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Old 01-06-2012, 07:23 PM
vicky vicky is offline
Junior Member
Join Date: Jan 2012
Posts: 2
Wink vm in face

Hi I have vm on the right side of my face, I didn't know I had it until I was 18 and in the RAF. Since then I have had it surgically removed over 25 times, I have every new treatment possible. I have a droopy face but not as bad as it was, and pain every time I put my head over. I am know 40 and they say mine is spreading downwards into my neck, I had the injections of the foam in September, it was painful, has took a long time for the swelling to go, but at the present time I feel no better but worse. I live in England and have never heard of anyone having the same a me, even though I have had Professor Ian Jackson from America be my consultant for many years until he retired. I feel very lucky to have so many Dr try and find solutions over the years but I am always interested to hear what others are trying. So stay positive, be open to suggestions, but always think through the side effects too.
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Old 02-14-2013, 08:12 PM
tonilynn910 tonilynn910 is offline
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Join Date: Feb 2013
Location: New York
Posts: 3

I am 35 years old and have an avm in my neck and throat. It started as a little pea when I was born and after puberty grew to the size of a softball or bigger. I went everywhere to find out what it was. Finally saw a doctor at Boston Children's Hospital to told me what it was and the next step. After all the tests were done I was referred to Dr. Berenstein in NYC. It was there where I had direct embolization and sclorotherapy done. I had to have it again 8 (2001) years later due to it growing in size. Here we are 12 years later and I am finding myself in the situation again, only this time it is growing into my throat. I had a temporary breathing tube put in 8 years ago and fear that I will have to have it done again maybe permanently. I have had 2 beautiful children since then (considered high risk pregnancies). I don't want anymore procedures done because I feel that they are only a temporary solution to my problem. I get depressed because I cant do a lot of the things I would like to. I want to have another child because i felt better pregnant than i have ever felt not pregnant and really want another child. My OB tells me no until i see a dr. I went to see a local doctor who looked at me like i was crazy to even think of having another child.
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Old 03-24-2013, 02:12 AM
dancermom dancermom is offline
Join Date: Jun 2012
Posts: 44

Tonilynn, I recommend you see Dr. James Suen at UAMS, who specializes in head and neck AVMs. UAMS is hosting the fourth international symposium for vascular anomalies of the head and neck this month. Dr. Suen is an amazing doctor; patients come from all over the world to see him. And, yes, you must not get pregnant until the AVM is under control. Dr. Suen's team has discovered progesterone receptors on avms that cause them to progress and expand during pregnancy.

At, there is a Pregnancy and AVMs group that may be useful to you. Best wishes!
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