Is surgery really successful for those with refractory complex partial?

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My name is Casey and I’ve had refractory seizure for 25 years now. They are complex partial and from what is known most originate from the left side of my brain. I met with my epilepsy specialist at UPENN today after being tested to see if I was a surgery candidate. Amongst the many things he told which include another EMU stay, he said unless they can specifically pinpoint where my seizures originate, the surgery would have less than a 30% success rate. Would it even be worth it to pursue one of the surgical options if it came to that? I’m on 4 medications, cant work fulltime, sleep way too much cuz well meds and have gotten to a point where they cant adjust my meds really anymore. Ive been on almost every one they could put me on. By the way, I’m only 27. Thoughts?

Comments

Did doctor specify what kind

Submitted by birdman on Fri, 2018-04-13 - 20:13

Did doctor specify what kind of surgery he recommends? I don't know the percentages on success rates for the various surgeries, but I do know there are several options including laser ablation, resection, Vagus Nerve Stimulation (VNS), and Responsive Nerve Stimulation (RNS). I've had resection of tissue from my right temporal lobe and I had VNS for five years. It is disappointing that I still don't have complete seizure control, but I do think these treatments have had an effect in making them not as severe as they used to be. In the video, Seized; Inside the Mystery of Epilepsy one young lady described her treatment as "a process; a journey." It's a tough call and getting a second opinion may only make it more confusing which course to take. If they have trouble pinpointing the focus ask about VNS.

Casey, I have yet to try RNS.

Submitted by birdman on Sat, 2018-04-14 - 11:20

Casey, I have yet to try RNS. Like you I do not want to take multiple meds (especially when there is a low probability that they will be 100% effective. Since 2005 or so I have not tried any new meds as I have waited for RNS approval and for my clinic to start RNS treatment.. After 25 years of treatment at one clinic I've switched to another that is interested in helping me get the RNS system implanted. And like you I am also asking how effective this may be for me. Of course if we visit Neuropace.com we hear only from patients who have benefited from RNS. I haven't heard too many complaints. I've been reading and thinking a lot about it and it makes the most sense.RNS is reversible whereas resection or laser ablation results in permanent loss of tissue.RNS can be programmed to respond to different levels of excess brainwave activity. I and many other patients experience increased anxiety and mood problems when we get too much seizure control from medication. I'm hoping that using RNS will allow a certain level of benign seizure activity to happen so that I don't go crazy like I do on some meds.Many Neuropace patients claim that RNS has helped their memory. Maybe; maybe not. It would be great as I know I have fallen short of everyone else especially on visual memory.And one interesting idea I picked up from a Neuropace representative was that having the implant helps with managing drug therapy. Right now our doctors depend upon us to honestly and accurately report all seizures. Having the RNS device implanted means there is continuous recording of even the most subtle spikes that could result in seizures. As I understand with the RNS implant the doctor can monitor how well a medication is working even if we do not experience a seizure. This of course could result in more treatment from the kind of doctor who wants to take no chances when he or she sees even the mildest spikes still occurring. But I am hoping that RNS will make it possible to be on less medication since the treatment will probably do at least some seizure control, and because the doctor will be able to always measure which meds are having no effect.One problem I will have in getting the RNS implanted to my left temporal lobe is that when I am in for EEG monitoring my seizures tend to erupt from the right temporal lobe even though we know there is a left temporal lobe focus. I have an appointment scheduled on April 25 and we'll discuss the issue. I'm wondering if it may be reasonable to first implant RNS leads to the right temporal lobe and then, if complex partials still erupt from my left temporal lobe, place leads in left later.

