Hello, I am new to the group, but not new to the problems that we are facing. I am a 54 yr old woman, married with two healthy sons that are also married. I was born with an avm, told it was a hemangioma and had several surgeries throughout my life. The AVM continued to grow in size and location! Most of mine is internal on the right leg and lower back. Also, there is the right arm that is involved as well. What I am facing is similar to your problem, no surgery is left as an option, and sclerotherapy isn't an option as well because the avm is too complex and too deep. I had radiation as a infant and as a child. My parents were told that this was to be a great help. Well, of course it wasn't and the pain is something I can't describe.
i am currently undergoing pain management therapy which consists of taking narcotics and it makes my life somewhat better. My problem now is dealing with some lung issues. I have been told that the avm will possibly grow into the internal organs. GREAT NEWS!? I really don't know what to think about this new phase in my life. I will be going to the lung specialist tomorrow. The testing that I have had shows that there is nodules in the lungs and along with the PFT (pulmonary function test) shows the numbers are very low the verbal assesment is possibly pulmonary fibrous.
Needless to say I am confused and don't know what if any the role of the history of the avm will play with this possiblity at all.
Does anyone have any experience like this? Has anyone ever heard of this?
I have had to use the information from this site to take to drs. from my state to Duke University, and Cleveland Clinic to make them fully understand my circumstances.
HELP PLEASE! My name is songbird...............i have no new song to sing!