Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Can surgery cure epilepsy?

Thu, 11/02/2017 - 16:01
My son, Billy is scheduled for surgery and I am concerned that SUDEP will occur before that surgery happens. I am constantly checking in while he sleeps. I am afraid of disturbing him or upsetting him so I make up a reason I am looking in on him so he will not be alarmed by my obnoxious behavior. Billy will be 28 this December. He has had seizures since 8. Billy would have had the surgery but his doctor is out of network and the insurance will not cover it. After January the new insurance will have them in network but our coinsurance will be 10% of surgery and all doctors! That could be over $50K. I started a Go Fund Me campaign and it has raised 10% of the cost so far. ACA is reviewing his earnings history currently to see if he can use MediCal as he has missed lots of work this year from his breakthrough seizures while taken his meds. The neurologist says he is at the limits for Lamactal and Keppra and surgery is a good option but it is expensive even with insurance. To read his story: https://funds.gofundme.com/dashboard/fixbillysbrain

Comments

Can surgery cure epilepsy,

Submitted by RTL on Fri, 2017-11-03 - 10:29
Can surgery cure epilepsy, you ask.  I suppose it can.  Will it?  That's hard to say, particularly without knowing your medical circumstances.  I don't think the doctors will ever say that surgery will "cure" epilepsy.  Their stated objective will be to "control" the seizures, hopefully with less medications & side effects.That said, I have had surgery and have detailed my thoughts and experiences here:https://drive.google.com/file/d/0B4W1q98dcPYKT0hfSTI2N3ZuYjA/viewThe link you provided for Billy's story does not work.  This is a better one:https://www.gofundme.com/fixbillysbrainGood luck!Kevin

I suppose checking on your

Submitted by birdman on Fri, 2017-11-03 - 22:10
I suppose checking on your son as he sleeps will help comfort you but it will do nothing to prevent SUDEP.  SUDEP is serious but you cannot live worrying about it.  Yes you need to get your son's seizures under control. I had epilepsy all my life and my parents who were self-employed were uninsured.  First they paid for all of my Dr visits, pills, hospitalizations.  They did not qualify for state help for insurance because they owned the business.  They would have had to sell the business, spend all the money, and then they would qualify for help.  STUPID!  As I became a teen I paid for this.  It was so depressing to pay for it all and not have complete seizure control.Then the opportunity came up for me to talk with specialists about brain surgery.  This was done at a University Hospital.  I was excited about the opportunity but terrified of how I would pay for it.  The hospital referred me to someone there who gave me suggestions.  I was told to go through that first long-term EEG and then wait for the first bill (which would be big).  Then take that first bill to my health dept. and ask for help paying for it.  I qualified for Medicaid because my income was low and my expenses where so high.  I now play the system to stay covered.  It's not fun to be restricted by the rules but I don't know how else to do it.  Because Billy is 28 he is independent and it does not matter what his parents owns or how much they make.  If he needs help the government should be there.

Can surgery cure Epilepsy?

Submitted by Jazz101 on Sat, 2017-11-04 - 16:00
Can surgery cure Epilepsy? Well, it's a yes and no answer. I say that because the brain is extremely complex. We see it in individuals who lived for, say, more than 50 years -- individuals who never had Epilepsy -- and then suddenly develop Epilepsy.So I guess what I am trying to say is Epilepsy is like aging. Some people live to see 90, probably 100. And then some leave earlier. As a result I don't think anyone who is going into surgery should be telling themselves that they know for sure they will be "cured" so to speak. You go it hoping you will be seizure free, but mindful that the complexity of the brain cannot guarantee that. When I had my surgery done that was my mindset. And in my case I have reason to be practical about not being "cured" because we could not remove everything. But so far so good. But even in patients who would have been able to remove everything that was documented as seizure centered at that moment in time, they still should remain practical about the complexity of the brain. That doesn't mean you keep telling yourself you know for sure seizures will return. No. You just check it off as a small probability. Sort of like the way you keep a smoke detector in your home. It's a "just-in-case." It doesn't mean we keep looking at it every second. We just go on with life.Luckily, neurology has advanced significantly so there are additional options that will be available to try just in case surgery does not do away with seizures for life. That said, anyone who is going into surgery should do so hoping for the best. Sort of like marriage, or maybe a financial investment. With surgery, the goal is to balance things to the best of your ability. Once you can do that you will  be able to handle things relatively well regardless of whether you go seizure free for life. That is what made surgery so easy for me. Perspective; perspective; perspective. Best Regards

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.