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geoffmckim

Peripheral Vision Loss and Other Side Effects of Occipital Lobe Surgery

Topic: 

I'd like to know if anyone out there can speak from experience to the side effects of occipital lobe surgery for epilepsy. In particular, did you experience peripheral vision loss? If so, what does it look like/feel like? We are considering this option for our son, and would very much appreciate hearing from others who have had this surgery.

Comments

Re: Side Effects of Occipital Lobe Surgery

No experience yet.  Our son is 15 and has had abscence seizures since 9 years of age.  The Dr.'s say his originate in the Left Occipital area of his brain, yet there is nothing concrete that the MRI's have been able to reveal.   Our son's seizures cluster starting towards the end of springtime when the temperatures rise.  Fall and wintertime he is very stable and controlled.  Has your son exhibited any increase in seizures during the warmer months of the year?   We would like to try the Visualase surgery if he is a good canidate and they can locate where his originate from.

Periph Vision Loss & Side Effects of Occipital Lobe Surgery

I am curious about others' response on this too. I had an internal EEG back in 2006 and the doctors found that my focal point is in my occipital lobe so we didn't proceed with the surgery.

Re: Peripheral Vision Loss and Effects of Occipital Lobe Surgery

My Son is 19, and just had surgery in this area of his brain. His vision loss is as he describes it, a small slit in his upper vision field, in his right eye, he still has his peripheral vision. He doesn't even think about it now, and his vision actually improved a little after surgery.

Over the years my son has had several surgical evaluations by different neurologists, all came back the same, "He wasn't a surgery candidate because his seizure focal point was in his IQ and vision center. As the years passed by it became clear that my son didn't have a life, his seizures were uncontrolled with medications, and he also had a VNS implant. Nothing helped!

We found a great neurologist who was willing to listen, agreed this was no way to live, gave us the same warnings as the other doctors had, but felt surgery was at lest worth a try, thinking they may be able to decrease my son's seizures. No real hope was given to a seizure free outcome.

Well, as I write you today, I'm glad to report my son has been seizure free since 4/16/2013! Our neurologist is shocked as well as the surgeon! Once they implanted the electrodes, and mapped my son's seizures precisely, they began to see a whole different scenario develop.

Having Occipital Lobe epilepsy isn't an easy one to diagnose, as you well now. Many of my son's seizures had gone undetected with the scalp EEG placement. They were to quick, and the discharge was going towards his face. When his seizures spread to his temporal lobe, they could see these on the scalp EEG.

I will say, the technology today is much better than it was even 10 years ago. And I was always hoping it would advance quickly, to help my son and others like him. Don't get me wrong, the brain surgery was scary, but the idea that my son's vision might be permanently damaged was almost more than I could stand.

The group of doctors we worked with would discuss their findings with us daily while in the hospital doing the mapping. They will not proceed with anything you our your child wouldn't be comfortable with, often telling us to sleep on it, and make a decision tomorrow.

I hope my son's story helps you with a very difficult decision and time in your life. 

Re: Peripheral Vision Loss and Effects of Occipital Lobe Surgery

Wow! Thank you for your comments. Sounds like a great outcome for your son.
Our son stopped seizing for the time being (none since September & no changes with his meds). His seem to be temperature related (startup each year May/June and then taper off late summer). Wish we could live in Alaska April thru September to see if a cooler climate for the summer months would affect him for the better!

Re: Peripheral Vision Loss and Effects of Occipital Lobe Surgery

Oh that is good news. Maybe you are actually getting things under control. With the new medications available now, control seizures in a completely different way, your son has a better chance for seizure control in the future, and hopefully you will not have to go through surgery. Because it is a lot to go through.

Oddly enough tempature change was also a seizure tigger for my son. His was year round, like going from air conditioning to the heat and humidity out doors, or going outside in the winter. He was so sensitive to a change in tempature, that it could be as simple as a little breeze, and he would have a seizure.

I wish your son the best, continued seizure control.

Kayne