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Seizures after AVM gamma knife
Hi everyone--
Question for you all: anyone have increased seizures or seizure symptoms after gamma knife? My husband was doing great on Zonegran for two and a half years, then had gamma knife in Dec., suffered three seizures right after that in the next few days. Docs increased his level from 400 mg to 500 mg. Still had symptoms, where his left hand would shake, which is his warning sign that a seizure is about to take place, but nothing came of it thank God. Doc increased his levels to 600 mg, the highest they want to go on that brand of med.
Yesterday he had another episode of his hand/arm twitching pretty bad but again did not manifest into a full blown seizure. Doc is out of the office till Thurs. so we are doing the waiting game. UGH. The doc had said he didn't want him going higher than 600mg on Zonegran. We will have to switch meds or do a combo. Oh yeah, and his blood levels are high for Zonegran but not crazy out of whack.
Anyone out there experience anything like this, where their seizure meds just didn't cut it anymore after gamma knife?? I can only hope the AVM is shrinking and maybe screwing up his brain's wiring for the time being?? Any insights? We are so afraid he will have another seizure. It's been so tense. He just wants to get back to normal. Also, I am afraid of switching meds, what if the new one doesn't work or it takes awhile to build up the levels?
I am also frustrated with this doctor. He is always on vacation when we need him and the on-call doctors can't do a d*mn thing for him because they don't know his history. We will be switching neurologists after this, that's for sure. Meanwhile, we wait till Thursday and hope nothing happens??!
Thanks for all your comments,
Michelle
Question for you all: anyone have increased seizures or seizure symptoms after gamma knife? My husband was doing great on Zonegran for two and a half years, then had gamma knife in Dec., suffered three seizures right after that in the next few days. Docs increased his level from 400 mg to 500 mg. Still had symptoms, where his left hand would shake, which is his warning sign that a seizure is about to take place, but nothing came of it thank God. Doc increased his levels to 600 mg, the highest they want to go on that brand of med.
Yesterday he had another episode of his hand/arm twitching pretty bad but again did not manifest into a full blown seizure. Doc is out of the office till Thurs. so we are doing the waiting game. UGH. The doc had said he didn't want him going higher than 600mg on Zonegran. We will have to switch meds or do a combo. Oh yeah, and his blood levels are high for Zonegran but not crazy out of whack.
Anyone out there experience anything like this, where their seizure meds just didn't cut it anymore after gamma knife?? I can only hope the AVM is shrinking and maybe screwing up his brain's wiring for the time being?? Any insights? We are so afraid he will have another seizure. It's been so tense. He just wants to get back to normal. Also, I am afraid of switching meds, what if the new one doesn't work or it takes awhile to build up the levels?
I am also frustrated with this doctor. He is always on vacation when we need him and the on-call doctors can't do a d*mn thing for him because they don't know his history. We will be switching neurologists after this, that's for sure. Meanwhile, we wait till Thursday and hope nothing happens??!
Thanks for all your comments,
Michelle
Comment
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Comment by Reggie on March 9, 2010 at 5:15pm - Thanks so much for your response, Joy. So, there was increased swelling around your son's AVM, but the AVM itself is shrinking? That is great news! My husband has had countless MRIs but not in the last two months or so since this has been happening. I will suggest he tell his doctor. So frustrating isn't it? Especially when we can do nothing to help/stop it. Yes, maybe they will add on another med for him. I know this is all extremely delicate and switching meds isn't the easy thing it sounds like. He is also frustrated he can't drive. He works about 45 minutes a way and he has been hitching rides with coworkers. But as I'm sure your son knows, this just isn't the same as having the freedom to drive yourself! Thanks for your input, and good luck with everything :)
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Comment by Joy on March 9, 2010 at 5:06pm -
Hi Michelle. My son did experience something like what your husband is going thru BUT not until 1 year after his Gamma procedure and he had/has extensive brain swelling. For him, it started that his right leg would go paralysed accompanied by the twitching which later developed into a full seizure, but he was awake. My son had 2 MRI's which first showed the brain swelling and then showed it had gotten worse. With him, they first increased his Dilantin and then added another seizure med- Clobazam.
I would think that your husband shouldn't switch meds at this point since I think that has to be done very slowly and carefully but maybe they will add another one like they did for my son to control what is happening and why?
BUT I think your husband NEEDS AN MRI or an EEG, ASAP!! correct??? How horrible that he has to wait to get some help with all of this!! My son is extremely scared of having another seizure too. And he lost his licence AGAIN when this all started, which really upset him...but onward we go.
My thoughts are with you.
One big positive is that the Gamma is working really well on my son's AVM...a light at the end of the tunnel.
© 2010 Created by Ben Munoz.
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