My adult son has a long history of epilepsy but recently his generalized seizures have become more intense and frequent. He now experiences tonic & atonic both causing him to fall. It is so heart wrenching to see him suffer this way. We are currently trying new medication & looking into the keto diet & a corpus callosotomy is our last option.
I was wondering the side effects from surgery, effectiveness and recovery time. Anything you can share is great. Do they help with dropping seizures?
Hi everyone, I wanted your thoughts about what your would do if you were in my situation. I moved about a year ago to Central California and have to find a new neurologist. My existing one from Southern California is good but he is too far away now. The dilemma I'm facing is whether or not I should bother going to an Epilepsy Level 4 Center in the Bay Area. I've already had surgery twice, and probably wouldn't go for third one even if there was an opportunity in hopes of controlling my seizures… read more
Kevin I black out when I have mine and can’t talk don’t know if it’s similar but always been on meds no surgery My doc isn’t the best but life goes on. Just got my meds adjusted hope it works
I am new to this network and I see where 18 of 20276 people who include corpus callosotomy (CC) in their treatment. I would love to learn about anyone's experience with CC surgery. It has been recommended for my 14 yo son who has drug-resistant/refractory myoclonic astatic epilepsy (MAE or Doose Syndrome) since age 4. His seizures, which are generalized, have worsened significantly with the onset of puberty. The thought of major brain surgery and the potential side effects scare the heck out… read more
Age is not a factor. My son just had a corpus callosotomy and he's only 2 years old.
I got the majority of the "important" questions answered that i asked my docs. I just forgot to ask, how long it takes for the chunk of skull to heal that they cut? Do they use screws to hold it together? Can you feel the fact your skull has been cut or that there are screws(if there is screws)? If anyone has has a resection, do you know a rough estimate what the answers would be? I know i can always ask the day of surgery for more exact answers, i just kinda want to go into knowing ahead of… read more
Research on a reputable site like Mayo, Cleveland, John's Hopkins clinics. Put your questions on Google and choose what those sites offer. This will help you ask better questions as well
Also Gigi… read more
I don't know any ar the west Campus. I go down to the medical center and Dr Brandy Ma is great. Do not go to her associate though, Dr Amit Verma, I fired him years ago because he told me since he… read more
This is a very good question since there are many parts to the brain. They are as follows: corpus callosum, temporal lobe, frontal lobe, amygdala, hippocampus, parietal lobe, and occipital lobe. I… read more
Every neurologist I have seen tells me I need surgery to control my seizures. I have temporal lobe epilepsy that causes complex partial seizures. I've been through four different medications and still do not have control over the seizures.
I don't know if my condition is progressing or if the medication is causing me problems, but either way, I have noticed that I have forgotten a lot of things and my thought process is slower than it used to be. It's driving me nuts. I used to be the top of my… read more
I know the feeling....Except my neurologists over the years were not saying the surgery aspect. But I have been thru 9 medications now. I'm taking 2 medications now. But have dealt with 9 over the… read more
So I have a VNS and RNS...both don't help anyone have similarities
I worry about others. I am told by them don’t worry!