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Is surgery a "last resort" or overlooked for epilepsy?
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Haylen_WebMD_Staff posted:
Click the link below for information about a new study showing that for some epilepsy patients, whose seizures are not controlled with drugs, performing brain surgery earlier may prevent years of suffering.

Surgery Often an Overlooked Option for Epilepsy - Some Patients May Be Surgical Candidates Soon After Failing Drugs

Have you had surgery or have you known those who have? What are your feelings about surgery to control seizures?

Haylen
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hula_dancer73 responded:
hi haylen,

I never was a candidate for brain surgery, too late in life nad more than one lesion on my brain. Trying to resect one wround not take care of the problem.

My neuro said he did not want to play games with my brain at this stage in my life, so I wound up with the VNS.

Saved my life literally. My EP was so bad is was killing me and had to do something so I was imlanted with the VNS.

Works great and me and my 16 year old both have one.

Her EP is harder to control than mine. I have complex partial szs that generalize and she has plain old T/Cs.

I am not sure about the brain surgery becuase it may not make somone sz-free and may still have to take meds.

I have known 3 ppl on this site and from othjer sites that have had brain surgery and it did not work out for them and they had to have a second one and were on AEDs for the rest of their lives. Personally I do not think it is a safe proceddure but each to their own. IT may be a last desort for some bu the VNS should be put before the surgery becuase it can be controlld both by the doc at his end and you at your end, you acn also call him/her and ask about things that need to be done or changed and they or at least mine will call back and talk to me person over the phone and will have me come in to make the corrections meeded to be made to make me more comfptable.

YOu can pass a magnet over the device and if you have T/Cs only then a person or relative can pass it over the device for you thus shortening and possibly stopping it.

teh doc during your visits to his office he can hold a "Wand" over the device and he can see everything you have done wiht it. He can adjust settings, ampreage, and so on.

I just had my amperage increased from 2.25 to 2.50.

he also increased my one med as well.

so I think the VNS should be tried BEFORE SURGERY.

it still has a great possibliltu of elimating 2/3 of teh szs if passed over the device with the magnet.

hula_girl

VNS rep for the island of Oahu.
 
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chomper99 replied to hula_dancer73's response:
I read something on here awhile back about MEG, that they can scan you to see what part of the brain is affected. and Drs can get an Idea wether it is safe or not for someone to do the surgery.
 
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saxofone1 responded:
Hi Haylen,

I had the partial rt lobectomy in '02. The grids were placed on April 5(my 41st birthday) and the lobectomy was done on the 12th.

Surgery had been considered 2X before I had it. The first time was suggested by my then doc in the Bay Area. But Stanford Medical Center felt I was too old. This had to be the late 70s or early 80s. The second time, about the mid 90s, my then docs in Mpls suggested it to me. I declined because of the high chance of having to learn to walk again or a possible speech problem that the docs told me about.

Time passed along with improved med technology. The tests I took in late 01 and into '02 showed that I was a good candidate. To me, the tests (the WADA, the standard eeg, the long memory test,etc) were more of a bother than the actual lobectomy.

I am glad I had the lobectomy. My seizure activity has had a 95% or more decrease. At one time I was having 15-20 seizures/mo. As time passed the frequency decreased but the seizures were stronger. I recorded only 3 seizures for this past year. I am thrilled with the outcome.

Epilepsy surgery has to be considered individually. Like our meds, not all people will profit from it. Some have been seizure free since their lobect(Dana, aka clarinet2), some will have a strong decrease, while others may have little or no positive changes. A lot will depend on the starting area of the seizure, can that focal point be removed without harming other areas of the brain or functions, is there more than one area of the brain that is generating seizure activity,etc.

The docs I have listened to would like try the meds before they consider the surgery(or the VNS). It will always be the patients choice. Is the person happy with the medication or is he/she seeking something else that the meds have failed to do?

I feel that if the doc feels you are a good candidate that you should follow through. I've had wonderful medical care since my first in '75 and have never been mislead by any of them.

A question to consider is "are you comfortable with your doc's suggestions/recommendations?"

angie
 
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meredithc18 responded:
Haylen,
I had a one-inch scar removed from my right temporal lobe on June 1, 2010 and it was the best thing I ever did! I spent seven years on the "roller coaster" ride of ep. meds/multiple stays in the EMU, etc. trying to find the right combo to control my seizures. I was the perfect candidate for surgery though, I didn't even have to have the grids put on, skipped right over stage two. I was also able to have the MEG test done before surgery so the Dr.'s could pinpoint exactly where the sz were coming from.
I am still taking a low dose of ep. meds(topamax) but have not had a sz like before in over a year and a half..........and finally pregnant!
I think surgery was the best thing, not for all, but the best thing for me.
 
