Epilepsy Talk
A New Life – From Epilepsy to Brain Surgery | February 26, 2021
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
http://www.medicalnewstoday.com/releases/269881.php
https://www.neurologyadvisor.com/epilepsy/patient-satisfaction-epilepsy-surgery/article/400683/
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1528-1167.2011.03160.x
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5887616/
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The last thing i remember, the nurse asked me to count to 10, before i reached 6 i was out like a light. They got the circular saw out and sawed a horse shoe shape on the left side of my head. They then pealed the bone flap over and then it was the brain surgeons turn to take over. With machine style accuracy she digs the baseball sized tumor out of my brain, but one area gave her some problems and that’s where my seizures start today. She cauterized all the blood vessels going to the brain tumor and noted that the embolization, to cauterized the blood vessels going to the tumor the day before, where not holding well. After final confirmation that no more tumor remained as far as the eye could tell, they started to close the wound and put everything back to where it was. So now humpty dumpty was back together I had no choice it’s either i have surgery or die.
For the next few months, healing was hard. I would NOT sleep on the side of my surgery. Was on lots of medicines. Although i didn’t really have any pain to speak of, which was a good thing. Years after, I asked my neiuro if surgery could be an option for my seizures, he didn’t think so. Would i have head surgery again if it healed my seizures, u bet.
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Comment by Zolt — February 26, 2021 @ 3:27 PM
You are one brave guy, Zolt.
And just as Charlie so bravely did it again, so would you.
What a warrior!
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Comment by Phylis Feiner Johnson — February 26, 2021 @ 3:42 PM
Well i don’t know if i was brave, because i didn’t have much of a choice. But having been thru it, i know it’s something one can live thru. Even after 14 yrs there are still valley ridges in my skull where the cut was made. But all i can say is that if it stops ones seizures and the docs are pretty certain they can do it, then definitely i would have it done again.
If surgery would stop ones seizures i’d say do it, because living with epilepsy and all the fear, anxiety and all the negatives that come with seizures, i would think it’s a no brainer.
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Comment by Zolt — February 27, 2021 @ 7:34 AM
Saw a neurologist just this week- he wants to do VNS.
Only 50% success is like saying two people have the surgery performed- 1 has a chance of some success, and 1 ends up with no improvement, worse off or dies…… Also, very few patients ever end up seizure free, so conditions would not be any better than already and still unable to drive, What is the number of VNS surgeries compared to gall bladder, joint, hernia, cosmetic?
With most insurance companies not paying for VNS, it’s like paying over $10,000 to make yourself worse than you already are. Doctors are happy if they make the money- and show no concern whether the work is successful or not.
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Comment by Karen — February 26, 2021 @ 5:04 PM
Karen, on the bright side of things, I have a friend who was literally handicapped with intractable epilepsy.
He even called me one night, threatening suicide. That’s how grim things had gotten.
Getting a VNS, changed his life. Yes, he still does have seizures. And yes, he still has to take his meds. But his quality of life has improved so much, that now, he’s a different man.
This article may help:
Vagus Nerve Stimulation…Is it for YOU?
https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%e2%80%a6is-it-for-you/
Please let me know of your decision and how things work out. Wishing you a speedy resolution.
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Comment by Phylis Feiner Johnson — February 26, 2021 @ 5:29 PM
I counted backwards from 5 and only got to 2. So Zolt and I having that counting-before-surgery thing in common. It was amazing that there was no pain in any of those brain surgeries … until the medication wore off. You’d think I would know that by my FOURTH brain surgery. I put that number in all capital letters, because I was desperate not because of bravery. When it becomes routine to say to your spouse, “It’s either tonight or tomorrow night that I have another tonic clonic seizure,” then it’s time to do all you can to at least improve your situation. The surgeries were all different – cyberknife, “regular,” specialized, and intense. The last surgery involved a neurosurgeon and a team of neurologists. They worked for 6 hours on my brain by identifying where the misfires originated and if those areas would be removed. They were all in agreement that they were surprised how much damage had been done by a (noncancerous) cavernous malformation that had hemorrhaged. My quality of life, however, is better because of those surgeries. I don’t question what I did, yet for all of the advanced, heady science that is involved, it is quite a visceral decision. But worth it.
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Comment by George Choyce — February 26, 2021 @ 5:36 PM
But you did it George. FOUR times. I understand that you were aware of the need. But to go once more into the fray all those times, requires someone of your faith and beauty.
