Epilepsy Talk

A New Life — From Epilepsy to Brain Surgery | April 23, 2019

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!

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://www.epilepsyresearch.org.uk/92-of-epilepsy-patients-satisfied-with-results-of-surgery/

 

 


16 Comments »

  1. Had brain surgery crainotonomy for my left temporal lobe seizures and now or tomorrow 600 days seizure free, still slowly weaning off my meds but love my new life!! ❤👍

    Liked by 1 person

    Comment by Janet deardorff — April 23, 2019 @ 11:59 AM

  2. How fabulous. And wonderful to hear a success story like yours!

    Like

    Comment by Phylis Feiner Johnson — April 23, 2019 @ 12:01 PM

  3. Had left temporal surgery in August of 1989, in the summer of my dental school between my sophomore and junior year. Had no delay in school but did of a seizure on the floor of the dental school my senior year. Removed Amalgam from my dozen teeth with silver fillings. No longer had seizure activity and have never taken any more meds. I am still a dentist and remove amalgam every day. Vapor exposure protection is required for me. I had one other seizure 5 years ago do to mercury vapor exposure while removing many silver fillings. Took added precautions with better protective masks and powerful suction to keep mercury vapor exposure to a minimum. I have not had a seizure since proper precautions in every procedure when removing the old silver filled with mercury. Please do not let any dentist put this material in your teeth as many are more prone to seizure with many silver fillings in your mouths. I you have any further questions , I am Dr. Don Perman, dperman@canby.com, please send this to Dr. Vibhangini S. Wasade MD, I would like his thoughts on my issues with mercury vapor exposure, thanks, Don

    Liked by 1 person

    Comment by Donald Perman — April 23, 2019 @ 2:08 PM

    • Don, thanks for your post.

      I think you came here once before.

      It’s scary to think of what silver fillings can do. (And plenty of people have them.)

      But it’s even more scary to know that they haven’t the slightest clue with what mercury can do to you.

      So, if a person needs a filling, what are they to do?

      Like

      Comment by Phylis Feiner Johnson — April 23, 2019 @ 6:31 PM

  4. That is great & wonderful news / just call it a MIRACLE. Something I always wanted to have & I ask & pray for especially every 6 months for a 6 month time span of NO seizures, from 12-25 to 6-25 & 6-25 to 12-25. Christmas to my birthday to Christmas & so on. Been asking this way to God since 1964 when I was old enough to pray when I knew what I was praying for. It is hell to think that even after a brain surgery & praying over that after I went to a revival when I knew that night I was being healed, well MRI showed I still had a lesion in my brain & I had the brain surgery. It only changed my seizure pattern, & after 18 years almost since that day, NOTHING has made much difference in living a life with NO seizures, even as the last part of 2010, 2011 & most of 2012 were 10 days short of a 2 years with NO seizures. So it is GREAT for those who are seizure free from seizure surgery, but for the rest if us where a VNS COULD BE the answer, OR it could cause more seizures to happen & occur more often, I ask WHO WANTS THAT ? That is the best I can get after over 58 years of this seizure life ? Something has to get done about the chemical inbalance of the brain of the GABA, DOPAMINE, GLUTAMATE, GLUCOSE & the other brain chemistry that sets off GRAND MAL seizures, WHEN man made chemicals like MSG’s NITRATES & NITRITES along with ASPARTAME invades & excites all brain chemistry while they affect brain glucose at the same time which is not good for any BBB Blood Brain Barrier. It all affects the nerve connections too from the GUT to the BRAIN & how fast any EXCITOTOXIN can affect the nerve endings in the gut that spreads so quick to the brain, that set off many types of seizure activity & seizures later. But the ANA, NIH, CDC, &other do not care not when they have an FDA to approve more drugs to only limit seizure activity symptoms instead of treating the seizure causes themselves. THAT has been going on for over 100 years & for almost 59 years in my own life.Surgery is great IF it works for you, but WHEN IT DOES NOT, you are never worth doing anything else for in the problem never stops, because THEY do not want to listen to you when you have had a failed surgery that did not stop or end seizures for life. SO YES,,,, I am ready for the RAPTURE like ASAP or NOW.