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saxofone1 replied to meredithc18's response:
Hi M18,

CONGRATS ON YOUR PREGANCY!!!! And may the seizure activity remain in the past.

May your baby, or babies, be healthy and happy. Best wishes on your new family. Due date?

angie
 
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clarinet2 responded:
Haylen, I agree that the option for surgery is overlooked quite often because the term brain surgery seems to frighten patients especially after reading some of the responses to this discussion. Physicians also want their patient to prepared to make decisions.

Yes medications are the very first option, but with today's variety of medications the specialists usually know which medication or medications to start with to see how the patient responds. The patient may need to have medications adjusted to their body's response. Some can be controlled with medications and some do not.

Brain surgery is much more precise and will NOT be done unless the doctors pinpoint the starting point of the seizures. My seizures were coming from multiple sides of the brain, but the majority were starting from a small area which had scar tissue built up and it was on the side of my brain which was not my dominent side controlling major things such as my speach, vision, hearing, memory or any comprehension.

I just wanted to share the facts that I researched by contacting two neurological specialists. The VNS is the alternate method of treatment if medications are not working AND if the patient is not
a candidate for surgery. The doctor's decide if surgery is safe or the VNS would be more effective. From there it is up to the patient or the patient's family to make the final decison what they want done.

Every person I have met that has the VNS was not a candidate for brain surgery and medications were not helping enough so that is why it was implanted.

Not everyone has auras prior to their seizures to swipe the magnet over the VNS. That is why the VNS has to be adjusted for some patients with no auras.

Since my surgery I have gone from 15-20 seizures per month to zero. My medications have been decreased to only two medications per day and I will never downgrade surgery, VNS or the technology that we have been blessed with.

We need to educate society and patients that every person's body is different and what happens to one person with medications, surgery or the VNS can be completely different to another person.
 
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saxofone1 responded:
Hi Haylen,

Wow, today, 4/5/12, marks 10 years since the grids were placed prior to my lobectomy. Time has sure passed.

This is a crazy day for me 'cause it is also my 51st birthday!! Grid surgery scheduled on my 41st birthday. That had to be a good sign.

I have no regrets about any of it. As time has passed, I have been able to help many understand the procedures of grid placement as well as the actual lobectomy. It has been an experience that has had many positive outcomes.

What did the med team say?

"Have you changed your mind, Angie?"

"Nah, let's do it!!!"

Everyone have a good day.

angie
 
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Haylen_WebMD_Staff replied to saxofone1's response:
Happy Belated Birthday! What did you do to celebrate?

I'm so glad you had a positive experience with your surgery and no regrets - you have 2 things to celebrate this year

H
 
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saxofone1 replied to Haylen_WebMD_Staff's response:
I had a wonderful birthday!!! It was a quiet one. Starbucks treated me to a frap and a breakfast sandwich!!

I cont to celebrate on Friday, the 6th, with a nice breakfast and a movie( The Hunger Games) with my sweetheart.

You'll love this one, Haylen. A friend who I've known since '66 always forgets my birthday. So I went out and selected a "sorry I missed your birthday" card for her. I addressed it to myself, put a stamp on it, and sent it to her in one of those padded envelopes. Let's see if I get back this week or next year.

Tommorrow, April 12, will make it 10 years since the actual lobectomy was done in Mpls. Clarinet2(dana) sent me a letter in regards to it and all that I have been through since then. She is a wonderful person and a great friend to me. The docs did a good thing putting us together.

Thanks for the birthday wishes.

angie
 
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dancer86442 replied to saxofone1's response:
Hi Angie,

Happy B'Day. Happy Post-Surgery celebration. BTW: 12th is Thursday. I'll send Hugs & Love to get you thru to your Special Day. (X) (X) Love Candi
 
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saxofone1 replied to dancer86442's response:
Thanks candi,

You must have been reading my mind. I was going to submit a correction. As usual, you are on top of things.

Thanks for birthday wishes. Have a good nite's rest.

angie
 
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saxofone1 replied to Haylen_WebMD_Staff's response:
Hi Haylen, Candi, and everyone,

Haylen, my friend of 46 yrs who always forgets my birthday sent the card back. That's good timing for her. Maybe I'll help her again next year.

It's beautiful here in Vegas today. Everyone have a good weeek.

love,
angie


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