I am interested to hear from anyone who has had this radiation therapy and any side effects they may have experienced. I had my treatment in Feb this year and I have started to get a twitchy eye - and I get pains in my head everynow and then where my head feels hot (kinda like when you have an angio) …anyway… let me know!
has your AVM gone?
Yes I often wished I didn’t know but now I am glad I did as I caught it (well lets hope) before anything else happened, and even if I haven’t at least I have reassessed my priorities in life - although I am still at work when i want to be somewhere else but i figure i need some normality right now - and waiting for my first check up. As for if I was in your position, I understand where you are coming from - its a lot to deal with, as long as you are not constantly wondering - if i do have another…
Most likely the pains is the radiation killing cells. I still get them when I never really had them before the radiosurgery.
You just have to keep thinking that whenever you get any kind of weird reaction, slight pains, seizures, it’s usually the effects of radiation.
Whenever I had numerous seizure that would not go away, as much as it freaked me out and I had NO idea what was going on, later I released that it was the radiation doing it’s thing. After my latest hospitalization for them, that’s when I was told about the major reduction of the avm size and the likelihood that it may have gone.
I do not know if I am abnormal. But I had five to seven angiograms and mri’s with die. And I feel perfectly normal. I do not really get any headaches. It is wierd. I have been shot with radiation three times. Once in Boston, once in Gainesville, and the other time at my hometown New Orleans, LA. Well I am still here thank goodness and thank my parents and my doctors. But really I do not have any problems with the tests they give I. Type back if you have any other questions. I do have a slight memory loss but nothing major.
I had gamma-knife 14 months ago and had nausea and numbness beginning at month 12. I have more details about those side effects in my blog entries called “Numbness and Vomiting”.
I don’t get the head pains, but twitchiness started about 2 months after my GK (in late October) and continues today. I’ve talked with my neurosurgeon (who did the GK), neurologist and they agree it is due to blood flow moving as the GK procedure begins to close down some of the targeted vessels. I usually get some brief warning – like yesterday when I was able towuickly pull off the road and have my passenger take over the driving.
I hate to admit it still scares me when my eye or mouth/chin starts to twitch, even though I know why and not to worry.
But check with your neurosurgeon to be sure it’s a side effect from your particular procedure (especially the location of your AVM) and not something to follow up with. Someone a few weeks back had a bad procedure and was having symptoms from brain necrosis.
Good luck with your recovery.
I had gamma knife in Jan of this year, I posted a discussion called “strange sensations from gamma site”–I get weird pains in my head, and at first, when I touched my forehead, I could feel the sensation of my fingertips on the top of my head(!) I have one spot on my scalp that is always incredibly itchy, like I have insects biting me (no lice. I check 10 times a day SOmetimes quick, sharp, but not intensely painful, pain in gamma area. My face twitches, but I have unrelated neurological problems, so I am not sure if it is from that or the gamma.
I do not know yet I will find out tomorrow, April 10, 2008. Now your name is Jaszi? What a unique name.
NO IT WILL BE THERE FOREVER ACCORDING TO MY NEUROSURGEON. WHAT THE RADIATION HAD DONE WAS STRENGTHENED THE VESSELS. SO I GUESS I WILL HAVE THE BIRTHMARK FOREVER LIKE I AM SUPPOSE TOO. BUT HE SAID THAT IT HASN’T BLED IN FIVE YEARS SO LETS HOPE IT STAYS LIKE THAT. WHAT A TRIP? I THOUGHT IT WAS SUPPOSE TO DISAPEAR? BUT I WAS WRONG. SO WRITE WHEN YOU GET THE CHANCE TOO. IS YOUR AVM STILL THERE IN YOU.
I HAVE NO SIDE EFFECTS FROM MY RADIATION NOR MY TESTS, MY ANGIOGRAMS AND MY MRI’S, I GUESS I AM LUCKY.
OMG, I have the same side effects, its been three month and I get tingles and pain in parts of my head that I have never had before, even the itchey head, drives me nuts and quick sharp pain that lasts a few seconds but comes most everyday, my email is ■■■■■■■■■■■■■■■■■■■■■■, write anytime Caroline, I also had gamma surgery
Jazz, I had radio surgery, the halo and whole thing, I Had it done three months ago yesterday, some things ive noticed were and are head pain dull pains most everyday to my left side of my head, yesterday started just behind my ear pains and on the top of my head pains, My husband thinks its because the avm may be shutting down, I can only hope , I do get twitching in my rite eye as well, My AVM is 32mm and is on my left parietal lobe, no bleeds ever, thank god, The doc said there is or was alot of shunting and I guess thats why I hear heartbeat sounds in my ear. I can on lu hope the radiation is doing its job… Caroline
I have twitching in my left eye - my aneurysms are on the right, but i thought my AVM was on the left - hmm - sometimes the informationi s so sketchy… well will find out more in August. Lets hope the radiation is doing its job… ! thanks all
So true lets hope I know, I have went to go get my MRI with dye and nothing has changed about my 5cm in the center of my brain. Ah well My dr told me it may of hit and made it stronger??? ah well just at work right now eating lunch.
Jazz- I have twitching everyday- whole body, sometimes just legs, sometimes arms. Its a big annoyance. I take clonazepam before bed so that I can stop the twitches and fall asleep. I have not had the heat sensation, though. Probably depends on where your avm was & what cells were affected by the radiation.
My head never feels hot. My whole body is warm when I get the angiogram. And I do not have any side effects so far. It is keeping me on this earth another day.
NO I WENT TO GET TESTED ABOUT A MONTH AND A HALF AGO AND THE DR. STILL SEES THE DARN THING.
No it is still in there. But my neurosurgeon tells me they may of hit it. Meaning bye strengthening it. Who know’s? The only one that knows I have not met yet.
Yes that is my feelings also. I am fortunate to be on this lovely earth another day. eeehhhh!!! But I am at work right or left now. So ah well life goes on for me…