After I was initially diagnosed with my AVM, my local neurologist sent me out for an EEG to measure my brain waves. The radiologist reading came back and said basically I was having non-epileptic seizures due to the AVM. I was put on Keppra(levetiracetm). My AVM was about 2 inches on my right temporal lobe. In October 2012, I had a successful craniotomy where my AVM was obliterated. I am still on the Keppra. I don't know if i'll be on this med permanently, or for just a period of a couple years after surgery. Has anybody else been put on epilepsy meds for the seizures, and if yes, for how long, and are you still taking them? I am trying to find out what the determinants are for keeping a patient on the drug vs. taking them off.
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Yes, I was on Dilantin for many years, now on Tegretol for another 15 years or more. I am still taking them because the EEG says I am having occipital seizures still. They are small, mostly not noticeable by others. My family doctor is on me about liver enzymes that are raised, and this has been told to me by other doctors for a very long time. I am trying to get my med changed to something less liver toxic, if there is such a medicine. Just thought you may want to stay away from certain seizure meds which no one ever told me were bad news for livers.
beans
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I was taking phenobarbital and dilantin for 30+ years! I only had one seizure with my first AVM. I had a second AVM 4 years after my first. They never operated on me but my doctor did not want to change anything since I was doing well by taking meds. What you have to find out is want the meds are doing to your body. I have been going through a lot of back surgeries because the meds were taking calcium from my bones. They never knew about the side effects of the meds until it was to late. Hope this helps!
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I didn't realize a person could have more than one AVM. Mine was obliterated via a craniotomy. Wow, i'll have to look into the long term side effects of the drug I am on.
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I had an EEG done prior to surgery which stated I was having non-epeleptiform (sp?) seizures. I'm wondering if i'll have to have another EEG to see if seizures are still occurring.
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I discovered I had an AVM after a brain bleed in the right basal ganglia in August 2013. I’m fortunate to have never had seizures, but was put on levetiracetm for preventive measures. I had stereotactic radiosurgery in November 2013, so it’ll be a while before my AVM is history. I’m wondering the same thing - do I need to stay on levetiracetm indefinitely, or does the fact I never had any seizures change anything? I have an appt with a neurologist on Friday, and will ask this question. Any additional questions anyone can think of? Thanks!
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Hey Tim,
Your situation sounds a lot like my child’s. How are you doing?
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