Did you have an AVM and then had brain surgery to remove the AVM?
Yes, I did. The surgery removed the AVM partially. The remainder of the AVM was embolized approx. 10 years later.
Yes. Due to size and location of my AVM, surgery and embolization were not an option. Neither was leaving it untreated. I had gamma on June 22nd and started having seizures the next day. My brains rewiring 
You are doing well with no complications?
Louisa, How does the keppra make you feel?
Stephanie, My husband had a large seizure in January and his AVM disappeared in August. The Dr. seemed to think that when the seizure occurred in January that was the beginning of the AVM closing off on its. own. So is your AVM gone? How many gamma knife treatments did you have?
To 368, so you have been dealing with this for 10 years? How does that Vimpat make you feel? Did it make you feel any different then the Keppra? Are you completely cured now?
My AVM is still here. I have an 80% chance it will be gone in three years. Gamma is one massive dose of radiation ( 201 proton beams over a period of hours). If my AVM is still here in 3 years it will need to be treated again. I believe that the siezures are a product of the radiation working and my brain is rewiring. I have heard of pulmonary AVMās disappearing on their own but never one in the brain. Thatās fantastic.
I have only been on keppra for a few days but I donāt appear to have any side effects except I seem to be extra thirsty???
All things considered I would say yes. My right side is considerably weaker and more vulnerable than my left side.
Not really. I had no idea that the original surgery only partially removed the AVM. I thought the complete AVM was obliterated.
According to my spouse Iām much more alert now Iām taking Vimpat. Yes, I do feel different.
I recently saw a neurosurgeon. According the angiogram images the AVM is totally obliterated. The AVM is perhaps totally removed, but the AVMās āleft-oversā (epilepsy, a weaker right side, etc.) will always be there. I donāt know if I would call it ācompletely curedā.
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You said epilepsy, I take it you have had a lot of seizures. Have you had any since your AVM was completely gone. The reason why I am asking is my husbands AVM is completely gone and he is being weaned off the anti-seizure medicine. He is down to 1/4 dosage now. I just wondered if you have any seizures now that your AVM is gone? When I think of epilepsy I think of multiple seizure disorder without a known physical cause. To me an AVM is a physical malfunction which can be fixed.
Thanks for all your information. You didnāt start having seizures till after the Gamma Knife procedure? If you donāt mind me asking what Keppra dosage are you on and when was your last seizure? That is interesting that a pulmonary AVM can disappear on its own and now my husbands brain AVM. I just wonder how that happens and what might make it happen? Maybe more people would be treated medically different.
Started on a low dose 250 mg twice a day. Last seizure was last night but it was different than previously. Lost the use of my right hand temporarily and felt very odd twice in just over an hour. I was due for my evening dose so I took it and fell asleep.
I never had any major problems with my AVM until after gamma.
Thatās good, that your husband looks like heāll be seizure-free. Thereās really no telling who will and who wonāt be. The AVM steals blood from other parts of the brain while it exists, so that can cause damage that lasts, or a bleed can cause lasting damage, even the treatment can cause lasting damage. Thereās no real cure for an AVMāit can be blocked off or cut out, but any damage it created is there to stay. Some of the problems it causes are temporaryāit can cause seizures as it grows by pressing on other brain tissue, and this can be relieved by removing or reducing the size of the AVM, for example. So some people have seizures before treatment and none after, and some people remain at risk of seizures.
The official definition of epilepsy is 2 or more seizures, with no short-term, curable cause (like a fever or a temporary brain swelling). It doesnāt take a ālotā of seizures to have epilepsyāall it means is having a reasonable chance of more seizures. Some people with epilepsy have never even had a seizureāthey just have seizure spikes in their brain activity, which would lead to seizures without medication. People sometimes try to avoid the label of āepilepsy,ā because people with epilepsy have been treated very badly in history, but itās just a word.
Thanks 368 for all the information it was very valuable.
Thanks 368 for all the information it was very valuable.
My son had his craniotomy on the 30th sept 11 on the 9th of October he had a grand mal seizure he is now back in hospital while they sort out his anti seizure meds
they think i may have, but they donāt know. i took medicine to prevent them for months though.
I think I may of had some kind of seizure today. I started feeling spaced out and then started to see flashing lights. It was strange, kind of a colorful C shape that was strobeing in my right eye for about 10 mins. I currently am having swelling from my Gama-knife 12 month ago and being treated with steroids so Iām hoping it just due to thatā¦
I donāt want to have to start Keppra again it was horrible when they put me on it at diagnosis 14 month ago for a precaution only. I stopped taking it about 8 month ago because it was making me tired and lazy etc. Felt much better after quitting.