Epilepsy Talk
A new life – from epilepsy to brain surgery | November 18, 2024
Leanne Chilton, triumphant author of “Seizure-Free: From Epilepsy to Brain Surgery, I Survived and You Can, Too!” is a proud survivor and has a wealth of wisdom to share.
“We can’t control the future,” she says. “But we can make every attempt to improve the quality of our lives.
With a seizure disorder, you are condemned to fearing a life without either freedom or control.
And after surviving brain surgery, you’ll still be questioned by society on your sanity and well-being.
You’ll have to work ten times as hard to prove that you can make it in this world, and you will have to overcome a lot of disbelief and rejection in the process.
After surgery, there is a very real transformation you have to go through.
Acceptance that you DID have epilepsy, perhaps denial that you have had brain surgery, and the realization that you’ve lived.
Sometimes the reality itself is difficult to grasp. Where you’ve come from and where you are now.“
Should you?
Of course, surgery isn’t for everyone.
However, more than 90% of patients who had surgery for drug-resistant epilepsy said it was worthwhile, when interviewed up to 20 years later.
“Overall, the great majority of patients — 92% of them — expressed satisfaction with undergoing epilepsy surgery,” says Vibhangini S. Wasade, M.D., a Henry Ford Hospital neurologist and lead author of the study.
“Following surgery, more patients were able to drive, and those with favorable seizure outcomes were more likely to be employed full-time and less likely to be taking antidepressant medication,” Dr. Wasade adds.
Just being able to drive is a joy!
And in the opinion of Marianna Spanaki MD., head for the Henry Ford Comprehensive Epilepsy Program, “surgery is underutilized.”
I think that’s a little over zealous, but she does have a good point.
However, surgery is more than just a procedure. And there’s plenty of room for doubt.
Some blame it on inertia, others call it fear. There are no guarantees. And everything is relative.
Seizure frequency may be reduced, but not eliminated.
Others may be disappointed by the only slight improvement or changes from the surgery.
After all the angst and anticipation, this may be the most bitter pill to swallow.
But for those who have intractable epilepsy, it may give them a literally new lease on life!
Like my friend who had recurring seizures for 53 years…
After a botched surgery, he had the courage to try it again.
(He really did his homework this time!)
Happily, the second surgery was 100% successful. He is now seizure-free.
He drives, has a fulfilling job, can travel, visit whenever he wants. He’s free. Free of epilepsy!
“Seizure freedom is a realistic goal,” said Nathan Fountain, MD of the University of Virginia in Charlottesville.
Just ask the 90% of patients who had surgery for drug-resistant epilepsy. I bet their lives have changed!
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Resources:
Leanne Chilton — Seizure Free: From Epilepsy to Brain Surgery, I Survived, and You Can, Too!
https://books.google.com/books/about/Seizure_Free.html?id=nhxHmGqcJwEC
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5887616/
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1528-1167.2011.03160.x
https://www.epilepsy.com/treatment/surgery/risks-and-benefits
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About the author
Epilepsy Talk 
this election day nov5th I celebrated 38years since my left temp lobe surgery nov5th 1986 and 37 1/2 years no meds. Iam now 65 and retired Good luck and God bless you all.
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Comment by believerpractically35b0c48b08 — November 18, 2024 @ 1:08 PM
YAY!!!
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Comment by Phylis Feiner Johnson — November 18, 2024 @ 1:13 PM
Dr. Nathan Fountain is actually my neurologist at UVA. He’s been working to get me seizure free for the past 20 years but we haven’t made it there yet. Dr. Jeff Elias performed brain surgery to place a RNS device about 2 1/2 years ago and I have now been 2 years grand mal seizure free. I am grateful for that but the simple and complex partial seizures are relentless. I don’t regret having surgery it just hasn’t been the life changing event I had hoped it would be. The great thing with the RNS device is they can make changes to it without opening up my head so there is always hope that things can improve for me.
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Comment by Kelly Falk — November 18, 2024 @ 3:23 PM
I’ve read and heard wonderful things about the RNS, in fact a friend of mine is considering one now.
But I can understand the frustration of it not being the ultimate solution for you.
What do you think the next step might be?
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Comment by Phylis Feiner Johnson — November 18, 2024 @ 4:52 PM
I’ve pretty much given up on medications. I’ve tried about 30. I’m still on Vimpat which I don’t think is doing anything, Briviact which worked for about a month and then my brain found a way around it, and Aptiom which actually has helped with my complex partial seizures a little. So for now I’m focused on the RNS. Since they can keep making changes to it I’m hopeful they’ll find the right setting. I’m actually seeing Dr. Fountain next week for an adjustment. I’m always saying that I don’t want to totally give up hope but try to be cautiously hopeful.
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Comment by Kelly Falk — November 18, 2024 @ 5:34 PM
You’ve been down such a rugged road, yet remain so strong and persevering. Please don’t give up now. Keep that spirit of bravery and maybe it will just pay off.
And as as long shot, you might consider: (start at the middle of the article:)
Brain surgery alternatives
https://epilepsytalk.com/2023/01/17/brain-surgery-alternatives-2/
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Comment by Phylis Feiner Johnson — November 18, 2024 @ 5:49 PM
What can I say? I had an almost fatal car accident from a seizure so I wanted surgery to fix my problem.
I got these figures from my epileptologist: 95% chance of better seizure control, 85% chance of total control ON meds, 70% chance of total control OFF meds. My surgeon told me I had a better chance of dying from a car accident and I already had that so I had nothing from the surgery to worry about. When the surgery was done, I was supposed to spend 24 hours in ICU. I spent only 12 hours there. I was supposed to spend a week in the hospital. They wanted to send me home on the third day. Some people who had the surgery were telling me I could have a headache for a month. It was gone in two days.
I ended up being part of the 70% because I had no seizures and 5 1/2 years after surgery I took my last pill. December 11 will be 24 years since the surgery. Next year when I hit 25, I plan on buying everyone at our family Christmas a $25 lottery ticket. Then I’ll tell them, “You’ll only know how good I feel if you win the jackpot. Nah, I feel even better than that.”.
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Comment by Ed Lugge — November 18, 2024 @ 9:12 PM
OMG Ed, you ARE blessed! Could you include me in that $25 lottery list??? 😊
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Comment by Phylis Feiner Johnson — November 18, 2024 @ 9:22 PM