Epilepsy Talk

Brain Surgery – Questions to Prepare Yourself | April 12, 2012

How many times have you heard: “Well, it isn’t exactly brain surgery.” Well this time it is. And it’s your brain.

It’s a scary trip into the unknown. Thoughts are swirling around in your head: What will happen to me? Is this the right thing to do? Is this really the best surgeon for the job? What if it doesn’t work? Maybe I should put it off…

It’s really hard to be prepared for something as radical as brain surgery – either physically or emotionally. That’s why it’s important to gather all the information you can, before hand.

Remember: Knowledge is power.

Here some things to consider and ask your neurologist/neurosurgeon team before surgery.

What is the surgeon’s experience with this procedure?

Once you are able to see the surgeon, ask as many questions as you can think of. (You might want to write the questions down first to organize your thoughts and get every aspect covered.)

And consider: Does the surgeon answer your questions in a way you can easily understand? (No medical mumbo jumbo, please!)

Do they rush through the consultation, or give you the time you need? Bedside manner isn’t necessarily an indication of surgical skill, but it is an indication of whether or not the surgeon will give you the time and answers you need to feel secure in your choice.

When it comes to surgical skill, questions like “how many times have you performed this procedure?” are helpful. A surgeon should have performed your procedure enough times to be accomplished and confident in their ability to do it flawlessly.

Also, think about asking whether or not you can contact previous patients who’ve gone through similar surgeries, as references. The surgeon’s answers may also give you clues about his or her level of experience.

What about a second opinion?

Getting a second opinion is very reasonable for surgery. Especially surgery as serious as brain surgery! This shouldn’t be a problem with the first doctor. In fact, he/she may encourage you.

Second opinions can reassure anxious patients (and family members) and make the whole process easier for all involved.

The second surgeon may agree with the initial assessment and recommend surgery. However, there may be alternatives presented that make it worth your time and energy to seek them out.

What is the reason that this procedure is necessary at this time?

Is the procedure being done to relieve pain, diagnose a condition, or rectify an existing problem? Must the procedure be performed immediately?

What are the options if this procedure is not done?

What are the nonsurgical or medical treatments available to help the condition? (Like a VNS.) What will/might happen if the operation is not done?

If the operation is not done at this time, can it be done later? What are the consequences if the procedure is postponed or delayed?

Is this procedure covered by my insurance plan?

Will physician’s fees, associated costs, hospital services, rehabilitation programs, and pain medications be covered by your insurance plan?

Sometimes the doctor’s office staff can be very helpful in answering these questions. If not, call the insurance company directly with your questions.

If you are paying for the surgery yourself, find out the physician’s fees. Does the surgeon provide a clear idea of the fees or do they have a general idea that may or may not be accurate?

The price of your surgery, including operating room costs, lab work, anesthesia and all other fees, should be clear.

What is the anticipated outcome of the procedure?

What exactly are the expected benefits of doing the surgery? How likely is it that these benefits will result from the procedure?

What are the specific risks that this brain surgery involves?

Although the chances of a serious complication are usually low with most brain surgeries, surgery of any type carries risks.

So it makes sense to ask: What are the problems, complications, or conditions that are the risks of the surgery? How common are these complications and the possibility of a negative outcome?

Also, you should seriously consider having a discussion with family members about your wishes in the event something unexpected occurs and you are not able to make decisions for yourself.

Ideally, all patients having surgery of any kind should have a Living Will or Advance Directive completed prior to undergoing the surgical procedure. Actually, everyone should have an advance directive, no matter what their age or medical condition.

What is the recovery process after this procedure?

Brain surgery varies in terms of wound recovery time and length of rehabilitation programs. It’s very important for you to know the long-term program ahead of time for the best planning. Will pain control medications be necessary?

Also, this should be broken down into the time spent in the hospital for recovery and the time spent in recovery at home. Many people who undergo brain surgery also need a caregiver. It’s important to plan ahead for the time you will need assistance at home.

What happens after I am discharged?

Most patients recover quickly after brain tumor surgery and are able to leave the hospital after only a few days. Depending upon your functional abilities after your surgery, physical therapists and occupational therapists will evaluate you.

In some cases, a short stay at a rehabilitation hospital near your home may be recommended.

