Anyone had this surgery? - Epilepsy Message Board

brent's mom · 07-30-2007, 11:55 PM

Hi! I haven't posted here for quite a while, we're just back from a week's worth of 24-hour a day video taping and other tests for our son at St. Louis Children's Hospital. (Where they are saints, by the way!).

Anyway, they caught 6 on tape, and all the doctors involved with all the tests agree there is a lesion on his occipital lobe in the back lower left of his brain, probably been there since birth as part of his VATERS syndrome birth defects. They think it interferes with his brain's glucose uptake, I believe is how they put it. They tell us that they very rarely have a chance to offer any of their patients this good of a chance to be seizure free with surgery. They want to just lightly scrape off the top of this lesion and hopefully not take off too much or too little. The major risk from this is he will probably lose his extreme right sided peripheral vision.

Brent says he wants the surgery, although he is pretty scared about it. We think the up to 85% odds of being seizure-free are pretty good, but are wondering if anyone else has had this done and what was the outcome? Are brain surgeries just a terrible thing to enter into? We have pretty much tried everything we can find that might help Brent; low carb diet, gluten and celiac disease tests, diabetes and low-blood sugar tests, thyroid test, cranio-manipulation, DMG, L-Theanine, Native Remedies Epi-Still, Omega 3's and B-6, Body Balance, and the list goes on and on.

We feel like this is our only hope since drugs haven't worked to stop his seizures and are just wanting a little moral support or prayers or warnings to stop or whatever anyone wants to say about this plan!

Thanks for listening!
Brent's Mom

Sk8ter Girl 23 · 08-12-2007, 11:05 PM

Hi
I have had brain surgury once before and am waiting to have two more. The two I'm waiting for sounds somewhat like your sons.

Sk8ter Girl 23 · 08-15-2007, 08:46 PM

Hi Bret's Mom,
I am getting ready to have surgery and just got a date to day, September 17,
2007 at 7:30. So I have a lot of mixed emotions on am I doing the right thing or am I being selfish. I am in the opposite from you I have a four year old at home. It's hard knowing what the right thing to do is. My mom went through making that decision for me already when I was 10. It's hard being a mom and knowing what the right thing is to do. Hang in there and I will keep you and Bret in our prayers.

Travis from MN · 08-16-2007, 07:46 AM

All I can relate is what the Dr told us when I had brain surgery in 81 as a child.

The Dr's told (my parents) that the brain adapts better to younger age patients. It did this in my case when I had the brain tumor removed in the left hemisphear by the speech and fine motor regions of the brain. Those areas (he said) would most likely transfer to the other hemisphear and I'd have very little limitations.

This ended up being true in my case. At more mature ages, after the brain has finished developing, there are more risks one might face a person can only assume.

--Travis