Epilepsy Talk

A New Life – From Epilepsy to Brain Surgery | June 4, 2020

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 the man 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.medpagetoday.com/MeetingCoverage/AES/43318?xid=nl_mpt_DHE_2013-12-10&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g678262d0r&userid=678262&email=pfjohnson@comcast.net&mu_id=5845719

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/

 

 


30 Comments »

  1. And after you have the surgery, you get the urge to offer assistance and support to anyone interested. I’ve talked to almost 20 people since my surgery. Most of them have gone on to have the surgery, some just want to know more about it in case they feel there’s no alternative.

    Liked by 2 people

    Comment by Ed Lugge — June 4, 2020 @ 12:36 PM

    • I thank you for having the courage to say that Ed!! Sometimes we almost feel like we have no choice either, but it’s what we may lose in the process that’s a tough pill to swallow!! I.e. we may not be able to do physical work or play anymore.

      Liked by 1 person

      Comment by Kathy S.B — June 8, 2020 @ 11:27 AM

  2. It baffles me that people are willing to consider having their skulls opened up but are not willing to consider giving up bread, cookies, etc. and giving the ketogenic diet a serious try first.
    If you have really “tried everything” including not just meds but also dietary changes, then, sure, surgery is an option for some people.
    Eating steak, bacon, and eggs is really not all that hard. And it works.

    Liked by 2 people

    Comment by paleobird — June 4, 2020 @ 1:12 PM

    • Paleobird, the problem is that keto just doesn’t work for everyone. And hopefully, people have explored other options, before surgery.

      It’s a scary proposition and I don’t think anyone who has to undergo surgery, takes their decision lightly.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — June 4, 2020 @ 1:17 PM

      • Yes because some have spouse and children they would just like to be with and make all the memories in the world with!!

        Liked by 1 person

        Comment by Kathy S.B — June 8, 2020 @ 11:29 AM

  3. Ed, you’re not only an educator, but a good advocate. Someone who’s already been there and shares his story of success with others.

    I’d say you’re a success in more ways than one. Bravo to you!

    Liked by 1 person

    Comment by Phylis Feiner Johnson — June 4, 2020 @ 1:14 PM

  4. I had Laser ablation surgery in January 2020. No seizures. Hopefully none to come. Dr. weaning off current meds. We’ll see if it worked or not. But I wouldn’t have had my skull opened for anything. Lucky this was an option for me.

    Liked by 2 people

    Comment by Laura Little — June 4, 2020 @ 1:46 PM

  5. It’s inspiring & encouraging to know that brain surgery can lead into successful outcome in controlling seizures & make radical changes for better life eradicating epilepsy.
    Sharing the experience of those who successfully managed to take advantage of brain surgery, those of us who sought reliability & confirmation in the precedure to reduce or stop our seizures, this helpful informative article is certainly very positive input to consider that going for brain surgery might be the best ultimate solution to control our seizures.
    Therefore, thank you for your tireless research on brain surgery & sharing the information with those of us who had difficulty deciding to take advantage of brain surgery.
    Gerrie

    Liked by 2 people

    Comment by BahreNegash Eritrea — June 5, 2020 @ 1:54 PM

    • It’s good to know the possibilities and embrace them.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — June 5, 2020 @ 1:56 PM

    • May I please ask if you have had any form of surgery Gerrie?

      Like

      Comment by Kathy S.B — June 8, 2020 @ 11:33 AM

      • No Kathy,,, Thank you for asking but even though I would like too, I haven’t had any form of surgery yet.
        But I’ve extensively discussed the procedure with my Neurologist & stayed at Stanford University Epilepsy Hospital for a week & went through presurgical tests & needed more tests for the surgeons, my Neurologist & me to make conclusive decisions to go for brain surgery.
        So far, no recommendations has been made neither any date has been set for my brain surgery by Stanford University.
        But reading about the people who went through brain surgery & successfully controlled or reduced their seizures makes me feel I can’t wait to get over the whole drama.
        While I’m very happy for those who has controlled their seizures through successful brain surgery, I want to have the same outcome for myself, free of seizures.
        Gerrie

        Liked by 2 people

        Comment by BahreNegash Eritrea — June 8, 2020 @ 2:46 PM

      • Goodmorning Gerrie 😊. YES I AGREE!! ME TOO!!!!! However I’m thinking of asking if my “MALE NEUROLOGIST” can please transfer me to a “FEMALE NEUROLOGIST” who maybe able to understand the female aspect of life. I felt VERY SHRUGGED OFF by this neurologist after waiting over a year to FINALLY SEE HIM!!!!! And then he never even heard me except to PROMPTLY DIAGNOSE ME AND GIVE ME MEDICATION I KNEW WEREN’T THE RIGHT ONES!!!!! He obviously NEVER REALLY READ MY CHART PRIOR!!!!!!! Or he would have know the gadget he poked me with was “LATEX” (I’m allergic to latex) and I CAN’T TAKE GENERIC MEDICATIONS!!!!!!! Which he prescribed me regardless of me bringing it to his attention prior!! He poked me with a “LATEX PIN” and then VERY QUICKLY TOLD ME “YOUR HAVING FOCAL SEIZURES!!”. Gave me medication and walked out without speaking to either me or my husband. I told him “I’m allergic to generic medication!!”. He said “IT DOESN’T MATTER” and left. So we walked out, but when we got to the vehicle my leg started really itching and I tried to ignore it. The next day I had a “HUGE LUMP ON MY LEG!!”. I ended up on an I.V. Antibiotic and took that medication for 3 days and COULDN’T REMEMBER HOW I EVEN GOT HOME!!!!! Then my head I SWEAR FELT LIKE IT WAS GOING TO EXPLODE!!!!!!! And returned the medication to the pharmacist and told him to PLEASE GET THAT MEDICATION OUT OF MY TOWN NOW!!!!!!! Even he was stunned that the neurologist put me on generic medication when it was CLEARLY IN MY CHART THAT I WAS ALLERGIC TO GENERIC MEDICATIONS!!!!!

