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AVM Survivors Network

File for disability?

Four years ago the mystery of the bump on my arm was solved when my AVM was discovered, and an aneurism, as well as a fistula were removed. The ball of spaghetti, known as an AVM was removed from my left wrist/arm and I was left to recover. I was told that eventually, the AVM would grow back and surgery would be needed again, but I didn’t believe it. My arm was never the same again. Living in Northern Maine, I drove all the way to Boston to see a team of vascular surgeons, who told me that frequent surgery was my only option.
A month ago, the AVM came back with a vengence, out of nowhere, and hit me like a sucker punch. The pain was so terrible, and it has only gotten worse. I am taking pain medication, trying not to use that arm at all, and waiting for my surgery date to come up, where they will open my arm from the wrist to the elbow. Again, my arm will never be the same again. I’m told that it’ll only get worse from here. I guess I can’t deny it anymore. That’s why I joined this support group. I don’t even know how to answer people when they say “what is wrong with your arm” and I think I hear that ten times every time I leave the house. I just feel like hiding in my house forever. I feel too embarassed to wear my sling, but my arm hurts too much not to.
Yesterday I saw a therapist to help manage the pain and the depression that is beginning to set in. I am entering my senior year of college and I don’t even want to think about going to work. Not now. The therapist wants me to file for disability. I am sure that at some point I’ll adjust and find a job that works for a one handed person. In the mean time, I just don’t know. SO many people thrive with one arm. Maybe they were born that way and don’t know any other way, or maybe they’re strong enough to adjust. I feel like filing for disability is like giving up, but both my husband and my therapist want me to file. I doubt any doctor would support that deicision, though.

Any thoughts?

I’m so sorry you’re going through this terrible pain.

I don’t have experience with an arm AVM, but I can speak to a few of the things you’re going through…

  1. About your sling: try to “make friends” with it. I use a cane, and I felt a lot better about it after I got one that I like. It did cost more than a regular cane from the pharmacy, but people often ask if they can take a closer look at it, and sometimes people say that they thought I was just using it as a fashion accessory instead of for medical reasons. I still get stared at for being a young person on a cane, but it helps that my cane is expressing something I want it to, instead of just marking the fact that I need help walking. Can you cover your sling in some fabric you like, or have friends sign it like a cast, or dye it another color? Or just give it a name, if you like.

  2. Yes, you will be able to find work and have a life you like. At the moment, though, you’re having a hard time, and it sounds like your therapist might be suggesting that you focus on handling your AVM and the upcoming surgery. Filing for disability is a hard decision to make, but you can do it in the spirit of “I need this right now, to get through this hard time,” and not let it define you. You don’t have to stay on disability once you’re on it. If you do decide to file, it might help to ask the therapist to call the doctor, to lend his/her support to your decision.

  3. Before going back to school, you might want to think about going to your school’s office for disability services and talk to someone about what you might need during the year.

Best wishes for your surgery.
-JH

I couldn’t have said it any better than JH did. I can only empathize with your pain but us of us AVMers can relate to part of your story. People look at your like an alien if you mention “AVM” and it’s tiresome to have to explain. As far as disability goes…it’s difficult to get, but not impossible. You may not get full disability, but you can still get benefits even if you’re not deemed completelly disabled. And like JH said, it doesn’t have to be forever and you’re not giving up. You’re doing what you need to do right now. Not necessarily forever. Focus on your AVM for now, while you need to.