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rose25

advice on surgery decision

My one year old daughter is on her second medication and the seizures are still not controlled.  Our doctor wants to do surgery to remove the abnormal area of her brain that is causing the seizures, but I am really nervous about this.  She has no developmental delays and I know there is no guarantee the surgery will even stop the seizures.  Please help!

Comments

Re: advice on surgery decision

Many people have to try dozens of medications before they find the right one.  Others have what is called Medically Refractory Epilepsy, like me.  Medications themselves do no control these seizures.  I had surgery twice in 2003 at the age of 14, both on the right temporal lobe to stop my seizures.  I went from having hundreds of seizures a day to 10-20 small ones a day.  Research has shown that the earlier surgery is done, the better the results are most of the time.  My surgery was done 6 years after my TBI and diagnosis, and after trying 13 different medicines. 

Whether or not to have surgery is a hard choice to make.  For me, it was based on the number of seizures I had a day, how they impacted my life as a child, plus my parents helping.  My doctor told us it was the only way we would even be able to come close to controlling my seizures.  They are still not controlled, but are much, much better than what they were.  I no longer have grand mals or complex partials every day.  I have simple partials (auras) daily, but they do not impact my life nearly as much as the first two do. 

Re: advice on surgery decision

Thank you for your comment, I guess we have alot to think about.

Re: advice on surgery decision

Thank you for your comment, I guess we have alot to think about.

Re: advice on surgery decision

I had szs 36 years before opting for surgery.  I tried 4 different meds, none worked, I had about 50 szs a year and finally threw in the towel and had surgery.  I have been seizure-free since, which is now over 5 years.  The meds will have side effects & if they're not working, don't stay on them.  Talk to the docs about surgery and start getting the info.  Make sure you talk to neurosurgeons who specialize in the surgery for epilespy and are pros.  I found Dr. Doyle at NYU-Langone Comprehensive Epilepsy Center in NY and highly recommend him.  Dr. Devinsky was my epileptologist.