        Liked by 1 person

        Comment by Kathy S.B — June 9, 2020 @ 1:17 PM

      • Now I have no choice but to meet him again on Friday for ANOTHER APPOINTMENT!!!!! THANK GOD/GRANDMA IT IS ON THE PHONE!!!!!!! Even my husband IS DREADING IT!!!!!!!

        Liked by 1 person

        Comment by Kathy S.B — June 9, 2020 @ 1:19 PM

      • Kathy, will you ever be able to switch neuros?

        Liked by 1 person

        Comment by Phylis Feiner Johnson — June 9, 2020 @ 1:54 PM

      • I am going to try VERY HARD TOO!!!!! I’m just hopeing I don’t upset this neurologist too much, but sometimes I think we just need our own fit or at least someone we feel comfortable with and can ask questions to without feeling less than or disregarded. I guess I just did want to wreck anything for myself in terms of neurologists

        Liked by 1 person

        Comment by Kathy S.B — June 9, 2020 @ 9:39 PM

      • Do you or you online “Epilepsy Talk Family” have any questions I should ask the neurologist? Seeing how I had to wait a year and now a year and a half to be able to finally see/talk to him for a 10 minute phone call? Thank you 😊. You know Phylis (even though I had my own personal animal experience with marijuana) when I did ask this neurologist back in December he COMPLETELY SHUT THE IDEA DOWN WITHOUT ANY THOUGHT!!!!! Same with the VNS AND RNS. Just saying I guess I want to be properly prepared before he hangs up on me again!! I know they also say to phone them back ASAP IF WE HAVE A PROBLEM (which I did do) but I also never received a call back from him and my family doctor never received a follow up letter from him either.

        Liked by 1 person

        Comment by Kathy S.B — June 9, 2020 @ 9:45 PM

      • Kathy, this may help:

        Secrets to Better Care from Your Doctor… https://epilepsytalk.com/2018/08/15/secrets-to-better-care-from-your-doctor/

        Liked by 1 person

        Comment by Phylis Feiner Johnson — June 10, 2020 @ 10:54 AM

      • Thank you Phylis 😊🙏🏼🦅💕. Please have a very good safe memorable day today and please take care of yourself 😘

        Liked by 1 person

        Comment by Kathy S.B — June 11, 2020 @ 10:48 AM

      • Same to you, Kathy!

        Liked by 1 person

        Comment by Phylis Feiner Johnson — June 11, 2020 @ 12:01 PM

  6. Since they opened up my skull–it’s not that bad really–I’ve been relatively seizure free for 15 years. Each surgery is different and the supposed cause(s) of seizure can be located in different parts of the brain. Laser ablation can be effective in some cases but not all. Other options, like a ketogenic diet can be positive for some. But trying out different treatments that don’t work can delay more effective treatments like brain surgery while possibly engendering long term damage that may also make subsequent treatments less effective.

    Liked by 2 people

    Comment by philamisan — June 5, 2020 @ 2:37 PM

    • Thank you Philamisan 😊. You are VERY RIGHT!! However when I was given the opportunity it was out of the blue, my children were all very young and my husband was SECRETLY PETRIFIED!!!!! More for me and the changes it would make for me in the negative for our lives at the time. Because even I sent him back to college too!! And was still VERY ACTIVE as a coach, community member, wife, mom and on and on. And it was given at a time when even the neurologist couldn’t go over all of my test results with me at the appointment because the power went down in the hospital at the time!! All I wanted and now have are all of my children and husband educated and happy, healthy and employed. On that note NOW I was considering something for myself, but in all honesty my phone appointment with my neurologist on Friday was for ten minutes and he outright told me there’s nothing he can do for me or to help me because the nerves in my neck are damaged and the medications he already tried me on in December backfired!! And said he meet me in 6months or later to go and see my family doctor. In other words brushed me off!!!!! However I did ask about surgery and he just no and hung up

      Liked by 1 person

      Comment by Kathy S.B — June 14, 2020 @ 8:33 PM

  7. Very good point. And important to remember. Thanks philamisan.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — June 5, 2020 @ 2:41 PM

  8. Article on seizures by Lisa Sanders, M.D. dated June 3 in the online New York Times Magazine section.

    Liked by 1 person

    Comment by HoDo — June 6, 2020 @ 10:51 AM

  9. The Boy Slumped to the Floor. Could These Be Seizures?

    Like

    Comment by Phylis Feiner Johnson — June 6, 2020 @ 10:57 AM

    • That’s it. Thx!

      Liked by 1 person

      Comment by HoDo — June 6, 2020 @ 11:03 AM

    • Painful but beautiful story, credit to the families & doctors who worked together to cure the disorder providing the children a chance to live a better life.
      Gerrie

      Liked by 2 people

      Comment by BahreNegash Eritrea — June 8, 2020 @ 4:51 PM

    • Sorry HoDo I can’t seem to be able to read it or I would.

      Liked by 1 person

      Comment by Kathy S.B — June 14, 2020 @ 8:34 PM

      • Just click on the title and you’ll be there. But perhaps you have to be a subscriber to the New York Times (which I am), to read the full article?

        Liked by 1 person

        Comment by Phylis Feiner Johnson — June 15, 2020 @ 9:43 AM


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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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