I don't post very often on here, so here's a quick rundown of my situation. I have acromegaly, had surgery for tumor in Oct 2002. Went on Sandostatin, then Sando LAR, then Somavert, then briefly Somavert and Sando LAR combined. I can rarely get them both at the same time, so the treatment is never steady.
I had radiation in January 2005, 6 month MRI in June showed no change from radiation. 12 month MRI not done yet.
My IGF-1 levels have NEVER been normal since diagnosis regardless of treatment plan. There is *some* response to the drugs, but not enough to normalize the levels or to keep them low.
My jaw has grown out to the point where things are getting uncomfortable. I had hoped to avoid another surgery if I could, but now I'm starting to look into ways of correcting this. Has anybody been through it? Is it considered cosmetic? Is the healing time horrible? Do you ever really regain any normalcy? I know nothing about this procedure.
To make things more fun, I moved from the Dallas area to the San Antonio area to be closer to family. My insurance at my new job is worse than the old. They cover 75% of meds at the sando/soma level. I'm just beside myself on how to treat this disease with no affordable help, and chronically battling insurance companies and doctors offices to get what I need. Technically, I'm covered, so patient assistance programs won't help me. But how can anyone afford 25% of the cost of these drugs? If anybody knows of any programs that can help people in my situation, I would appreciate it. I'm not even eligible for Mass General's study because I've had radiation and treatments on somavert and sandostatin. Right now, it seems like prayer is my only option, and I'm so tired of this fight and getting nowhere.
