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susan57

surgery corpus callosotomy

Our son Sean had surgery Jan 26, 2010. He is down syndrome. It has cut his seizures in half. He woke up after a week and was paralazyed, couldn't not speak, eat . He couldn't not breathe on his own for 2 weeks. We were in ICU for 28 days and still going through re-hab. He is walking, talking and eating now. His hair is not growing back. He is not the same person. Can someone out there that does not have developemental disability that has had the surgery help me and let me know what he must be feeling. He is not sleeping at night, he seems on edge, he's just not recovering like we had hoped. Or maybe we are expecting to much. After all the doctor said none of those things would happen. Just a 3 day hospital stay and he would be good as new!! RIGHT!! We are deperate and feel so sorry for him..He is not communicating to us what is going on or how he is feeling. He could before surgery. He funtions like a 13 year old. Please help...

Comments

Re: surgery corpus callosotomy

We are looking at this same surgery for our autistic, nonverbal son.  I'm wondering how your son is doing now three years post op?

Re: surgery corpus callosotomy

My 17 year old daughter had the complete surgery in 2010 and is now doing wonderfully! She has a developmental disability, pdd and has intractable seizures. Initially post- surgery, she presented with left side weakness (extreme), massive headaches and continued to have many partial seizures/day/week. After 6 months of physio, o.t. and daily activity (school), her body became stronger, her seizures decreased and she became clearer in thinking and in disposition. Now, 3 years later- she is a confident, extroverted teen. She continues to have challenges with her seizures- sometimes several times a week, howevre they are nowhere as severe as they were before, nor are the interictal spikes as apparent in her thinking process. The only thing she "lost" post- surgery was her reading skills. Though limited beforehand, she has a great deal of trouble decoding words. Surgery given her a new lease on life.

Re: surgery corpus callosotomy

Our son is doing much better. His seizures have gone from 50 to around 35 a month now. His drop seizures have stopped altogether. The only thing I can tell you is he has never returned to himself. His personality changed. Our son is a new person. He is not friendly, withdrawn, nervous, not as happy as he used to be. We wished we had never done the surgery. We have been in touch with another parent with an adult with disabilities and they feel the same way. We miss our son so much. It would have been better to just let God be in control. We made a mistake. That is just our story. There are more positive out comes than ours for sure. God Bless you and your child and I hope you make the right decision.

Re: surgery corpus callosotomy

I had the corpus callosotomy done on March 31, 2010.  I have no mental disabilities.  I had a mild stroke on the left side when I had my surgery.  I am alot better now.  As far as how I felt afterwards I mainly just had a headache.  I actually started having more seizures at first after mine.  Did he have the full one or the partial?  I know when they cut it completly there can be some bad reactions.  I only had the first 1/3 or 2/3 done.  The rest is still whole.  I did some reserch on having the whole procedure and there is a man that had it done and he has trouble talking and his left and right hemisheres do not work like they are supposed to.  I just know that all I really had was pain.  It wasnt horrible or anything but it was noticeable.

Re: surgery corpus callosotomy

This result is highly unusual and suggests that the surgery was improperly performed. Our daughter had the surgery twice and she still suffers from left-right syndrome and other complications. I have never read, during my research on this operation, of the outcome Sean is experiencing. You should speak with the doctor and then an attorney about potential malpractice. A new doctor to investigate what went wrong and an attorney to further look into it.