What are the next steps?

Obviously, surgery does not end once you leave the operating room. A follow-up appointment with your neurosurgeon is vital to discuss the surgery’s outcome, whether further surgery will be necessary and outline the next steps.

Having a well-qualified team in place for post-operative care is crucial. It’s imperative to know what needs to be done after your brain surgery.

Find out which doctor(s) you will be seeing after your discharge for the treatment of your brain tumor. Who can you call if you have any questions or unanticipated post-operative issues?

A good brain surgeon and surgical team will have all these details in place well before the day of your operation.

Also, make sure you understand the discharge instructions. If you have any questions or concerns, now’s the time to speak up.

When to call the surgeon with concerns…

While recovering at home, it is important to know when to notify the surgeon or surgical team of any complications that arise after surgery. Find out who your main contact is. (Even get their mobile phone number if you feel it’s necessary!)

The following signs and symptoms are warnings of possible complications and should be reported immediately: seizure, severe headache, worsening neurological problems, fever or chills, swelling of the ankles, bleeding or bruising, severe nausea or vomiting, and skin rash.

I know it sounds scary. But then again, it could change the quality of your life for the better. Forever.

Here’s a link to the 2012 List of GOOD Neurologists…Epileptologists …Neurosurgeons…and Pediatric Doctors, based on the experiences of website members who have had positive personal experiences with their docs over the years.


Also, here’s the annual rating by the U.S. News and World Report’s of 2012 Best Neurology & Neurosurgery Hospitals in the U.S.


Some more articles of interest:

Epilepsy and Brain Surgery — The Basics  https://epilepsytalk.com/2013/05/22/epilepsy-and-brain-surgery-the-basics-2/

Children’s Brain Surgery…Preparing YOUR Child…https://epilepsytalk.com/2012/04/22/preparing-your-child-for-brain-surgery/

The Trouble with AEDs  https://epilepsytalk.com/?s=the+trouble+with+AEDs

Vagus Nerve Stimulation…Is it for YOU?  https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%E2%80%A6is-it-for-you/

The Gamma Knife — Non Invasive Surgery  https://epilepsytalk.com/2012/09/12/the-gamma-knife-non-invasive-surgery/

Laser Surgery — New Breakthrough Epilepsy Treatment!  https://epilepsytalk.com/2011/07/19/breakthrough-surgery-for-those-with-epilepsy/

Responsive Neurostimulation (RNS) Shown to Reduce “Untreatable” Seizures  https://epilepsytalk.com/2013/05/05/responsive-neurostimulation-rns-shown-to-reduce-untreatable-seizures-3/

Trigeminal Nerve Stimulation — A Breakthrough Technology Reducing Seizures by Up to 66%   https://epilepsytalk.com/2013/03/24/trigeminal-nerve-stimulation-a-breakthrough-technology-reducing-seizures-by-up-to-66/

TNS vs. VNS – NO SURGERY!  https://epilepsytalk.com/2013/04/01/tns-vs-vns-no-surgery/

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  1. Hi Phylis,

    Brain surgery in todays world is quite advanced. I know first hand. I had a brain tumor just a hair bigger then a baseball removed. 2 days after diagnoses, i was in the operating room. Everything went great, had to sign the usual, what if you die scenario paperwork, before surgery. 2 days after surgery i was back home and 6 weeks after surgery, i was suppose to go back to work, but took 2 more weeks off since i didn’t think it was appropriate at the time, since the wounds hadn’t healed all the way yet. This was a worst case surgery since if i didn’t have it immediately i could of went into a coma.

    Well 5 weeks after i had the surgery, signs of seizures happening, they started small, only in my finger tips. Then as weeks past it went to more fingers, then more weeks past then it went to my hand, then forearm then the hole hand, then the movements and jerks started. Then last Oct and Dec, i had full blown seizures that lasted for 4+ min, but i did not loose concousness. These 2 beat me up pretty badly, my doc put me on the emergency Ativan pill that when i feel a seizure coming on, i put one under my tongue and pray that it stops the seizure. So far so good, i’ve had 4 seizures and each time i took the pill, the seizure did not pass my forearm.

