Epilepsy Talk

A new life – from epilepsy to brain surgery | August 10, 2022

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://epilepsyu.com/another-study-shows-high-patient-satisfaction-with-epilepsy-surgery/

https://www.pediatricbrainfoundation.org/educate/science-news/majority-epilepsy-surgery-patients-enjoy-improved-well-being

https://www.neurologyadvisor.com/topics/epilepsy/patient-satisfaction-after-epilepsy-surgery-is-high-survey-shows/

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


4 Comments »

  1. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — August 10, 2022 @ 12:34 PM

  2. It was hard to hear after my intracranial eeg that I wasn’t a good candidate for brain surgery because I have many different places in my brain misfiring. I decided to try the Responsive Nero Stimulator. That surgery was in April. So far I’ve had no improvements but I’m still hopeful. Unfortunately, Dr. Fountain doesn’t think being completely seizure free is a realistic goal for me, but we’re still hoping I can have a big decrease.

    Liked by 2 people

    Comment by Kelly Falk — August 10, 2022 @ 2:54 PM

    • I hope the number and severity of your seizures abates. What kind of time frame is your doc hoping for?

      Like

      Comment by Phylis Feiner Johnson — August 10, 2022 @ 5:09 PM

      • He hopes to see improvements any time now. But it is a slow process since it can be programed and changed to better recognize the seizure activity.

        Liked by 1 person

        Comment by Kelly Falk — August 10, 2022 @ 7:12 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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