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 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.
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
It is a fact that I will not hear back ever again if I contact the builders of this site or whoever they have running them. However, either by reading my suggestions or someone else who had the exact same suggestions or questions relayed to those who run this site have made modifications that are much more useful.
However, I am curious if they will provide a link to My Team (for all the sites) help site either to the opening screen or for the ambassadors to share with the new members.
Right I had same question.
My son has Dravet Syndrome a form of Epilepsy
He has significant cognitive delays. Almost 9 years ago he had a corpus callosum. He was struggling with learning. He went to a regular school. He was learning to write his name fairly well, learning both letters and numbers. About 6 years ago we had to move again in regular school. He no longer can write his name, doesn't know his alphabet or numbers any longer
This school year he is in a specialized school. ( He is struggling, they say he is… read more
I never had Corpus Callosum , but I have hade similar experience
I was alway in a lower learning grade level than the grade that I was in. From elementary all the way through high school, I was in… read more
Stress is a very big trigger for seizures. When I was in college during finals I noticed the level of stress increased all over the campus even with the people that did not have epilepsy. When… read more
Has anyone ever experienced a non-epileptic seizure ? I'm not certain that I have these because I haven't been diagnosed. I've done research though on how different types of stress can be a trigger for a seizure. Things like anxiety, depression, or other mental issues. If anyone has ever experienced these, any imput that you have is greatly appreciated. I think I'm going to start by doing just some general therapies like meditation or yoga, I'm sure there are other things that can be used as… read more
I had psychogenic seizures out of the blue. My Neurologist asked me are you under stress. At that time my EEG was normal. I was under stress. He told me a problem he was having in his family. He said… read more
I smoked a bowl of "Curevana Delta 8 THC Flower COOKIES N' CREAM" and nothing has been the same since. I can't keep track of time, I'm not sure of the date, I seemed to have pissed off my neighbors something awful. Even Cops, Nurses, and Doctors seemed like they'd rather wipe my head off my shoulders. I always thought I was a pretty nice guy...
I also suffer from dysgenesis corpus callosum. Can affect my epilepsy triggers...or is it a warning sign, or it it another form of seizure?
I have that in my eyes. I've never noticed it as a warning. I think mine are caused by stress.