Vascular Birthmarks Foundation Forum - View Single Post - Right Hand A.V.M., My storie
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Old 12-09-2007, 09:29 PM
Scott C. Scott C. is offline
Junior Member
Join Date: Dec 2007
Location: Vermont, U.S.
Posts: 8
Default Right Hand A.V.M., My storie

Hello all,
While I have visited this site for over a year now, reading others' posts's It wasn't until today that I took the time to share the history of my avm. Compared to other persons a.v.m.s, I have been rather fortunate. Well here it goes:
It all started when I was in 2nd grade in grammar school-yes, I know that this is something that one is born with. While out in the playground one day, I had a disagreement with a fellow classmate. Being the little brat that I was I threw sand at the girl that I was argueing with. Her response was to grab my hand and bite my index finger (the right hand one). And bite she did!. I went to the school nurse and she bandaged it up, without the need to see a doctor for stitche's. All will be fine my mother assured me. Sure.
That weekend, I went swimming with friends at the local swimming hole. For whatever reason, I looked at my right hand and to my horror, noticed that the underside of my index finger had a bright red "stain" running along the entire lenght of the finger. Crying my head off, my mother brought me to our doctor. Our doctor had no clue as to what it was/is. I was referred to a vascular specialist near Hartford Ct. He wasn't sure what it was, but instructed my mother to bring me back in 6 mo. time. When I went back to see him, there had been no further change. He said it may be a xxxxxx or an xxxxxx (I don't remember what he said) and that It may receed as I grew older.
Over the years leading to my early 20's there was no change excepting the viens in my right hand and arm were noticaebly larger than those in my left side. Knowing that my dad had large veins, I thought little of it (as well as the doctors that I saw over the years for routine exams) By the time that I was in my late 20's/early 30's, that index finger was really getting noticeably larger (along with the veins in my hand/arm). I beleive that I was 39 when I was having an employment physical exam, that the (get this) Physicians Assistant asked, "what on earth happened to your finger?" I told him the story. "what is it?" I asked. His response was that he had no idea, but that my finger was, well, "engorged" with blood. He referred me to a local hand surgeon (South Burlington Vt.) I went to see the hand surgeon, who un-impressed, in 2 minutes time declared it to be an a.v.m. His advice was "if it's not bothering you, leave it alone". He said that there was nothing he could do with it except to "remove the digit" ( he did caution me to be careful and not to accidentally injure it, as it could bleed profusely ). I left it alone until I was 48.
At age 48, that finger was really getting out of hand ( due to the steal effect, there was little blood flow distally in the tip of my finger and had no fingerprint left ). Seeking a 2nd opinion, I went to a different hand surgeon at Fletcher Allen Health Care in Burlington, Vt. He knew immediately what it was and had operated on 2 within the past 8 years. He sayed that because it was so advanced (it was the size of a pickle at this point) it should be removed. He explained embolization as an option but really did not have much positive things to say about the technique. Do to the fact that at this point, I avoided using that finger, I decided to have It removed (and did). I thought that was the end of things but it was not.

Over the next year, I have seen many doctors. One that stands out to recommend to others to see is Dr. Robert White (radiologist) at Yale New Haven in New Haven Ct. Dr. White has extensive experiance in treating both low and fast flow a.v.m.s and has published papers on his past treatments. I believe that He started embolizing back in the 80's. You can do a "Google" or other search to read some of his papers. Meeting with him was a pleasure. He recommended a "hands off" (at least with mine) approach and only recommended embolization if I had pain caused directly by the a.v.m. I got the impression that he felt that an a.v.m. cannot be totaly cured, that It WILL return in time.

Not satisfied, I met with the surgeon that performed my amputation, who then pointed me to Dr. Joseph Upton in Chestnut Hill Mass. He's the "guru" on these things I was told (I have been told this by other hand surgeons as well) I met with Upton, (he is part of the team of doctors at the Vascular Anomalies program at Boston's Childrens Hospital).
He said that they see about 300 a.v.m.s (from all over the world) a year and that he could "clean" mine up, but cautioned that an a.v.m. is one of the most difficult of conditions to treat and that It will probably return in time.
Having been informed about the risk's of embolization techniques, and due to Uptons experiance with these things, I allowed him to proceed with his procedure to remove what was left of my a.v.m.
I'm now 50 yrs. old and have come to accept the fact that I have something that I will have to deal with the rest of my life. I may get another 20 years or so before I loose my hand. In the meantime, I have all but one missing finger and luckily, can still function quite well. I wish it were the same for everyone else that has one of these awful things!

Best to all, have a pleasant Holiday season and New Year!

Scott in Vermont

Last edited by Scott C. : 01-19-2011 at 03:20 PM. Reason: correct puncuation etc.
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