Is anyone recovering from brain surgery related to hemangioblastoma?
I consider myself lucky, but I’m disabled. I’m 64 and had the surgery on 7/3/18. The surgeon just knew it was cancer, but it turned out that I’m in the 1% in which it was a mass of blood cells and not heritary. It was a walnut sized tumor and the surgeon, who I can’t say enough good about, said he had never had a 9 hour surgery that took 2 units of blood. It was between my cerebellum and spinal column and he had to take at least 20% of my cerebellum to cauterize the blood vessels. I have full use of my left side, but my right side (I am right handed) is similar to a stroke. It is weak, but everything else is intact including the rest of my brain. It has slowly rerouted and I drive carefully locally (I live in Tampa) but I have a long way to go. I do go to the gym now and it is really good for me. So far I lost 20 of the 25 lbs I needed to, and everything is two handed which is good. I feel almost normal when I work out. My balance is better, and I walk almost straight now, but I put myself at 65-70%. Things are better, but the operative word is slowly. I used to use a walker, I couldn’t go up stairs, things tasted “hot” and I was sorta dizzy all the time. Now it’s much better. The one thing that hasn’t gotten much better is my ability to write with my right hand. It still tremors and I don’t know whether to go left handed (this is typed with my left hand) or keep trying with my right hand.
Is there anyone out there who had similar issues? I’d love to talk. It’s really hard to find someone in the US who has had the same thing I’ve had, but I would like to meet someone who’s had similar issues. I’m ok and the surgeon says I’ll live as long as before, but I accept my disability a lot better than my wife.