Seizures

I have a cerebral avm, and am to have my 1st embo in a few weeks. I have been having a lot of seizures for the past year. From what I’m reading, most people don’t have a lot of seizures pryor to a burst. Does this mean that I am very close to having a burst??? Any info would help. It’s so hard to find out anything about this.

Hi, David. While I have never seen any information that specifically states that increased seizure activity is a sign that a vessel is likely to rupture, I suppose anything is possible. I had frequent Simple Partial seizures for several months before ever having my AVM diagnosed or before I was even able to put a name to the odd symptoms that I was feeling. After some tests and some steroid treatment to reduce the swelling in my brain, the activity seemed to stop.

The seizure activity came back a couple of years later and was every bit as bad; maybe even a bit worse. After seeing a different group of surgeons, I was placed on anti-seizure medications and scheduled for my craniotomy.

All that being said, the worst seizure I have had took place about 5 months AFTER my craniotomy. My neurosurgeon says it was due to residual swelling from the surgery. My thought in your situation is that it could be from a pending rupture of the vessel, or it could just be from swelling of the vessel pushing on the nerves.

After I had the first seizure, that’s when they found a cavernous angioma & hemangioma. They couldn’t rule out an AVM. They did see that I had bled 2 wks prior to the seizure. I did have another burst years later, but that was probably due to the fact I was taking NO sz drugs for 6 months prior. After the first surgery (just to patch the bleed) it was 2-3 years later of frequent sz’rs & more so the migraines when I finally bitched & had all of them removed. No bleed after the 1st surgery, but unfortunatly the sz’rs are here to stay. Maybe you need to try a different sz drug. Alot of new ones are out since the early 90’s when I was in your position.

david,
i have never found any reseach stating that siezure activity is related to an increased risk of a bleed…although when saying that i had never had a siezure until my avm was diagnoised at the age of 27 and they continued to get worse and i was told by surgeons that the vessels had dialated and were on the verge of a major bleed…but not sure if it was because of the siezure activity or because of the several aurysms

Hey Jake, Thanks a lot. That seems just like my situation, except for the fact that because of the location of my avm {leaning against my motor cortex} they have to do a couple of embos first them maybe Gamma Knife to shrink the size in order to do the craniotomy. Again, thankls for the info. I guess I just have to be patient and let the expertts do their majic.

Jake M said:

Hi, David. While I have never seen any information that specifically states that increased seizure activity is a sign that a vessel is likely to rupture, I suppose anything is possible. I had frequent Simple Partial seizures for several months before ever having my AVM diagnosed or before I was even able to put a name to the odd symptoms that I was feeling. After some tests and some steroid treatment to reduce the swelling in my brain, the activity seemed to stop.

The seizure activity came back a couple of years later and was every bit as bad; maybe even a bit worse. After seeing a different group of surgeons, I was placed on anti-seizure medications and scheduled for my craniotomy.

All that being said, the worst seizure I have had took place about 5 months AFTER my craniotomy. My neurosurgeon says it was due to residual swelling from the surgery. My thought in your situation is that it could be from a pending rupture of the vessel, or it could just be from swelling of the vessel pushing on the nerves.

I’m on Dilantin now and it decreases the frequency of the seizures, the do still happen. Though mildly, Mainly muscle twitching on my left side. There is pooling of blood { that they first thought was another avm} , Is this a sign of a prior bleed or just seeping? Thanks for your help

cursed said:

After I had the first seizure, that’s when they found a cavernous angioma & hemangioma. They couldn’t rule out an AVM. They did see that I had bled 2 wks prior to the seizure. I did have another burst years later, but that was probably due to the fact I was taking NO sz drugs for 6 months prior. After the first surgery (just to patch the bleed) it was 2-3 years later of frequent sz’rs & more so the migraines when I finally bitched & had all of them removed. No bleed after the 1st surgery, but unfortunatly the sz’rs are here to stay. Maybe you need to try a different sz drug. Alot of new ones are out since the early 90’s when I was in your position.

Thanks Alicia. I am just worried to death every day, waiting to have all the procedures done to {hopefully} get this thing out of my head. They say that the seizures are caused from the veins swelling and putting preasure against my motor cortex. Like a bubble on a tire. To me, that just means that a bleed is coming, we just hope the embos, gamma knife, then crniotomy will get rid of it first. They say that it will be a 2 or 3 year process. I guess the race is on. Again thanks for your insight.

Alicia said:

david,
i have never found any reseach stating that siezure activity is related to an increased risk of a bleed…although when saying that i had never had a siezure until my avm was diagnoised at the age of 27 and they continued to get worse and i was told by surgeons that the vessels had dialated and were on the verge of a major bleed…but not sure if it was because of the siezure activity or because of the several aurysms

My daughter has been having partial seizures for most of her life. As it turns out, it’s most likely due to the AVM, even though we didn’t find the AVM until she was 17. So I don’t think it is necessarily a sign of an eminent bleed. But it is certainly something you should discuss with your neurologist.

I wish you all the best,
Kati

David- if the “pooling of blood” is fresh, I would say it is seeping, but if it’s dried it’s a prior leak. Your Neuro. should know that & I would “assume” if they are not digging in now to stop it from seeping, it’s dried. All my Neuro’s have said dilantin is the worst drug, but it’s always the first one that is given. It’s because the levels of the drug can fluctuate. That’s when the blood work comes in handy. It never hurts to get some ativan or valium if things get really out of whack too. I currently have valium when the twitching (aura) begins & stops it rather quickly.

David - i hope your surgery went well and no bleed occurred. If so, you are indeed blessed! Stay well. Ruth

Ruth,

I'm sorry that I haven't given an update lately. I had the surgery on 5-29-10. I was out of the hospital in 4 days. I went back to work in 2 months. I am so blessed. I have had a few light trembles over the last year, but other than that, it's like this nightmare never happened. The Dr.s are even amazed. Thank you for checking in with me. I hope all is well with you.

Way to go David!

Ron, KS