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Intractable seizures

Thu, 10/17/2019 - 02:32
Hello all I am 40. I have had seizures since adolescence. Started as auras and grand mals. Treated with different anticonvulsants. About 10 years ago, I went into SE and was placed on a ventilator for 14 days. At that time epilepsy was diagnosed as focal to secondary generalized seizures. That diagnosis hasn't changed since. Although mostly now I have focal seizures (Simple partial) upwards of 4 plus times a week with a grand mal about once or twice a year. Sometimes I will have a random nocturnal seizure. Medications have not controlled my seizures. I am on 3 anticonvulsants. Lamictal, Topamax and Briviact. My epileptologist referred me for VNS placement as well as wants me to strongly consider LITT or temporal lobe resection. He has referred me for EMU/presurgical consult. I am anxious/overwhelmed/scared about this. He said that the surgery would basically be the cure and the vns in combination with meds just treatment. He is a great neuro specialist and I do trust his plan of care. Really wanted to hear any thoughts. Does anyone else have any experience with VNS or surgical treatment for intractable focal seizures ?


Hi Criste,Thanks so much for

Submitted by Anonymous on Thu, 2019-10-17 - 09:02
Hi Criste,Thanks so much for posting and we understand your concerns. If you decide to have surgery, your epilepsy team will help prepare you and your family. Your healthcare team will also review what options are possible for you and will help guide you through the proper evaluation and testing, prior to making a decision about surgery. Working together with your epilepsy team is the key to understanding your epilepsy and the best treatment options for you. It's important that you continue to express any concerns you may have and talk with your doctors about your personal goals and expectations for epilepsy surgery. is also important to remember when preparing for epilepsy surgery that every individual experience and path is different. Review our list of commonly asked questions about epilepsy surgery, learn more about the recovery process and common themes for people living with epilepsy & family members during their journey through epilepsy surgery, here: are several different types of surgery for treating people who have seizures that don’t respond to medication, or other therapies.To learn more about various types of epilepsy surgery and questions to review with your healthcare team, please visit:  It may be helpful to  connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at:  to find support groups, events, and programs in your community. Or contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, [email protected], can assist in connecting you to resources, provide referrals and additional support.    

I am 53 and have had seizures

Submitted by birdman on Thu, 2019-10-17 - 19:56
I am 53 and have had seizures all my life.  I've gone into status epilepticus twice (1981 & 1988) before I was referred to epilepsy center for consideration of surgery.  Unfortunately after a resection from right temporal lobe the seizures continued.  I had long looked forward to having surgery done and so the experience of testing, though often not pleasant, brought hope.  Next in 1999 I had VNS implanted.  The treatment didn't stop the seizures completely but it was during that time I noticed I had fewer generalized seizures.  I ended the treatment in 2004.This summer I had the RNS unit implanted.  The seizures continue but I have hope that in the long run RNS will make a big difference.  I find it easier to take the surgical option when I reflect on the serious discomforts and side effects from the 17 different anti seizure meds I've tried.  

I’ve had intractable epilepsy

Submitted by Patriotrehab on Fri, 2019-10-18 - 07:04
I’ve had intractable epilepsy for 19 years as a result of medical neglect during complications from my pregnancy 19 years ago. I’m now 38 and my son is now a healthy adult. One epilepsy specialist has talked to me about surgeries including VNS. In my case, he said “it won’t make enough of a difference to make a difference” and at the time my seizures were bilateral so resectioning wouldn’t have been an option, but at the time I wasn’t even willing to consider the less invasive LITT because I had a young son. I now have a new epilepsy specialist who happens to run the MEG Center. I certainly hope that you are getting an MEG done as part of your work up. Not every place has these, but if I was considering surgery especially because I’ve had two EMU studies where one showed focal onset seizures on the right temporal lobe and the other showed focal onset seizures on the left temporal lobe and many other routine EEGs have shown abnormalities on my right parietal lobe or bilateral abnormalities or generalized abnormalities. I would want the full work up to be sure they have all the info they needed and the best of it before doing something like that and I would be asking them a lot of questions like “why is my right side not showing seizure activity now, but my left side is” if there are conflicting results like there are on mine 19 years apart. You want to be a success story like a gentleman that posted up a month or so ago who said his seizures were cured. Michael, unfortunately is still fighting the good fight. No matter what your decision and the outcome, perseverance is still the way to get through life! Do not be afraid. I wish you the best!

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