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Comment by Phylis Feiner Johnson — February 26, 2021 @ 6:06 PM
I can’t see a subject like this and not comment on it.
When you just have an almost fatal car accident, you’re ready to take chances with brain surgery. When you know from the two parents and six children in your family, four have passed away already, the fear of a fatality isn’t there. The risks from the surgery included a possible stroke on the right side, loss of vision from 12 o’clock to two in my right eye and loss of my math ability. After surgery, you can expect to spend the next 24 hours in ICU and the next week in your hospital room.
Even though I never asked for it, I was given the odds for the results of my surgery. I had a better chance of dying in a car accident than from the surgery…and I just had that accident. I had a 95% chance of better seizure control which I was ready to accept as a positive result of the risk I was taking. But then I was told I had an 85% chance of total seizure control while still taking my meds. When he said I had a 70% chance of total control without medication, I was dreaming what that would feel like.
I would have been happy to see the positive side of half of these situations but I didn’t. I saw them all. The right side still worked as well as full vision in the right eye. I was asked to figure out the square root of 7,450 and I came up with approx. 86.3 (my epileptologist would never give me a perfect square like 7,396 or 7,569). I spent just 12 hours in ICU and two days later was being asked if I’d like to go home on the third day. My brother and wife made me stay another day. ☹ With my doubt that a 40-year problem could be totally corrected on the first try, I held on to Dilantin for 5 1/2 years before I tried being a part of that 70% group in control and off medication but I made it.
There’s one subject I’ve never seen talked about before but I hope someday will appear and that’s how people like me who had a successful surgery feel about everyone else who still battles with epilepsy. The feeling gets stronger that in any way possible, we want to see people get better or total control of their seizures so we can LISTEN to positive stories as much as we tell them.
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Comment by Ed Lugge — February 28, 2021 @ 2:42 PM
Oh Ed, YOUR story is so positive and inspiring.
The risks sound totally mind numbing. But as you said: You survived the car wreck and the statistics for that weren’t on your side.
Still, I think it took a lot of courage. And conviction. Happily success came your way.
(But I wouldn’t be able to do the square root of anything, no mater what my mental state. How did you do it? Are you some kind of math genius?)
Positive stories are a bonus. I think, not only are they far and few between, but many people are spooked by brain surgery. Before, during and after.
But, if you’re looking for compelling stories, I think Zolt and George Choyce fit the bill. 🙂
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Comment by Phylis Feiner Johnson — February 28, 2021 @ 3:04 PM
Thank you, Phylis! Zolt’s and George’s stories are the kind I’m looking for and I commend them both for their courage.
I’ve never been called a math genius but I’ve heard the term “walking calculator” a few times. With my struggle in most classes at school, I wanted a subject that would make up for it. When I see math, I don’t just calculate. I investigate. I look for methods of easier calculation and then watch it become memorization. I know every number from 1 to 100 squared because I work out math in my head so I can store the answer in my long-term right hippocampus who’s doing fine.
The left hippocampus was part of the 3-inch cube they removed but I don’t miss it. The right makes up for it. I do miss the amygdala though because I’m just not used to crying as much as I do now.
Wow, you just made me think of something! Maybe the reason I was being asked the square root of odd numbers was to make me use the left side to calculate instead of using the right side to find the answer I stored there. What do you think?
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Comment by Ed Lugge — February 28, 2021 @ 7:45 PM
I agree that your doctor was seeking to challenge you. Admit it or not, I think your math skills are amazing.
It’s a little bit like how Beth Harmon imagines chess moves in her head in the marvelous new movie “The Queen’s Gambit.” That kind of talent shouldn’t be belittled.
You’ve got it, you use it and that’s wonderful.
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Comment by Phylis Feiner Johnson — March 1, 2021 @ 8:57 AM
Congrats on your success! Sounds very interesting Would yk how insurance covers Would it be acceptable as required? Does patient hve
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Comment by Barbara M Harrison — May 1, 2021 @ 10:54 AM
Barbra, here’s the closest thing I could come up with to answer the question I think you are asking:
Health Insurance — No-Cost & Low-Cost https://epilepsytalk.com/2017/08/17/health-insurance-no-cost-low-cost/
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Comment by Phylis Feiner Johnson — May 1, 2021 @ 11:01 AM