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Is surgery really successful for those with refractory complex partial?

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

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.

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

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

I has right temporal-lobe

I has right temporal-lobe resection 10/31/17 and no more seizures as of 4/20/18 -- meet w neuro late June, hopefully to see about driving. So I don't know. -- John

I have (or had) refractory

I have (or had) refractory CPs and a resection back in 2008.  I would say that my seizures significantly reduced after surgery, but did not go away.  With a change in my diet to go along with the surgery, I had only been having minor seizures (auras) hat would only last at max about 10 seconds.  The low side is that I am maxxed out on 3 different drugs and haven't been able to decreased dosages.  January, I went in for another VEEG to try and figure out why I am still having these seizures.  I have now gone through the EEG, VEEG, PET scan and MEG so that we can start planning for an SEEG and possibly another resection after all that.  They think that it is all in the same area, just deeper in my brain.  That is where the SEEG comes into play. They believe that this will better pin point where the focal point of the seizures are coming from.  They took me off of my KEPPRA back in January (3,000mg daily) and put me on Briviact (200mg daily) and I have not had any issues since.  I would like to keep it that way and if another surgery,,,,,, or two will help out.  Then that's what I'll do.Later,Racer

I read a book named EPILEPSY

I read a book named EPILEPSY SURGERY: A Guide for Patients and Families.  It's a great book.  It might give you more insight about whether or not to have surgery.

Well hopefully all is well

Well hopefully all is well with everyone.  After all my tests they are planning for my SEEG surgery, possibly for mid-July.  Hopefully they get the information they need from this one.  My neuro-surgeon did touch on possibly going with RNS as well after they get the results from the SEEG.  One thing that I forgot to mention before also was that with my issue, part of my right hipocampus had deteriorated from early in my years. That was when someone on epilepsyfoundation.com suggested the whole dietary thing.  I actually did gain better control with that.  Hopefully this all works and this SEEG surgery and fallowing resection surgery finally gets it all in line with where I should be, either lower dosages, less medications or eventually no medications.  Hoping the best for you as well.Later,Racer

Hello, how did your appt. go?

Hello, how did your appt. go? What do you think of the info on the RNS vs. the VNS? To me, it seems like the former provides less side effects and mire info to the doctors but is more invasive. What are your thoughts? I’ve had seizures for over 10 Yrs. Now and only been diagnosed since 2016 due to lack of good Dr’s. Now I am  considered intractable because I am not responding to any meds they’ve had me on(7 total) and up to 3 at once. I’m currently only on two because the adding of three causes me to stutter so badly I can’t form a sentence. Grr. I am asking AGAIN for a referral to an Epileptologist or the Epilepsy Center because “we’ve” hit a dead end after 2.5 years.

I went through with surgery

I went through with surgery for refractory complex partial seizures in March of 2017 after mine was pin-pointed to the amygdala and hippocampus of my left temporal lobe. I had been on over a dozen meds and through numerous neurologists and epilepsy clinics until I found a great one in Houston. They found that I had a benign tumor, as well as a lesion on the hippocampus and amygdala of my left temporal lobe. I had been battling epilepsy for over 30 years. I was 31 at the time of surgery. They decided that the minimally invasive stereotactic laser ablation procedure was a great option for me. It has been a success with no seizures thus far, where I was  having at least four per month while on high doses of three medications. They’ve weaned me completely off of one, and put me on a minimal dose of the second. I still take the full dose of the third, and was told ahead of time that I’d be on it for 2-5 years post op. It’s been a success so far. As I found out, if they can pinpoint the area of origin, the chances for success are much higher with fewer side effects. If there are numerous points of origin, then other surgeries that are typically less effective may be considered.

We shall see.  I went through

We shall see.  I went through a resection back in 2008 and it worked pretty well, just not 100%.Now I just went through an Intracranial EEG to try and figure out why I am still having issues.  The residual seizures I have been having are really just simple partials and auras.  Keeping my fingers crossed that one more resection will do the trick.Later!

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