    Before i was diagnosed, i had not idea what seizures were, I had a grand mall at work, that was the reason i went into the hospital. When i was there, i didn’t know it was a seizure, i thought it was a faint spell. Now i know all about seizures and i must say, it’s the worst thing i’ve ever experienced. It’s like the devil comes for a visit on a regular basis. 🙂 Just putting some leviaty in here. 🙂 Hope all here are doing well. One things for sure i’d rather have seizures then be six feet under.



    Comment by zolt — April 12, 2012 @ 7:23 PM

  2. Zolt, were you put on any maintenance meds? I know that after a botched surgery 13 years ago, Charlie had a very successful surgery at NYU.

    He IS on maintenance meds (I think it’s pheno and something else) and he goes every 6 months for a check-up and EEG. In 3 years, he has never had another seizure.

    Of course, I don’t know what kind of brain surgery he had, and no two people are alike, but would you consider a consult for a second opinion?

    I don’t mean to sound discouraging, but I don’t think this should be the outcome of a “successful” surgery.


    Comment by Phylis Feiner Johnson — April 12, 2012 @ 8:01 PM

  3. Hi Phylis,

    My brain surgery was to remove a large brain tumor that sat over my motor and sensory strip. So this surgery was not for seizure. Seizures can be an after affect of having a tumor removed and in my case it’s a reality. After reading on here that there are surgeries for seizures, i asked my Doc if surgery would be an option for the seizures I have and he said no. The surgery was a complete success since they where able to remove the tumor and there was no visible evidence of any remaining tumor left. My surgery was 6yrs ago, and every 6 months i have an mri and so far, knock on wood or formica, there has not been any regrowth since. So i see it as a total success.

    Right now i’m on Gabapentin medication, i take 1800mg/day. I’ve been on the roller coaster of seizure meds and i have been on Keppra, Dilantin, Lamotrigine, and none have really been able to control my seizures and i believe that some of these medicines may have made the seizures worse. I was on Lamotrigine most all of last year, until the 2 big seizures i had in oct and dec.

    Hope that answers your question.



    Comment by zolt — April 12, 2012 @ 8:47 PM

    • Well, in a way, you were one of the lucky ones. My friend had surgery to remove a benign tumor and it ended up with octopus tendrils that left her pretty brainless…or at least, without cognitive functions. She spent the next year and all of her money at Kessler Institute and at the end she was able to walk, toilet herself, say “boy” and “dog.”

      And of course, now she has seizures.

      But she’s come an incredible distance. President of the Brain Injury Group in Charleston, Outreach Coordinator of the SCMC and all kinds of other accomplishments. She sure has grit and I admire her immensely.

      As for the meds, try to be patient. (Easy for me to say!) There are so many meds out there it’s like a crap shoot. And I know it sure took me a long time to find my “magical med mix.”


      Comment by Phylis Feiner Johnson — April 12, 2012 @ 11:49 PM

    How did you get to READ my mind?

    For more than 10 years, I’ve been asking myself the same QUESTIONS, to ONLY end-up wondering, if the risk is worth the “UNPREDICTABLE OUTCOME” of the fatal-undertaking, brain surgery?

    Which one would be BETTER to cope & live with, the known DEMON (seizures) or the UNKNOWN “holly-remedy”,,, brain Surgery?

    I bet, too many of us are still asking,,,

    1. What are the odds for brain-surgery to work & stop seizures?


    Just like heart-surgery & heart transplants, there HAD to be “NATIONAL CONSENSUS” that can ASSURE & REASSURE patients that “BRAIN SURGERY IS BETTER ALTERNATIVE”.
    Anything-less is shooting in the dark.

    Thanks for a very interesting & HIGHLY DEBATABLE article. I’m sure this article will touch many lives.

    PHYLIS, Keep up the great-crusade, fighting epilepsy.


    Comment by Ghebre — April 12, 2012 @ 9:28 PM

    • Well, I have to say invasive surgery would be my very last choice. Yet, I’ve seen some people have it and improve immensely. (Charlie)

      My best friend was turned into a cognitive vegetable.

      There’s a lady in our support group who has had numerous surgeries, but to no avail. But she has such awful epilepsy, that it was worth the chance.

      David and Susan Axelrod (Obama’s Advisor and founders of C.A.R.E.) have a daughter whose had every treatment in the book and now lives in an institution.