Casey, I have yet to try RNS.  Like you I do not want to take multiple meds (especially when there is a low probability that they will be 100% effective.  Since 2005 or so I have not tried any new meds as I have waited for RNS approval and for my clinic to start RNS treatment..  After 25 years of treatment at one clinic I've switched to another that is interested in helping me get the RNS system implanted.  And like you I am also asking how effective this may be for me.  Of course if we visit Neuropace.com we hear only from patients who have benefited from RNS.  I haven't heard too many complaints.  I've been reading and thinking a lot about it and it makes the most sense.RNS is reversible whereas resection or laser ablation results in permanent loss of tissue.RNS can be programmed to respond to different levels of excess brainwave activity.  I and many other patients experience increased anxiety and mood problems when we get too much seizure control from medication.  I'm hoping that using RNS will allow a certain level of benign seizure activity to happen so that I don't go crazy like I do on some meds.Many Neuropace patients claim that RNS has helped their memory.  Maybe; maybe not.  It would be great as I know I have fallen short of everyone else especially on visual memory.And one interesting idea I picked up from a Neuropace representative was that having the implant helps with managing drug therapy.  Right now our doctors depend upon us to honestly and accurately report all seizures.  Having the RNS device implanted means there is continuous recording of even the most subtle spikes that could result in seizures.  As I understand with the RNS implant the doctor can monitor how well a medication is working even if we do not experience a seizure.  This of course could result in more treatment from the kind of doctor who wants to take no chances when he or she sees even the mildest spikes still occurring.  But I am hoping that RNS will make it possible to be on less medication since the treatment will probably do at least some seizure control, and because the doctor will be able to always measure which meds are having no effect.One problem I will have in getting the RNS implanted to my left temporal lobe is that when I am in for EEG monitoring my seizures tend to erupt from the right temporal lobe even though we know there is a left temporal lobe focus.  I have an appointment scheduled on April 25 and we'll discuss the issue.  I'm wondering if it may be reasonable to first implant RNS leads to the right temporal lobe and then, if complex partials still erupt from my left temporal lobe, place leads in left later.

Casey, I have yet to try RNS. Like you I do not want to take multiple meds (especially when there is a low probability that they will be 100% effective. Since 2005 or so I have not tried any new meds as I have waited for RNS approval and for my clinic to start RNS treatment.. After 25 years of treatment at one clinic I've switched to another that is interested in helping me get the RNS system implanted. And like you I am also asking how effective this may be for me. Of course if we visit Neuropace.com we hear only from patients who have benefited from RNS. I haven't heard too many complaints. I've been reading and thinking a lot about it and it makes the most sense.RNS is reversible whereas resection or laser ablation results in permanent loss of tissue.RNS can be programmed to respond to different levels of excess brainwave activity. I and many other patients experience increased anxiety and mood problems when we get too much seizure control from medication. I'm hoping that using RNS will allow a certain level of benign seizure activity to happen so that I don't go crazy like I do on some meds.Many Neuropace patients claim that RNS has helped their memory. Maybe; maybe not. It would be great as I know I have fallen short of everyone else especially on visual memory.And one interesting idea I picked up from a Neuropace representative was that having the implant helps with managing drug therapy. Right now our doctors depend upon us to honestly and accurately report all seizures. Having the RNS device implanted means there is continuous recording of even the most subtle spikes that could result in seizures. As I understand with the RNS implant the doctor can monitor how well a medication is working even if we do not experience a seizure. This of course could result in more treatment from the kind of doctor who wants to take no chances when he or she sees even the mildest spikes still occurring. But I am hoping that RNS will make it possible to be on less medication since the treatment will probably do at least some seizure control, and because the doctor will be able to always measure which meds are having no effect.One problem I will have in getting the RNS implanted to my left temporal lobe is that when I am in for EEG monitoring my seizures tend to erupt from the right temporal lobe even though we know there is a left temporal lobe focus. I have an appointment scheduled on April 25 and we'll discuss the issue. I'm wondering if it may be reasonable to first implant RNS leads to the right temporal lobe and then, if complex partials still erupt from my left temporal lobe, place leads in left later.

Casey,Surgery CAN be

Submitted by RTL on Sun, 2018-04-15 - 21:26

Casey,Surgery CAN be successful, which is not to say it WILL be successful. I don't think I'd want to do it with the odds you've been given but maybe further testing will make those odds look better.I've had surgery and have detailed my thoughts and experiences here:https://drive.google.com/file/d/0B4W1q98dcPYKT0hfSTI2N3ZuYjA/viewKevin