Any parents who's children have had brain surgury
First off let me tell you a little bit about myself. I have son who is 7 at 17mths he had a stroke that left him with total left hemisphere brain damage. Since then we have dealt with seizures on a daily basis. With medication we have gone from 60 down to 10. however, we've tried tons of medicitions and this is the best we can do. The medicines make him tired and the seizures we do have totally mess him up. At his neurology appt yesterday they really want to remove the either the left half of his brain or if they can find the part that is doing the seizures remove that part. I wanted to see if any parent has had a child with this type of problem and has had the brain surgury. We know the risk and the side effects we are already dealing with. I just would some stories. Thanks
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Permalink Reply by Shelley Oldham on -
My son has had seizures every day since he was 3 weeks old - he is 6yrs old now. We have had him evaluated 3 times for a hemispherectomy (at the doctors requests). Every time we wondered if we were crazy to do it if they came back and said it would stop the seizures. We decided the 1st time that we would go along with it - anything to stop the awful seizures. Unfortunately they could never be more than 50% sure that it would help him more than it would hurt him so we have never done it. However, we would do it in a heartbeat if it would help! (On a side note, he did have a Corpus Callosotomy in Oct 2005. This was a minor surgery compared to the hemispherectomy and although it didn't help at all, we gave it a shot). Good Luck in whatever you decide!
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Permalink Reply by Jenn on
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yeah i heard the corpus callosotomy isn't really successful. Our biggest thing is we already have the brain damage, so we're not hurting him more, he already has the side effects of the surgury, so i don't know we start the testing process next week, so i'll let you know what ends up happening! Wish us luck. We were just hoping to find a family similiar in situation, i suppose, as they say every person has a different situation and no two situations are alike :(
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Permalink Reply by Shelley Oldham on
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Where would he have the surgery? The only reason we didn't do it with Reid is because both sides are actively producing seizures. One about 75% and the other 25-30%. If we take out the worst half, we are still left with a bad half. Although it would reduce his seizures, he would still have them. It's a pretty big risk for only 75/25 - the doctors agreed as well. He has an average of 12 per day. He usually starts with a tonic seizure, then it goes to a cluster of infantile spasms. The tonics started at 3 weeks old and the Infantile spasms at 5 months old. We have dealt with them every day and have learned to live life with them. Unfortunately it has hampered his development, but even removing the worst half wouldn't allow for progression. So for now, we sit idle and pray that brain transplants will be available soon (lol).
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