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AVM Survivors Network

AVM and amputation


#23

Hi, I was just reading an older message where you describe your AVM and that it involves muscles and bone. I had a pretty obvious one in my thumb since birth but it has grown and changed so much to encompass all of the hand, thumb up to the shoulder. My wrist is the worst part and is massive compared with the other one. I thought I knew all about it, being 41, but I haven’t had treatment for over 20 years and the latest scans I have had as a result of the significant increase in pain, show bone as well as the veins and muscle all affected. I knew they hadn’t grown the same as the other arm but I am surprised at the extent of bone lesions. They have even suggested I have Maffucci disease which is related to the bones. I am now waiting for referrals but similar to you I am feeling like the options are limited. All I want is the pain to reduce and I am certain no amount of surgery can guarantee that. I was just wondering how you have got on recently as you mention waiting to see a bone person.