My husband had repeat post gk in 2010. We are now 2 1/2 years post gk and my husband has gotten progressively worse. He started having dizziness and loss of balance, he now has rubral tremors on the left side and is unable to use his arm or even walk. He is in a wheel chair. It was determined that a stroke occurred due to the last gk surgery and caused all of these problems on the left side. we are trying parkinson medications to stop the tremors, but nothing has worked, causes worse side effets. Has anyone had this happen and do you have any good results from medications? Thank you very much.
Hi Jan,
I'm sorry this is happening. My problems aren't as severe as your husbands but, I too got worst starting 2 years after my GK. 2 1/2 years later (after the GK), I became disabled. I now have tremors, involuntary body movements, cervical dystonia. The list goes on.
The only thing I can suggest is, keep trying different meds until you find one that works. I'm on a low dose of tegretol, 200mg once a day. That's all I can take. We discovered that I get a bad reaction if I take a higher dose.
I think the trick is - getting the dose right and the timing when to take it down. That usually comes from trial and error.
Ben
Has your husband been checked for necrosis? Have you inquired about hyperbaric oxygen therapy?
Ben-when yours grew why did the doctors decide not to embolize it to make it smaller so less radiation was needed? They told me there is no way they would use radiation on it over 3.5 cm. Do you regret not treating it when you were younger?
Robin
Ksucat,
No, I don't. . . Mine was and still is inoperable. Radiation was/is my only option. When I first decided not have it treated (in 1991). I believe I made the right decision. I did go for the GK in 2007. I do not recommend others should wait as long I did. It can be very dangerous. I have a simple life - I've never been married and I have no kids. Because of that - I never had to worry about someone else, if something were to happen to me.
I'm now left with two avms. . . One is 11mm and the other one is 17mm. I was offered GK for these too. Since they are also inoperable because of there location.
Ben
Ksucat,
Also... mine as at 5 cm when I finally had it treated (with GK). I don't know why your drs. are telling you that . . That doesn't make any sense to me(?)
He told me where it is located: RIGHT PARIETAL LOBE and the size 4 cm was too big of a risk for damage to surrounding brain tissue. The risk to treat was greater than leaving it alone. I meet with another doctor Wednesday to discus embolization.