I would really like to explore surgery options for my son, he is more often than not status. We seen a specialist and had tests done for a surgery work up but they couldn't pin point one specific area of the brain that it was affecting, it was coming from several different parts of the brain all at once, I feel so helpless watching my son live the life he is living, not being able to reach milestones like other men his age, for example.. having a licence, moving out and finding a job, having a… read more
It depends on the results of the testing. Normally they would do a SEEG, then from there they would do a WADA test, then there are a few more tests to try to work out if the surgery could affect anything.
Before considering surgery, testing must be done to find out what seizures he has, pinpoint where the seizures are coming from. He has to accept what he has and learn how to live with it. There might be things that he may not be able to do such as driving and other things. But he should find ways to not let seizures stop him from living life. He may have to adjust to doing things in a different way.
A few things different for me -
BEFORE the surgery:
- 1 day of seizures at the end of
EVERY month, no matter what
- if I missed meds 1 day, a seizure
would hit me 1 or 2 days later
- Memory hit hard immediately
after I started off with 100mg of
Tegretol. Memory with everything
suddenly tougher, with study at
school, especially.(But if something happened in the ‘80s, I can remember it like yesterday)
- Less than 6 hours sleep led to a
day of seizures the following day
(Like college - finals week was
seizure week for me)
AFTER surgery:
- felt the BEST I have since starting
meds immediately afterwards
- seizures are a rarity
- if med missed once, not a
problem
- I sleep less often, like last night
- side effects hit a bit harder,
especially my memory
For 3 years after the surgery, I cut down from 11 to 5 pills a day. That felt like an eternity. If considering surgery, you may want to talk about the chances of taking medication afterwards, as your sons side effects sound similar to mine. My personal surgery was on my left temporal lobe. And it’s amazing how great I felt 2 weeks later
Hi! Yes it is possible. I had brain surgery when I was very little with uncontrolled seizures, and I was having hundreds a day. I would suggest speaking to his doctors about it and see what they have to say.
I had the surgery. And 2 weeks later I felt fantastic. But that wasn’t only because of the surgery, that was because I had gone 4 straight weeks without taking medication. So I was shocked when the doctor told me that I still had epilepsy and would have to restart taking meds to battle such. For me personally, I have far less seizures. But the medication side effects have gone up and hit harder, that’s for sure. I must say, the side effects your son faces do sound very similar to mine. For me personally, I would wake up and know if I would be having a day with a few seizures. And I’d immediately smile. Though it wasn’t going to be a good day, I knew I wouldn’t have to get out of bed and spend the day dealing with the side effects.