Seizures and surgery: views on removing part of brain to stop them?

Hi! I had my right temperol lobe removed in 2011 because of an abnormality. Have a VNS as well, which doesnt help but would like to think it does. I am still having seizures. I havent had a gran mal seizure since that surgery but I feel like my seizures are slowly becoming more frequent and am scared and worried that I will have a gran mal seizure anytime. Im having complex partials and absence seizures now. I also downloaded a seizure app on my phone so that when I go see my Neuro I can show her when and how often. It helps her see how many im having. On 2 seizure meds at the highest dose and my VNS settings are set pretty high as well. Good luck to you and your granddaughter!!

@crstyday40 - I'd like you to meet and hear about the stories of members like @mmaryemc, who has a granddaughter for whom doctors are considering surgery to stop her seizures; @jakedduck1, who has had over 10,000 seizures and not had surgery for his epilepsy; @ndapanda, whose daughter had a modified hemispherectomy; @robertjr, who has shied away from brain surgery; and @patrassi, whose son had a hemispherectomy and now may have another surgery.

You mentioned having your right temporal lobe removed in 2011. Do you feel that you would select this surgery again? Recommend it to others?

I would recommend it, for it has helped with me not having a gran mal since my surgery. My only problem now is my memory is getting worse with every complex partial i have, which has been daily with sometimes having up to 6 seizures. I dont know if i mentioned before that i have another abnormality on my hippocampus, which i was told cannot be removed. So im always wondering if it can get worse or spread to other parts of my brain, especially since ive been having them every single day now. But, I also fear what if they get bad again and I start having gran mal seizures. So scared its just a matter of time. I dont regret having the surgery at all. Good luck to anybody thinking about doing the surgery!!!

@crstyday40

Sorry to hear about your multiple Focal Impaired seizures. Did your seizures change from Tonic Clonic to Focals after your surgery? How many were you having before surgery. I believe Focal Impaired seizures may be more hazardous than Tonic Clonic as far as accidents are concerned. At least when someone has a Tonic Clonic seizure they go down where they are and the dangers are usually less provided your not engaging in a dangerous activity. (Bathing, swimming, biking, driving etc.) Have you considered using the Response Neurostimulation system for your seizures? You might ask your doctor about drug-gene testing also called pharmacogenomics to find the most effective AED.
Hoping your seizures settle down,
Jake

Sorry to hear about your grandaughter. My son had laser ablation surgery in July 2018. Although time will tell whether the surgery has been a success, so far so good. I believe it is a good thing your grandaughter can be a candidate for a surgery. Is she still in a coma?

@jakedduck1 Thank you! Before my surgery i was having 20-40 complex partial seizures daily. And 1 or 2 gran mal a year. About 3 months after my surgery I started having the partials and now absence about twice a month, then just over the years they have slowly become more frequent. Even with me doing the medical marijuana and on 2 seizure meds they are just happening daily again. I have wondered about the RNS and would consider getting it. I havent talked to my neurologist about it yet. I feel its worth a try. Especially since the medical marijuana isnt helping at all!!! Have been reading all about it and at this point Im desperate for help! My husband thinks since im not using the bathroom in myself that i should be thankful for the seizures im having now and how they are not nothing like before. And im very thankful but at the same time the auras and the ones im having now are still scary and my anxiety is through the roof!!! I definitely dont drive, was working before all this but im a stay at home mom now. I had asked a question on drugs.com about the medical marijuana not helping my seizures and if anybody else was using it and it not helping and my question was deleted. I feel like it was deleted because it seems that everybody is all about the medical marijuana helping this and helping that and hopefully it does for alot of people but i think its a joke and people are just making tons of money off of it!! Thays just my opinion of course!

Hi. My son was diagnosed with epilepsy at the age of 9. We went through an extremely difficult time at Boston Children’s Hospital. The were literally scratching their heads. Their only course of action was to keep trying different drug cocktails. His side effects were to most of the meds were horrendous. We finally found help at the Mayo Clinic in Rochester, MN. They knew right away what to do. My son had brain surgery at the age of 10. They removed a section of his brain they said was about the size of his fist. They made no guarantee that he would be seizure free, but it’s been 8 years and he’s been seizure free since the surgery and is doing well.

Hi! My son also had surgery at Mayo in February 2017 and today we are here at Rochester Saint Mary’s Hospital and he is having another video eeg monitoring. It’s not easy at all, but we have to decide what is going to be his next step, although he continues having spells. Maybe another surgery will be necessary. We are really afraid!
But we will continue hoping he will be fine...

@boston2mayo
Welcome!!!
I’m glad his surgery was a success. My parents refused to allow surgery and I’m so grateful. It’s a gamble. It might have worked then again???
What type seizures did he have? What part was removed? Is he off medication?
Health & Happiness & Happy New Year,
Jake

Thanks Jake. Part of the left frontal lobe was removed. My son was at high risk of SUDEP and didn’t respond to medication. We’re convinced if we continued care in Boston that my son would be severely affected if not worse. The doctors at Mayo were completely baffled by what the BCH doctors were doing. It was a very difficult decision to have surgery. Yes it was a gamble but we were fighting for his life. He is off medication.