I have been emailing for the last few days with a guy who also has a facial AVM. He has opted for surgery instead of embos. Him and I have had a friendly debate over the benefits of each treatment and agree that we would make a great "case study" to see how the two options are both similar and different, which is better, and what the long term results are. So here is the story he sent me detailing the last 32 years for him!
I was born 8/9/76 with what appeared to be a port wine stain on my right cheek. My parents were told it was a hemangioma and would go away by the time i was 6 or 7. It didnt. My parents found a surgeon to speak with (Mt. Sinai hosp) and his recommendation was surgery (at this point the term AVM didnt exist). My parents (and i guess myself, i was 6) felt that was a drastic route to take so they sought another opinion, a Dr. Sedak Hilal. He had a new procedure (that i believe he was part of pioneering) called embolization. A non- surgical way to control the growth. So rather than a massive invasive surgery, we could work on it with a non-invasive, less risky, procedure (though still very risky, stroke, etc) I had 2 embolizations at the age of 6 1/2 and 7. Then another at 10 (with minimal improvement in size, it would come down, then pop back up (it was always swollen, even from birth).
At the age of 14 or so (when i hit puberty) we saw a large growth in the AVM and decided it was time to explore surgical options. We met with a Dr. Mark Sultan (columbia presbiterian, recomended by Dr. Hilal). And the plan was to operate (nov. 19th, i remember that date well for some reason)...but in the preparation for this i had visited with a neurosurgeon who felt that the AVM was too massive and that any attempt to remove it would be seriously life threatening. So we backed out and I had 6 embolizations in a 9 month period (my 10th grade of H.S). Dr. Hilal also had developed an experimental substance (he called the Hilan Gel) similar to the glue they now use...it worked, but again not for long.
At the age of 17 it began to grow again, this time more than ever before. It got to a point of ulcerating the skin and bleeding from the surface (up to this point, unlike you, i had never dealt with bleeding). This scared me, so i sought a dr. that Dr. sultan had said he had trained under in Boston, a Dr. Mulliken. He saw me and said there is only one thing to do. and i quote "Remove that sucker." He at the time had operated on 12 AVM's similar to mine and that was considered alot. He was considered at the time ('95) the worlds leader in this. So we went ahead with the surgery. 2 preop embolizations, and 21 hours of surgery later, I made it. They had to use skin and tissue from my abdomen in whats called a tissue transfer to make up for the loss of pigmented red skin etc.. It looked ok, but one more surgey later, it looked alot better. I had another surgery in '97 then again in 2000.
The problem now is regrowth. It continues to want to proliferate itself. So from 2000 to 2004 i left it alone, fed up with it really. It continued to grow. So finally in 2004 i decided to go back tothe dr's i once saw in NY (dr. sultan) and see what if anything new is out there. He sent us to Dr. Alejandro Berenstein (who you should know, the pioneer of the alcohol embolizations, and the absolute best at what he does (endovascular surgeon))...He told us about this amazing doctor, Dr. Waner, who is coming to NY soon. Timing was perfect as I was one of the first patients he treated in NY. He operated in 2004, then i had follow up cosmetic procedures (3 of them) with another surgeon (which didnt work out so great) But am now back with Dr. Waner ( i had my most recent surgery in April, i have one scheduled for october and then, i think thats it. Hopefully. And it looks amazing.
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