the risks and then a few years down the road, something happens to her? Do the risks of surgery outweigh her risks of something happening in the future? I feel like no answer will be the right one because if something happens to her, I will never forgive myself! Krischelle is such a happy, vibrant child and my heart tells me to forget the surgery and that God will take care of her. I believe in all my heart that God can heal her and I never want to doubt him, but I am still a mother who fears for her child and the quality of the life that she lives. Does this ever get any easier? I am taking her to another Pediatric Neurosurgeon at the University of Indiana but so far all of the Doctors agree that Surgery is best. I don't know what to do.

Lise 05-14-2004 05:36 AM

Re:Surgery or No surgery?
 
Hello,

I have an AVM of the lip, that was operated last year. I'm so sorry that your daughter has a serious health problem at only 7 year old. Making those decisions is very difficult -- no one can tell the future -- but I'm confident that in time you'll find out what is best for your child. Only don't forget that it's normal to be scary of a surgery such as craniotomy. Have you discussed with the doctors who would operate about all what makes you anxious?

I don't know much about AVMs of the brain. Since you've been on Internet, maybe you know www.angiomaalliance.org?

I wish I could help you more. Take good care of you.

Lise in Montreal

Lise 05-16-2004 03:31 PM

Re:Surgery or No surgery?
 
Hi,

I've done more research on the matter of AVM of the brain. Linda Shannon, the President of VBF, recommends Dr. Alex Berenstein at Beth Israel in New York City. She says he has the highest rate of success for removing and cure of AVM of the brain. I also found what seems to be a very well informed support group at http://www.westga.edu/~wmaples/aneurysm.html.
I've e-mailed to you those informations and post them here for future reference.

Lise (AVM of the lip)

eprmo 05-17-2004 12:12 AM

mom2KandK
 
Please send me your address so I can mail you an article that just came out in the Children's Hospital of St. louis's Doctor's Digest Magazine.

This article is about "children born with avm's on the brain and new powereful treatments that requires no incision and has minimal effects on surrounding healthy brain tissuue".

Write me your name, address, etc..amd I'll mail you the article so you can look into it and research the doctor...

Elissa@
psyelectro@aol.com

make note in the subject area that's it's the VCBF article


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