      I know others like that too…

      So the question is: Where do you draw the line?
      And how desperate are you?


      Comment by Phylis Feiner Johnson — April 12, 2012 @ 11:58 PM

  5. Hi Y’all
    All your stories sound familiar. I was a Drug guinea pig most of my life (50 years) I’m 54 now. When I look in the med books, I was, at one time or another, on almost everything on the list. None of my doctors during those years told me about alternative treatments. When I was 16 yrs old I had a brain cyst removed hoping that would stop my seizures. It didnt. That was back in the dark ages of the early 70’s though. I was close to having a VNS implanted in 2009, because my Neuro told me “It’s a no-brainer” and that was what I needed to stop my seizures and there was no surgery available. I got scared away from that “solution” by the company that made them, cybertronics (spelling?). I was given a hard sell with people calling my house asking me when I was going to get it done. I’ve had softer sells from used car dealers. It’s a good thing they ticked me off because I put it off. It was then that I was introduced to Orrin Devinsky and his Epilepsy and Neurology Group at NYU. Awesome people !!!! Dr Pacia from that group asked me why no one has ever tried to help me before and I was a good candidate for a surgery. I guess my previous doctors were so busy pushing pills that they forgot I was a person with Epilepsy that should have had all the cards laid out before him.

    After a boatload of tests to be sure I was a candidate for surgery, I had it done in 2009 by Dr. Werner Doyle at NYU. PTL I’ve been seizure free ever since. I know it’s not for everyone, but if you’re a candidate and have a good Epilesy group taking care of you, I wholeheartedly recommend it. There’s a slight chance seizure’s may return, but everyday without a seizure I will cherish. I know that’s a lot of info, but I’m so thankful that someone finally gave me hope that I have to share.


    Comment by Charlie — April 13, 2012 @ 1:48 AM

    • Charlie, you are a true inspiration. Not only are you seizure free, you now dedicate yourself to helping others, started your own epilepsy support group and become a true advocate.

      But I forget, what kind of “maintenance” are you on? Docs, visits, meds, etc. I think that would help some people who have had “semi-successful” surgeries.


      Comment by Phylis Feiner Johnson — April 13, 2012 @ 3:43 PM

      • The only drugs I’m taking is 600 mg Lamictal and 90 mg of phenobarbitol. Whenever i go see him, we talk about coming off some, but I concur that we leave well enough alone. I was taking 6 med’s before I met Dr Pacia and he took me off 4 of them.
        I go to NYC twice a year to see him. If he ever wanted to cut me down to once a year I’d tell him no way. I look forward to my visit’s so I can keep thanking him for changing my life. If only I had known about an alternative to drugs,sooner, I may have been blessed many more year’s without seizures


        Comment by Charlie — April 13, 2012 @ 10:39 PM

      • Charlie, what did they do to cut you down off so many meds? Was it the right dr(like Dr. Graham) or was something else done? That is so awesome to hear I spent so many years on too many meds(didn’t know if I was coming or going at times) and glad to hear you have found the right mix to keep the seizures away. I had right temporal lobectomy and have been seizure free ever since, but most of the anti-epileptic drugs they gave me(anything that was out there) pheno, tegretol, dilantin, depakote, depakene, micilin, etc-I either had an adverse reaction, still had too many seizures, or severe allergic reaction…so I am glad that you have had such success. Don’t mess with a good thing, however, did the doc say anything about as your body gets older whether or not the meds would have to be changed/adjusted? Best of luck, Jeannie


        Comment by Jeannie — April 14, 2012 @ 12:52 AM

    • As they say Charlie,,,
      “If it is NOT broken, don’t fix it”.

      I would say,,, Keeping your medication as is, CONTROLLING your seizures, is far more better than taking chances for unknown potential “RISK”, by dropping any of the medications.



      Comment by Ghebre — April 14, 2012 @ 8:41 PM

  6. That is so awesome to hear. Usually people I hear about or talk to, their surgery wasn’t successful and they still have seizures, sometimes worse than before. I have been seizure free since August 15, 1991..and count everyday as a blessing.the three children I have, that never would have with the seizures my Godsends..

