Adult with pain/ need moral support

Hi, I am new to this site and am so relieved to find others that can empathize with my hardships.
I am 43 years old and have extensive avm's (which were diagnosed as cavernous hemangiomas for many years) on my arm, chest and neck (right side only)
I had my first surgery at 4 years old and had my last one at 31 years old. I have the use of my middle finger and thumb, no wrist movement, some elbow and shoulder movement. I have had pain all of my life but since puberty it has progressively gotten worse. I have tolerable pain control but it does worry me about the future. I have just found a vascular Dr. at UCLA and am scheduled to go for an MRI and angio-venogram next wed. because he thinks embolization might be of some help. He says my prognosis is poor for the future that it will continue to grow and get worse and that eventually will probably have to have an amputation at the shoulder! What about the chest and neck though?! Anything that increases my heart rate directly increases the pain (even just bending over). Does anyone have any suggestions or thoughts, feelings etc. Please e-mail me at GPRLady@aol. com Thank-you, God Bless

hang in there do what works for you ! Iam 40 and have very massive vascular malfofmations God loves you You are not alone i feel and understand your pain .