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Scott C. 12-09-2007 09:29 PM

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

missy 12-09-2007 11:27 PM

Well, Scott... just wanted to say hi and thanks for sharing your story! I don't have that much experience with AVM's at all, except what I read around here.

Hope you have a wonderful holiday as well! We'll see more of you around here, right?


KathyA 01-02-2008 10:38 PM

It sounds like you had a different doctor to the amputation and then had Dr Upton clean it up. What did he do to "Clean it up"?

I have an avm on my cheek...can't really amputate there! It came back 10 years after a surgeon hoped he had removed it. I'm just starting my research to see what I should do now. I'm hopeful they've made some advancements in this condition over the past decade.

Scott C. 01-06-2008 02:27 AM

Hi Kathy,
Yes, I had 2 different surgeons for 2 seperate procedures. The first surgeon was Dr. Donald Laub who performed the amputation. By the time I reached 48 yrs. old, the avm was quite advanced, and I had avoided using that finger for several years (beleive me, I didn't mind getting rid of it-I managed very well not using it). After the amputation, the high flow symptoms were still present, large draining veins etc. Laub recommended Upton as he is well known in the hand surgeons community for surgical procedures on extremity/hand avm's. I beleive that his procedure involves actually removing vessels from the arterio side of the vascular system as well as having "pulled" the large draining veins. At this point, the affected area is allowed to re-vascularize on it's own (although he did perform a venous vein graft). The bulk of my avm was in the index finger, as well as an area in my palm. He (Upton) offered to completely re-vascularize my hand, but said that it would involve more than 1 surgery to do. Having been informed of the likelyhood that avm's quite often return (after an extended period of time), I simply did not want to persue this procedure. While many specialists recommend embolization, there are very real risk's (as is with surgery) with this procedure and I am not convinced that long term results are necessarily better than surgery. From what I have been able to gather, those of us with extremity avm's, (I hope that I am very, very wrong) may very well have to deal with the condition for the duration of our lives.

Best of luck with the treatment that you choose.

missy 02-01-2011 10:40 PM

Hi Anna,

Just wanted to say welcome and thank you for sharing your story and photo. Have they given you any other treatment plan besides amputation?


Scott C. 02-07-2011 10:08 PM

Hi Anna;

Take a peek at your Inbox for a Private Message.

Interestingly enough, the official classification for my A.V.M. is "CM-AVM" and despite what you see written in different texts, it is hereditary. The "CM" is an abbreviation for "Capillary Malformation" for which the gene RASA1 was discovered and identified in 2007 if I am correct. You can web search it and find a few things about it. Dr. Upton mentioned it to me when I was at his office this past Spring for an evaluation.
Best wish's for your treatment and just be sure to see experts before making any decisions.

Take care all!

Ms.Penguin 03-06-2011 07:19 AM

The doctor at Kaiser is still telling me the only solution he can see from now is amputation. I just had a MRA done but the results were very blurry so he scheduled me for an angiogram. My Kaiser plan will end this month and I will soon have Blue Cross. I'm hoping I can take the results from Kaiser and send them to Dr. Gregory Levitin in Los Angeles. I found Dr. Levitin on this site and I'm hoping he will provide other options.

(P.S. Sorry...had to create a new account with a different username.)

~ Anna

skyblu 01-16-2013 01:04 AM

AVM anyone with words of wisdom
Hello fellow readers, writers. I am 39 and have had 3 surgeries so far to remove an AVM from my hand. I have now been told to get into John Hopkins for Intervential Radiology. The AVM (tumor) is alive still. I just wondered if anyone has had any luck with these in Maryland area? My AVM did not become known until about 3 years ago. Well 19 years ago my palm swelled and fingers locked and the Charity Hospital in Louisiana thought it was arthritis. My hand is not discolored or anything like that but it is very painful. I fell lost as to really if there is true treatment for this? Hope someone replies! Rita
I have had 4 MRI's and an angiogram!!!

dancermom 02-06-2013 12:07 PM

Hi, Rita, I would strongly suggest you get recommendations from the members of before beginning treatment at Hopkins. I am from Maryland, and my son was a patient at Hopkins initially for a facial AVM. I do not recommend them for extremity AVMs, I'm afraid. If you join the website, I will help connect you with the community of members with arm and hand AVMs. The doctors most often recommended are Wayne Yakes in CO and Robert Rosen in NY; it is also possible that William Bank in DC may be helpful.

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