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Right frontal and temporal lobe resection due to cortical dysplasia

My 3 year old has cortical dysplasia.  She began having seizures at 5 mos old.  Over the past 3 years she has had periods of seizure control with medication, the seizures would begin again, followed by regiment of increasing her medication dose until she was out of the therapeutic range and then moving on to a new med.  She is now on her 3rd medication; she has been seizure free since Aug, but we have learned through long-term monitoring that she is still having a significant number of sub-clinical or EEG (can't be seen by the naked eye) seizures throughout the day.  We have done all of the tests (MRI, PET, 3-T MRI, SPECT, etc.) and are now at the point of meeting with the surgeon to discuss the risks/benefits associated with surgery.  We would be looking at a right frontal and right temporal resection.

The docs are encouraged by her young age and ability to recover from the surgery.  Currently, she is doing well developmentally, but her docs are convinced that the longer her brain "learns to seize" that eventually, she will not be able to keep up developmentally.  Obviously, we are very nervous and absolutely want to do the right thing for her in the long-run.

Any advice, comments, personal stories...positive or negative would be greatly appreciated!

Thanks in advance!

Comments

Your 3 year old daughter

Hello Wendym06.

Mam, I apologize for just now coming across your inquiry here. I see where you posted it back in December of 2010. Here it is March 17th, 2011 and this is the first and only reply to you (well, it's the only one I see anyway).

To get to the point(s), well here ya go: I'm a 43 year old male from South Carolina. I've experienced the exact same surgery that, at the time of your initial post, has been proposed to your daughter.  Mam, I’ve even went through ALL the tests (MRI, PET, 3-T MRI, SPECT, etc.) as your daughter has.  

I experienced that surgery back in 2007. It initiated on July 13th, 2007 (i.e. that pads were inserted) and was finalized (i.e. after several seizures were recorded) on August 3rd, 2007.

When the final surgery took place, the brain cells that were "out of place" (i.e. Cortical Dysplasia) were removed. The area that included those cells was approximately the size of an oval/egg shaped quarter and approximately 1/8” deep. In short, it took me approximately 12 months to get back to being 95% of my previous self. Within the next 6 months, I became 99% of my pre-seizure, pre-surgery, self. 

Mam, I experienced that surgery at the Medical College of Georgia in Augusta, Ga. I owe those folks my life. I have had no major seizures since then, and those that did occur were due to my failure to take my medication for several days in a row. Further, as of June 2010, I now take no medication and I have experienced NO SEIZURES since.

In closing, by all means would I consider it a privilege to further discuss my experiences with you. If in any way I could assist you and/or your daughter, well again I’d consider it a privilege in doing so. By the same token, please by no means feel as if you "must" reply.  In fact, feel free to contact or reply at your convenience, and only if you feel comfortable.

If by chance your daughter has already been through the surgery, my thoughts and prayers are with her and her mother.

Hope all is well,

JBaker