Hello friends! Once again i have been in pain due to growth of my pelvic avm. I went in for my fifth surgery in 2 years a month ago. I had a wide resection and 4 embolizations. This last attempt has helped to slow blood flow and growth for now but the pain in my back and leg has not subsided. My surgeons will not attempt to resect again because of the proximity of nerves the say I could lose all function in my leg if more nerves are severed. The day to day recovery is getting to me even more than the pain. The overwhelming sense of loneliness and helplessness is over bearing and there are days all I want to do is cry and give up. Also as a 26 year old woman with no children and no husband yet I worry all the radiation from scans and surgeries is going to take away my chances of having children someday and that is killing me. Anything that may help is appriciated!
Hi Msamberxo, here is my phone number 304-■■■■■■■■. Maybe we can share some information; my situation sounds very similar to yours. Pain since the age of 13, (one leg shorter than the other, hip out of place, sarcoma, arthritis, hemangioma.... you name it!) At age 23, diagnosed with Pelvic AVM. Now at 38 yrs young, I have been through surgical removal at Yale, and 4 embolization's at Johns Hopkins. Just had an MRI last Tues to review the Pelvic AVM. Its been since 2012 since my last treatment. Maybe if I can just listen it may have some bearing on your suffering. Carrie Utt- WV
Hi. Even though the AVM I have is on my face , scalp and ear I understand some of your feelings. After an emboliation and surgery the AVM came back more aggressively. My surgeon doesn't want to do surgery again because of the likelyhood that the major facial nerve would be severed and I would have permanent facial drooping/paralysis. Having an AVM is a lonely thing. Nobody understands what you are living with except other people with AVMs. Maybe your doctors could answer your questions about future children. My husband left when I got disfigured and so sick with the AVM and I wonder if any man would ever want to take me on with an AVM but it seems to me that if someone really loves you, they would. Your doctors should be willing to address some of your questions. That's part of their job and why they earn the big bucks. I'm sorry you are going through this. I wish we could all be healthy and happy and not alone. People on this site do understand how you are feeling and what you deal with with pain. We care.
Ms. Amber, I am sorry you are having so much pain and having to cope with so much emotionally. Keep posting here if it helps you feel better. Also, I would encourage you to seek professional counseling, as you have had a lot to deal with. And, please, if you ever feel in crisis, be sure to call the hotline 1 800 273 TALK. Sometimes we all need someone just to listen.
About the medical angle, can you seek a pain specialist who can try some new strategies to control the pain? Often, avm docs neglect pain management -- a pain specialist should be able to do more for you. If you can get to one, please go. I hope you feel better soon, Amber.