Arteriovenous Malformation (AVM) Community
Hand Malformation
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WELCOME TO THE ARTERIOVENOUS MALFORMATION (AVM) COMMUNITY: This Patient-To-Patient Community is for discussions relating to Arteriovenous Malformations, which are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. They are comprised of snarled tangles of arteries and veins.

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Hand Malformation

9008053?1365518754
I have a growth in my hand that I've had since I was a baby. It started as a small dot in my middle finger of my left hand and has progressed throughout my life. I remember it being called arteriovenous hemangioma, and I have been told it is quite a rare condition. However, everything I have been able to find online about this condition doesn't match up with what I have experienced (i.e. it continues to grow and spread, even in adult-hood, after multiple surgeries, etc.). It causes me some amount of pain and the surgeon that did the last surgery on my hand told me I shouldn't come back for more surgery unless I was willing to lose the finger (it is wrapped around the last artery feeding the finger). This same surgeon also told me that it would not progress any further. I feel she was wrong & I'm concerned that it has been misdiagnosed. It has progressed in my adult life down into my palm of my hand and I feel like it is also now going through to back side of my hand and further down into my palm. My entire palm-side of my middle finger is purple from the 3rd joint up and has large purple growths from that point to my palm. Due to multiple surgeries, etc., I have considerable loss of feeling in the tip of my finger and cannot straighten it completely.
I have had many many surgeries by several different surgeons at Mayo Clinic to have it removed and each time it doesn't go away - actually it continues to progress. Which is one of my concerns regarding having another surgery. If they say I will lose my finger for my next surgery, it will still not resolve, as it is now down into my palm of my hand and, even if they remove the finger, if it's past "behavior" says anything, it will keep progressing regardless.
My concern, I guess is that it isn't what they are saying it is and they aren't treating it the way it needs to be treated.
351246_tn?1379685732
Hi!
I know it is frustrating but yes, hemangiomas have a tendency to grow back. However, currently there is nothing much one can do about it, apart from trying partial embolization of some blood vessels that are supplying the hemangioma. Repeated surgeries have their own problems. Hence, if there is no other problem other than cosmetic appearance, it is best to leave the hemangiomas alone. Intermittent compression gloves etc or steroid injection into the hemangioma are also helpful. Please discuss these possibilities with your doctor. Take care!

The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.
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