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5189993 tn?1364912157

Hand malformation

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).  It causes me a considerable 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 grow 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.
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3149845 tn?1506627771
Hi and welcome. In cases of this, would be to your best interest to have multiple opinions. But bottom line, if all opinions are to lose the finger to get this resolved you might consider it. Why dont you start by having another biopsy to determine what this is. Have they done a biopsy before?
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Avatar universal
Its just a ganglion cyst you will have to get it surgically removed.
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5189993 tn?1364912157
It is not just a cyst.  I do know that much for sure. I have had many many surgeries by many 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.
So, I guess I am looking for someone who can either tell me what it might be and/or direct me to a specialist that might know what it really is (and not assume what it is based on my records) and might be able to suggest alternate treatments.
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Avatar universal
Since the Mayo clinic couldn't help - maybe it's time to try John Hopkin's hospital.  angiomas do seem to have a mind of their own.  Some do continue to grow and others are stopped by surgery.  it is one of the mysteries of science and would have to be researched by someone who knows more about them.  Do you get the Medical Mysteries on your TV?  Perhaps you can find someone who knows how to stop the growth or the arteries from spreading...  So sorry this is happening to you..
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