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Old 07-26-2011, 05:22 AM
Karyng Karyng is offline
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Join Date: Jul 2011
Posts: 1

Hi Ms Penguin, I am 62 years old and have had an AVM in my middle right finger for as long as I can remember. It did not show up as a problem until I was in my late twenties.
I have had an angiogram where they inserted a small spring in one of the veins to block it off. Trouble with this is the AVM is in the tip of my finger and they could only get to the base. This seemed to have fixed the discolouration in that part of the finger but they said that I had too much of a mess of veins in the fingertip to be able to do any more. It is gradually getting worse and I am looking at the only option given to me which is amputation.
I have read on the internet about radiosurgery but I am not able to find out if that will work in this situation. I would welcome any new information you might find.
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Old 07-26-2011, 12:22 PM
missy missy is offline
Join Date: Apr 2006
Posts: 1,794

Hi and welcome!

You might benefit by asking one of our experts: http://birthmark.org/experts.php and seeing what their response is.

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Old 07-29-2011, 06:10 PM
ericinfo ericinfo is offline
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Join Date: Mar 2010
Posts: 12

email dr. levitin a picture of it. he's great.

he did my surgery.

drlevitin at gmail.com
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Old 05-09-2013, 06:46 AM
sberry sberry is offline
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Join Date: Feb 2013
Posts: 1

Originally Posted by joedmond View Post
Okay, I have a similar situation and I sincerely hope that you have an MRI and ultrasound done before you proceed. I have an av malformation in my left thumb and will undergo my first treatment and arteriogram this Wednesday. My primary first referred me to an orthopedic surgeon who then referred me to a hand surgeon who then referred me to Dr. Antonacci at Carolinas Medical Center in Charlotte, NC. Dr. Antonacci worked in Boston and performed an average of 5 of these surgeries on av malformations per day. He tells me that malformations can be mistaken for hemegiomas and some doctors even administer steroids resulting in the loss of a limb. Basically, although this is anything but, my malformation occurred when my arteries and veins formed together without conjoining capillaries. Anyway, my point is... PLEASE make certain of exactly what you're dealing with before your child goes under the knife. You'll want to know how experienced your surgeon is in this particular area. How successful he or she has been with past surgeries. What procedures will they use? Will there be an angiogram or artereogram which involves a catheter through the groin. And most importantly, will the body part operate like normal after the operation and how will it look?
Do you have an email that I can contact you at? I really want to hear more about your situation. I am going through such a difficult time dealing with vascular malformation on my fingers. It has spread so much throughout my fingers that a doctor recommended that I do nothing because any kind of treatment or surgery would be too risky. However, I just cannot sit here and watch it get worse.
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Old 05-27-2013, 04:56 PM
dancermom dancermom is offline
Join Date: Jun 2012
Posts: 44
Default Do you belong to AVMSurvivors

Sberry, there are a good number of members at AVMSurvivors who have avms or vms of the hand. Wayne Yakes in CO and Robert Rosen in NY was the most often recommended doctors for hand avms. If you join, you can open a discussion and ask for other recommendations.
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