    Liked by 1 person

    Comment by C D — April 23, 2019 @ 2:28 PM

    • C D everyone’s entitled to believe in a miracle. Don’t you think?

      It may not be the same one, but it’s a miracle nonetheless.

      Like

      Comment by Phylis Feiner Johnson — April 23, 2019 @ 6:21 PM

  5. I had Brain Surgery on my Right Temporal lobe in 2004. It was unsuccessful, so now I’m facing another. This time they want to do an SEEG because they didn’t get what they needed from phase 1 tests. It’s in 2 weeks and I don’t know whether to be excited or scared… I have total confidence in my surgeon, and that’s keeping me calm as I go through this journey again.

    Liked by 1 person

    Comment by Donna Jones — April 23, 2019 @ 9:27 PM

  6. I had a operation on my right lobe in jan 2017. No more epilepsy.very happy.

    Liked by 1 person

    Comment by lanceminnis — April 24, 2019 @ 2:04 AM

  7. I have a friend who had unsuccessful brain surgery the first time, and was seizure free after the second.

    The fact that you have complete confidence in your surgeon, goes a long way.

    Best of luck, Donna.

    Like

    Comment by Phylis Feiner Johnson — April 24, 2019 @ 10:43 AM

  8. Enjoying all the positive responses. I feel much more confident that my Neurosurgeon won’t turn me into a ghost. LOL He’s really an excellent surgeon and comes highly recommended.

    Liked by 1 person

    Comment by Donna Jones — April 24, 2019 @ 1:36 PM

  9. I hope you find comfort in these comments and take heart that you’ll be ok!

    Like

    Comment by Phylis Feiner Johnson — April 24, 2019 @ 1:39 PM

  10. When I had my surgery in 2012 I had run out of options over the years. My initial surgery was to remove the brain tumor in 1981. That was when my epilepsy started, because of the tumor. I went through a dozen drugs from 1981 to 2012. It was well worth having the surgery! I had one hiccup after when we tried getting rid of the Keppra (medication) but my doctor didn’t think it was a seizure. This summer it sounds like we will try to at minimal reduce the Keppra from 500/BID downward.

    Risks? Of course there are risks. I had a buildup of CSF in my skull after the surgery. it was seeping out where the stitches were from the left anterior temporal lobectomy. They had to go in, clean it, re stitch me, and do a temporary drainage (ventriculostomy). But my body wasn’t building up excess fluid in the skull any more.

    I was very peaceful going in for the surgery. I did decide to fill out a DNR just in case something went horribly wrong. I did not want to be what I call a vegetable. However, I was driving a few months after the surgery!! I hadn’t driven in 17 years. In 18-24 months after we started reducing the drugs I had been on.

    Now with a newer devices, one called the “LITT” surgery is much less intrusive then the traditional access (removal of skull region) I had done. Also I’m glad NOW It’s after two medication failures for seizures they start considering other options, such as implants, diets. or surgery to help get control of the seizures. No need to TRY medication after medication and all the symptoms that come along with the drugs.

    Liked by 1 person

    Comment by Travis — April 25, 2019 @ 10:48 AM

  11. Being a guinea pig with meds is unfortunately what most of us feel like.

    If this doesn’t work, try some MORE.

    Or here’s something ELSE to try.

    Happily, they’re not that casual about brain surgery.

    Because yes, “it IS brain surgery” and there’s plenty to think about.

    For example, your advance directive, would have been a tremendous help, to both you and your loved ones.

    Not that many people have the courage to look a possible calamity in the face and deal with it.

    No less, act upon it.

    I salute you for looking at the facts head on and dealing with them.

    Although yours was not an easy journey, it’s one to take joy in.

    Both for your success and the success of the surgery.

    You make me proud to know you, Travis.

    Like

    Comment by Phylis Feiner Johnson — April 25, 2019 @ 6:05 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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