So I am going to have my Stereotactic radiosurgery in 2 weeks (the 16th). I have allready had one embolization 2 weeks ago. The outcome so fare from this is, that I have lost some of my vision in the left site of both eyes (I still hope this will return back to normal). The plan was to do more embolizations, but the doc. told me that she would not be able to close my AVM completely, so next step is stereotactic radiosurgery.
Yesterday I was getting all the scans done and the mask. Only thing missing now is the angiogram this Thursday, and the final planning.
I would like to hear from others that have tryed stereotactic radiosurgery on AVM´s in the occipital lobe. What did you experience from this? I'm afraid to lose more of my vision, but also getting any other side effects :-(
Hi Allan, it's been 3.5 years since my GK. I had an AVM in my right occipital lobe as well, very small though. There was some scaring from the treatment, so I have a small blind spot. I also now experience visual auras, more specifically scintillating scotoma. Keep me posted on your progress! Best of luck, sending prayers for a successful treatment and recovery :)
Thanks for the reply and the prayers send my way :-) I hope so much that the treatment wont effect my vision more than now. But I have had a hard time finding the good "storys" about people having GK in the occipital lobe :-(
Hi. I was treated with radiation 2x for occipital avm, and was left with radio necrosis. I Also have these visual auras constantly. I call them flashes or episodes, They appear as colored flashing lights, geometric shapes that grow and become like static. Sometimes accompanied by a headache. Occasionally this will be an aura for a seizure, but usually just resolve.
I was curious what form your visual symptoms take. do they occur daily ? Are they accompanied by headaches ?
Hey josh. Thanks for your reply :-)The thing with my vision now is that i am missing some on bouth eyes - left vision feild. It is like missing a piece from a puzzle game. Things are just not there. When a car i running past, all of a sudden it disappears for a second, and then comes back. It is the same when i walk in the street. People walking towards me in my left side, they disappears and then comes back. This is all the time, but I still hope that my vision will return in the future :-) From time to time I also have this flashing blink accompanied by headaches. 2 times a week. occasionally I also experience a feeling of someone putting a nail in my brain - very intense and concentrated to spots in my forehead- over my eyes, or the back of my head.
The day of my GK i will start preventive treatment with steroids. I hope this will help me to avoid some of the side effects....
Is i correct that you got the necrosis after the second treatment?
I totally understand the visual field deficit, because I share that with you. For me its a part of my lower left.
Hopefully the central area was spared, I still had enough central acuity to drive, as long as I don’t have seizures.
I noticed that being in crowds will be tiresome, due to having to look around more often to avoid people/ objects. Lol.
But yes I personally didn’t have any adverse effects at the first radiation treatment. But after the 2nd I did notice my visual field worsen then. And that was when the necrosis began.
Those headaches sound nasty. But it’s really good to hear that they are going ahead and going to give steroids to prevent side effects. Now I’m still on them as well and they want to wean me off, which I agree with but it had to be slow because that’s just how it works. Besides I’m doing that other treatment now which is a whole other story, ill be done with that by mid March.
I hope that I can keep my driving license!!! For now I am not allowed to drive before the doc. have tested me... I have to say that i am starting to feel a little nervous of the treatment tomorrow. I think the side effects are pretty scary.., but then again I don´t see any other option than to take the treatment. I guess thats the same dilemma all of us with AVM´s are having....? I hope that the new treatment will help you Josh. I can only imagine how tiresome it is to deal with the side effects you have!!
They appear as colored flashing lights, geometric shapes that grow and become like static. Sometimes accompanied by a headache. Occasionally this will be an aura for a seizure, but usually just resolve.