Hi all. I haven't been around in a while. Been really busy working. I had my craniotomy 2 years ago today. For the first year things went really well. The seizures had almost stopped all together, I was feeling great. I thought I had beaten this. Then about 6 months ago I started getting more frequent seizures. The continue to last longer and happen more often. I lost my insurance right after the surgery and stopped all meds and treatment. I have been back to my neurologist, he sees me no matter what. They have been trying several different meds to stop the seizures, but no luck. I just can't seem to see this any other way than that this thing in my head is still there and getting closer and closer to bursting. I was just wondering if anyone has had these kind of things happen and just looking for anyone's input. Thanks for taking the time to read this.
Dave
Hi Dave...Where you on an anti-seizure med after your craniontomy? I was started on the med immediately after my cran...I tried to cut down on my med 2 years after my surgery and had a grand mal seizure. So now, I will never stop taking the med. Different anti-seizure meds work for different people. I've been on Keppra since I had my surgery in 2007. Hang in there and hopefully they will find the best med for you very soon!
David,
so sorry to hear about your insurance situation. Nothing makes me more mad than health insurance. I won't go off on a tangent about it, but suffice to say I sympathize with you.
I had one (and only) grand mal 5 years after surgery. I'll be on lamotrigine for the rest of my life, and it has worked without any problems. If I recall correctly, my neurologist told me that keppra is an affordable, reliable anti-seziure medication.
Finally, I'm certainly not a doctor, but my understanding I am still at risk of seizing due to brain damage from the avm that WAS there & surgery. Again, I'm not a doctor, but I don't think seizures mean that you still have a risk of bleeding.
Just 2 cents,
-Chad
Yes, I was on meds after the surgery, but I weened myself off after a couple of months. I needed to work and couldn't focus on the meds. I am realizing now that I need to to do what the Dr.s say and keep on with the meds. I am on Tegratol now, but I seem to have more seizures than ever before. I hope that they find something soon. Thanks for yous help.
Thanks for responding. Luckily the only grand mall was during my surgery and I don't remember any of it. They actually induced me into a coma for a day to keep me from having more. I have taken Keppra before, but it made me to foggy. I guess I'll have to just accept that and know that I might not be able to work like I do. About the seizure causing a bleed, The way the Dr. explained it to me was that the vein was swelling and putting pressure on my brain therefore causing the seizure. He said that the more it swelled like that the more it weakened the wall of the vein and eventually it would pop. I hope you are right though. Thanks again for taking the time to reply.
Dave
Hi David. There is a sub-group there you may wish to join…
http://www.avmsurvivors.org/group/avm-with-seizures-epilepsy