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Not a candidate for brain surgery - now what?
Sat, 02/14/2009 - 19:42Hi,
I recently underwent Phase II Video EEG monitoring (invasive - with strips) and the docs determined that I am not a safe candidate for surgery because my seizures (partial complex) are on both sides of my brain. I am very dissapointed because I feel that surgery was the most likely treatment to completely stop the seizures. I've tried acupuncture and probably 5 or 6 different meds, vitamin supplements, and a modified atkins diet but on average I still suffer a partial complex seizure about once a month. Compared to some others with epilepsy I consider myself lucky that I only have a single partial seizure each month but I still cannot drive and if there is a chance to stop these episodes completely I want to go for it.
I have a follow-up appointment with my neurologist in a week and we will discuss what the next step is for me. I've been reading about the VNS but am not sure that I want to undergo another invasive operation at this point. According to the statistics that I've read the VNS at best could cut the number of seizures I have in half - that would put my seizure rate at about one every 6 weeks which wouldn't really improve my quality of life considering how infrequently I have them now. I want to drive again and that will never happen as long as the seizures continue.
What other options do I have at this point with regards to finding a cure for my condition? I can and probably will try different meds but that is unlikely to stop my seizures completely.
What other alternative treatments/interventions are currently available? What new technologies might be available in 5 or 10 years down the line? I want to feel that some day my condition could be cured.
Thanks for your time.
Brian
Comments
Re: Not a candidate for brain surgery - now what?
Submitted by barn619 on Sun, 2009-02-15 - 01:21
Re: Not a candidate for brain surgery - now what?
Submitted by rikk on Sat, 2009-02-14 - 21:46
first hang in there, there is always hope. i have a vns, and it has helped me alot, not a cure, but did help. as far as invasive. the greatest risk is the anesthesia. i went to the hospital at 6am, surgery 8am, out of the hospital at 2pm. no problems for me other than a little surgical incision pain. tylenol fixed that. there is more information on vns. the company that made mine is called cyberonics. you can get the information at vnstherapy.com
What the next 5-10 years hold. you have to look back at all the changes for the last 10 years. seizure control and surgery techiques have gone throught the roof. quadrouple the changes over the last 5 years and you will have a idea of the level of hope. there are 15 new drugs that are going to be placed on the market soon. some of the information about that is on this site. there is always hope and you are not alone in this hugh pain the as...........that we all deal with. hope it helps. rikk
first hang in there, there is always hope. i have a vns, and it has helped me alot, not a cure, but did help. as far as invasive. the greatest risk is the anesthesia. i went to the hospital at 6am, surgery 8am, out of the hospital at 2pm. no problems for me other than a little surgical incision pain. tylenol fixed that. there is more information on vns. the company that made mine is called cyberonics. you can get the information at vnstherapy.com
What the next 5-10 years hold. you have to look back at all the changes for the last 10 years. seizure control and surgery techiques have gone throught the roof. quadrouple the changes over the last 5 years and you will have a idea of the level of hope. there are 15 new drugs that are going to be placed on the market soon. some of the information about that is on this site. there is always hope and you are not alone in this hugh pain the as...........that we all deal with. hope it helps. rikk
Re: Not a candidate for brain surgery - now what?
Submitted by seakats on Sat, 2009-02-14 - 20:44
I really dislike getting bad news like that from the doc. I, too, suffer from complex partials but am on monotherapy. I have gotten to the point where I'm having two to three a month. I don't have info an treatments or alternative therapies, but I wanted to give you thoughts of encouragement from one person to the other. Keep your hopes and dreams alive because one of these days there will be a cure! You're not alone in this fight and I hope that things turn around for you. My epileptologist wanted to put me on a drug study but since I want to try to become pregnant, I turned him down. He's on top of a lot of the newest research and if you want to contact him, here's his info: Dr. David Vossler/Washington Neuroscience Institute at Valley Medical Center/3915 Talbot Rd S, Suite 104/Renton, WA 98055/ www.waneuro.org/ 888.686.4964. I have quite a drive when I see him every month but it's worth it. He knows what he's doing and he's a really empathetic guy on top of being the Medical Director. I hope this info helps you and this support finds you...God bless!