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Not a candidate for brain surgery - now what?
Sun, 02/15/2009 - 01:02Hi,
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 milw.girl on Mon, 2009-03-30 - 12:00
Re: Not a candidate for brain surgery - now what?
Submitted by Susan Barker on Wed, 2009-05-20 - 12:43
My adult son received a VNS at New York Cornell Weill Medical Center about 10 years ago -it was shortly after they became available . He was referred by his Doc at Columbia because they were not yet using the VNS but I understand that most comprehensive Epilepsy Centers now are fully capable wrt the VNS placement and programming
He also had seizures originatiing from both temperal lobes ,often in clusters that required an ER visit
Having tried the Ketogenic diet, Modifed Atkins, Biofeedback ( which appeared to induce partial seziures in his case) and countless AEDs I would say the VNS placement is actualy a benign procedure by comparison and worthwhile . Repeated seizures can impact cognition , memory, mood. Reducing them is a good thing
This surgery is minimally invasive and my observation is that it was not as unpleasant as a week on video EEG
My adult son received a VNS at New York Cornell Weill Medical Center about 10 years ago -it was shortly after they became available . He was referred by his Doc at Columbia because they were not yet using the VNS but I understand that most comprehensive Epilepsy Centers now are fully capable wrt the VNS placement and programming
He also had seizures originatiing from both temperal lobes ,often in clusters that required an ER visit
Having tried the Ketogenic diet, Modifed Atkins, Biofeedback ( which appeared to induce partial seziures in his case) and countless AEDs I would say the VNS placement is actualy a benign procedure by comparison and worthwhile . Repeated seizures can impact cognition , memory, mood. Reducing them is a good thing
This surgery is minimally invasive and my observation is that it was not as unpleasant as a week on video EEG
Re: Not a candidate for brain surgery - now what?
Submitted by mommy2kyra on Fri, 2009-02-27 - 02:54
Hi Brian,
I am so sorry that the seizure activity is occuring in both hemispheres. That does limit possibilities, unfortunately. VNS is a possibility for you. Many people do continue to have seizures, but most seizures are limited to auras, by them flicking the switch when the aura occurs. I don't know if this still limits ability to drive though.
The reality is that a significant percentage of people with E do continue to have seizures after their surgery. The seizures may not be as strong, or come as often, but they still come. Medications are still required for a large proportion of those after surgery to maintain most control over seizures. It is a hard reality to face when you get there - I know.
I was seizure-free for about 6 months after my surgery (month 5-almost 1 yr anniversary). I slipped on the ice and fell onto the left side of my head in a parking lot. Intracranial hemorrhage and traumatic brain injury occured as the plate in my head shifted on impact. Seizures came back. I'm now pretty much back where I was prior to surgery - except my case is much more complex. The big negative, for me, is the cognitive effects of the surgery and TBI.
Trust me, I definitely feel for you. I understand exactly how disappointed - devastated - you must be. I would have been too! But, we have to learn how to accept the true limits that we have. The limits can be worked around relatively easily (physically), but it's not (emotionally) fair. It totally sucks to have your life go this way. We just have to hope and pray that more effective treatments will become available to those with treatment resistant E.
I wish you the very best! ((Hugs))
~Heather~
*refractory seizure surgery on left temporal lobe 03/06* TBI 3/07 * diagnosed with refractory partial epilepsy 2/09*
Hi Brian,
I am so sorry that the seizure activity is occuring in both hemispheres. That does limit possibilities, unfortunately. VNS is a possibility for you. Many people do continue to have seizures, but most seizures are limited to auras, by them flicking the switch when the aura occurs. I don't know if this still limits ability to drive though.
The reality is that a significant percentage of people with E do continue to have seizures after their surgery. The seizures may not be as strong, or come as often, but they still come. Medications are still required for a large proportion of those after surgery to maintain most control over seizures. It is a hard reality to face when you get there - I know.
I was seizure-free for about 6 months after my surgery (month 5-almost 1 yr anniversary). I slipped on the ice and fell onto the left side of my head in a parking lot. Intracranial hemorrhage and traumatic brain injury occured as the plate in my head shifted on impact. Seizures came back. I'm now pretty much back where I was prior to surgery - except my case is much more complex. The big negative, for me, is the cognitive effects of the surgery and TBI.
Trust me, I definitely feel for you. I understand exactly how disappointed - devastated - you must be. I would have been too! But, we have to learn how to accept the true limits that we have. The limits can be worked around relatively easily (physically), but it's not (emotionally) fair. It totally sucks to have your life go this way. We just have to hope and pray that more effective treatments will become available to those with treatment resistant E.
I wish you the very best! ((Hugs))
~Heather~
*refractory seizure surgery on left temporal lobe 03/06* TBI 3/07 * diagnosed with refractory partial epilepsy 2/09*