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-   -   AVM Left Arm - Seeking Doctor (http://birthmark.org/board/showthread.php?t=666)

stellar_x 05-04-2004 05:35 PM

AVM Left Arm - Seeking Doctor
 
I am Male 27 with AMV on left arm starting at the fingers and stops 3/4 way up the arm. I have had an MRI and been to the Boston Childrens Hospital for a consultation.
I am interested in Embolization or Schlerotherapy for treatment. Is AVM covered by insurance even though it is a pre-existing condition? Any recommended Doctors for good advice or treatment?

Thanks

Lise 05-04-2004 09:57 PM

Re:AVM Left Arm - Seeking Doctor
 
Hi,

I have pasted up part of a post about the same subject. Here it is:

"You need to see and experienced interventinal radiologist. There are several in the US. One of the best teams is in Boston, Dr. Pat Burrows is the radiologist and she works with Dr. Steven Fishman a surgeon along with many other experienced doctors. You can reach Dr. Burrows office directly at 617-355- 6579 and the Vascular Anomalies clinic there at 617-355-5226 ask for Carol. Dr. Wayne Yakes is in Colorado at 303-788-4280. He does the most number of procedures and is very aggressive. Dr. Mark Ryan at Duke University is also very experienced 919684-3401 ask for Jean Curtis,RN.
AVM can become very problematic, please seek the opinion of someone that has experience in the managment of these masses. (by KayOne, January 2004)"

Dr. Wayne Yakes in Colorado is a name that I've seen mentioned at a few places, he seems to be the most experimented when it comes to AVM.

As to insurance coverage, being a Canadian, I can't tell you.

I hope this helps a little. Good luck with the embolization (why sclerotherapy -- is it also venous??).

Lise (AVM of the lip operated by Dr. Milton Waner, but he's a head and neck surgeon, I don't think he would perform a surgery on an arm)


Kerri 06-04-2004 03:55 PM

Re:AVM Left Arm - Seeking Doctor
 
Hi. My daughter (8years old) was born with an AVM on her left arm also. Hers also starts on her fingers on goes about 3/4 up her arm. She has had a couple of laser treatments on her upper arm, the portions that are not raised. I would be interested in seeing a picture of your hand to compare if you dont mind if you have a digital camera and know how to do it! (I don't know how to post pictures!) Also curious to know how it has changed at all as you have grown. All the Drs. we have seen have said that they have not seen one like hers.
thank You

nickbar 06-04-2004 07:47 PM

Re:AVM Left Arm - Seeking Doctor
 
Kerri,


if you are interested in a support group:
http://groups.msn.com/vascularbirthm..._whatsnew.msnw

we have a lot of pictures (not many avm;s) but we would love to have you... its a great place to compare notes on treatment, living with the public's comments, doctors etc.

If you have any questions, let me know

Corinne Barinaga
VBF Director of Information Services
MSN VB Support group

ghbemis 10-13-2004 03:01 PM

Re:AVM Left Arm - Seeking Doctor
 
This is my first time in the site, but have AVM left hand, diagnosed in 1986 with the only MRI in Colorado was at CU Med Center - no one wanted any part of surgery due to probability of amputation. I was fortunate enough that local physicians found Harry Buncke, MD (at that time the best "hand-man" in the world) at Davies Hospital in San Francisco. The Buncke Clinic has its own site and while I'm not sure how much surgery he still does, 2 of his sons trained with him. By the way...after 9 surgeries (it's been 10 years since the last) - still have the hand, all the fingers and they all work well. -

eprmo 10-13-2004 06:52 PM

Re:AVM Left Arm - Seeking Doctor
 
I live in St. Louis, and there are many wonderful hand specialists at Washington University, also I am involved with a vascular birthmark medical group here that has clinics one a month. They bring in all types of specialists and one is an orthpedic surgeon. If you are interested in more information, please contact me at:
psyelectro@aol.com

Elissa


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