hi everyone
just want to know if anyone had problem with the gamma knife treatment for the avm after about 20 years or more. just want to know whats coming thanks leandra
Hi, Leandra, I think no one answered because not many have had gamma so long ago. Also, there is such a variety of experiences post-gamma, that no one else's experience is in any way predictive of yours.
Oh sorry I haven’t getting back to you. Thank you for responding. I was actually the first person to go though the gamma knife in Pittsburg at that time. I think the6 did it on one person before me. I mean I was about 5 years old. I do have seizsures like 20 years after I have had that surgery and I was wondering if that was from that or what. Thank you for talking to me
Oh my gosh! I had mine done in Pittsburg too. Did you have Dr. Lunsford? That's who I had.
It's only been 6 years for me. So I can't really answer your question. I did have a few drs tell me that after you get past the 4 year mark. That's pretty much how you are going to be. They all say that the gamma knife is only alive in your body for 3 years. I think they say 4 years to cover there but (ha ha). I hope you know that it is possible for new avms to form. From what I hear it's not common but, it could happen.
You may be the trailblazer for the gamma knife group. You are probably thinking…oh joy…oh rapture over that possibility. Bottom line…you are an acquired brain injury survivor.
Any TBI/ABI person can be prone to seizures. sigh
Just too many variables to predict the future. Avoid alcohol and flashing lights…get plenty of rest and eat regularly. Oh and keep us posted too. Otherwise we will worry about you!
hugs
Hi,
I have three cerebral AVM’s, one was removed 3 weeks ago. The other two will be treated with stereotactic radiation (very similar to gamma knife).
However, 15 1/2 years ago, I had surgery and post gamma knife for a benign brain tumor that could not be completely excised.
I was recovering well from the surgery, but had an awful time starting about 4-5 months after the gamma knife (which was done 3 months post-surgery). I had terrible headaches that I never had before and the worst fatigue. I tried, but could not go back to work and ended up on disability. I finally recovered about two years later.
Now, It’s like deja vu - I am recovering extremely well from brain surgery only three weeks ago, but have to have radiation again and I am so dreading it.
15 yrs ago, I told my radiation doctors the symptoms I was having and they just brushed them off and told me I was fine and lucky that I didn’t have brain cancer like so many of their patients. I AM lucky I didn’t have cancer, but my life was drastically changed.
After one year, there were no more follow ups with these doctors. How can they get any data about long-term problems or recovery without follow ups?
Although, I have heard that a lot of people having gamma-knife type therapy do very well with no problems afterwards, so it must be dependent on the individual, what part of the brain is affected and how much radiation is actually used.
I wish you well in your healing.