@santosha
Shabbat Shalom!
Unfortunately for my entire life I'll never be off medication for seizures. It's normal after surgery to have that happen especially since I kept on having seizures before hand due to the edema (which for me to easily understand that term is like having a bruise on the brain) etc. A lot of information. Anyway he wants us to hold off on the mri until the 2nd week of March. Which is a protocol after surgery. To make sure everything is okay and in hopes that another (since I had seizure afterwards) didn't form another malformation since this is a vascular issue. My neurologist wanted me to have an MRI this coming week. As far as seizures goes it turns out I’ve been having them & never really realized. He called it a certain medical term. In other wards I don’t actually go into it but certain things happens. Which makes sense now since I moved in GA. The genetic mutation doesn't just happen to all of my side in the family. In the dna mutation they don't quite understand why in the family from generation to generation doesn't get it and then it'll appear on 1 or 2 etc BUT they've also found out after doing genetics how a parent or sibling will have something happen like my brother & I & get tested have that same mutation and yet go all there lives with nothing happening.
There was a medicine that a facility tried for Cavernous malformations but took it off the market because it didn't help. There is something else but waiting to be sure it'll work. So hopefully in 5 years it'll be available but for now all they can do is once it ruptures to remove it. For me I have many all over my brain. He doesn't see a reason to have an EEG done only because of not having a seizure. The results are only going to come back normal but he doesn't want to come in between the neurologist decision on that just to hold off on the MRI a little longer. As far as switching medication to another he understands my concern in having another seizure. Until the doctor gets me to the dosage level I need with the new one. Since I was having trouble with the other one. (It began today so I’m a bit nervous about the drop of 500mg twice a day from 1500mg twice a day to adding Lacosamide 50mg x2 a day from my one med to the other.) But this other one is top of the line medication. I have a follow up with the neurologist in 5 1/2 weeks and the neurosurgeon will view the MRI and let me know how that turned out. Other than that I’ve been getting better though before we switched to this new medication. I still can’t handle too much noise though or too much interaction with others again due to my ears being sensitive to everything but I’ve been getting around better though. I’m hoping in a couple months I’ll back to normal because my daughter has a recital for singing a solo coming up in that time. My husband said perhaps take ear plugs for the rest of the recital since it’s instruments from each child. But I have time and perhaps things will be better by that time.