Hi guys, my name is Sarah and I am a 25 year old registered nurse with an extensive AVM history. My AVMs were present at birth and at the age of five I got my first surgically removed from my tongue. I have small residual and a curved tongue now! After the age of five I endured three more surgeries to remove the AVMs from my neck and left cheek. I have medium residuals but the doctors I see at Mass General seem not to be concerned. I see the MDs, in the cancer center? I dont know why, maybe because they do not know where to put me, every six months for MRIs and check-ups. What kind of Drs do you guys see? I am looking to get information and maybe ease my anxiety through this site and making friends like me. I do not have AVMs in my brain only lymphangeomias and deep AVMs everywhere else. Is that wierd my MD said I prolly have little ones all over? Also, a new small, 0.5x0.5cm area just showed up a few days ago on my left lateral chest. Do you guys get new ones? Should I go to the doctors an hour and money away or just watch it? I know must of us are not doctors but I think the experienced of you can give me more info then any MD.What are the treatment options you find most effective, surgery seems a waste to me becasue they just grow back. I have to learn to navigate the site but here is my autobio lol. Thanks!
Hi, Sarah, has anyone talked to you about HHT? It is a syndrome that causes multiple AVMs: http://en.wikipedia.org/wiki/Hereditary_hemorrhagic_telangiectasia
There are two to three dozen members on this site that have HHT. Click on this link, and you can connect with them: http://www.avmsurvivors.org/main/search/search?q=hht
Hi dancermom, I have been tested and am negative for HHT. Many of the symptoms are simular to mine but no one seems to be able to classify me
I see a neurosurgeon in the cancer center. I think most doctors that deal with AVMs usually deal with tumors and skin cancer so that is why their offices are located in cancer centers. I had an AVM in my brain so that is why I go see that particular doctor. I know from my research AVMs can grow anywhere in your body. As for going to the doctors or just watching it, I would recommend that you follow what your doctor says. If you don't feel comfortable with that, I would get another opinion from another doctor.
Hi, Sarah, even without a diagnosis, I encourage you to connect with the HHT folks, as they may still be of help to you regarding doctors and treatments. I know a few of them have talked about having hundreds of AVMs. Most of us get overwhelmed having just one, so I can only imagine how tough it must be emotionally to have many of them.