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Surgery...How do you decide?

Tue, 09/16/2008 - 09:58

Topic: Surgery and Devices

I know opting for surgery is a personal decision, but I just want to explore other's experiences...

My son, 12yrs, has partial seizures, some Simple, some Complex. He's on two meds, both causing cognitive side effects, which of course makes learning difficult, plus makes things difficult for him socially. We've never gotten full control of his seizures... Sometimes they come daily, sometimes every two weeks. We're at the end of the Medications options... No more to try.

Do we just live with partial seizure control, or do we continue to strive for full control with Surgery. It seems so scary to me... I just want to do whats best for my son.

If you've had the surgery, please share your experience, OR if you've considered surgery, but opted against it.

Thank you so much, Val

Comments

Re: Surgery...How do you decide?

Submitted by ValNewLife on Tue, 2008-09-16 - 13:03

Becky, One more thing... How long do you have to wait to get off the seizure meds?

Re: Surgery...How do you decide?

Submitted by jderry on Tue, 2008-09-16 - 13:35

I went in for the big cut.Things did not go well.First I had to have a sensor grid put directly on my brain because they could'nt find exactly where my sez where coming from.This was to tell the team exactly if or where to cut to stop them.The word came back it was'nt worth the risk the only thing that could be done was to cut my brain in half.That might stop them from spreading once they start.So the grid was removed and I was closed up man it hurt. I got an infection because of all the wires running in and out of my skull the fever was so high I passed out for a day and a half I guess I could have died.I was sent home with a shunt in my arm because I had to give myself antibiotics all last summer.Of course I'm sorry I had it done but if I did'nt give it a try I'd be kicking my self in the buttt every time I had a sez.I'll never give in and I'll never up.This last time I got sick it was 6mths and 2 weeks between siezures but they where bad and I ended up in the ER.It is just so frustrating I do what I'm told. Been to so many different Doc's,take so many pills I rattle.

Re: Surgery...How do you decide?

Submitted by ValNewLife on Tue, 2008-09-16 - 13:54

I'm sorry things didn't work out with the surgery... Thank you so much for sharing your story. I hope your seizures come further and further apart, and that they lessen in severity. ~Val~

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