    I call the most awesome neurologist in the world, Dr. Thomas Graham, Paoli/Bryn Mawr, PA.every anniversary to say thank you…He who recommended me to Graduate Hospital(now Thomas Jefferson)after his partner at the time, just wanted to try 1000 different medications, everytime I turned around, with no decrease of seizure activity–even WITH the medications, constant blood levels and MRIs/EEGs. At Graduate Hospital, I met Dr. Jacki French and Dr. Michael O’Connor and his remarkable team of amazing doctors….4 mths later(after 18 long, agonizing years of 7-9 seizures a day–with every attempt on every drug out there, only to have minor-major side effects) the words,” you are a perfect candidate” were the ones I had wanted to hear for sooo long.

    At the time, I was 18 and would have jumped off the roof if it meant not having seizures, but aside from the enormous amt of pre-testing they had to do, including what I think was called a WADA test where they insert a catheter through your groin area up into the rest of your body to make sure everything inside is working the way it should—I didn’t care about the “possible side effects of the surgery, I wanted to take the leap and have the surgery done…Now 21 years later, I still have not had any seizures, three C-sections, no medications, and going to school(a forever process)so I can make a difference in women’s lives who have been through/going through what I went through with the seizures…I am majoring in psychology and criminal justice–with three beautiful, HEALTHY, inquisitive, smart children. After all the seizures, teasing, questions on a regular basis….I am 21 years SEIZURE-FREE and a COMPLETE ADVOCATE of the epilepsy surgery. I would whole-heartedly recommend if you are told you are a candidate, take the leap of faith and have it done. Life is too short, too priceless not to take the chance….God Bless.


    Comment by Jeannie — April 13, 2012 @ 2:28 AM

    • YAY Tom Graham! He is my hero and saved my life.

      And you Jeannie are one courageous and generous woman.

      Like Charlie, giving back and helping others through their ordeal.

      CONGRATULATIONS. And hats off to you!


      Comment by Phylis Feiner Johnson — April 13, 2012 @ 3:52 PM

      • Hi Phylis, Did you have Dr. Graham as a doctor?
        He is an awesome doc and life saver. I would probably still be taking useless medication if it had been up to the other dr I had seen before Dr. Graham.


        Comment by Jeannie — April 13, 2012 @ 5:02 PM

    • Jeannie,
      Thank you for sharing your beautiful uplifting & inspiring story.
      You already made feel,,, buy airplane ticket, visit your Neurologist & check out with your Surgeon.

      Wishing you all the best.


      Comment by Ghebre — April 13, 2012 @ 9:48 PM

      • That’s an awesome idea..do you know what side your seizure activity is on? Where do you live? Maybe Dr. Graham could recommend someone where you live. my email: sunshinej716@yahoo.com if you ever want/need to talk.


        Comment by Jeannie — April 13, 2012 @ 10:15 PM

      • Jeannie,

        After 15 years going through, a couple of Neurologists & staying for 10 days at local PRESTIGIOUS UNIVERSITY videotaping my TWO GRAND MAL SEIZURES IN THREE DAYS & recording my seizures on EEG & MRI computers for “brain-surgery”,,,,,,

        I still have NO idea, which side of my brain is “DEFECTIVE”, causing my grand mal seizures.

        It is this frustrating kangaroo-court that makes me wonder,,,


        I’m still NOT sure.

        Thanks for caring to share your experience.
        It is good to know, there is hope in a very hopeless world.



        Comment by Ghebre — April 14, 2012 @ 9:01 PM

  7. Seeking remedy should NOT be bartering “potential-risks”.

    Congratulations Charlie.
    Good to know, there are practically convincing achievements in this field.

    Hopefully, one of these days I get to write as uplifting & inspiring comments as yours, surgery done & no seizures.

    Compared to the “FATAL” risk, let’s hope the “health” industry proves higher ASSURANCE RATE for brain-surgery, just like heart-surgery,,, etc.

    Anything-less seems totally scary to contemplate & imagine.

    Wishing you all the best.


    Comment by Ghebre — April 13, 2012 @ 3:52 AM

    • Well Ghebre, I know this sounds real trite, but I think it’s a matter of checks and balances.

      Yes, I agree with you that brain surgery shouldn’t be so risky, but so are many other surgeries like heart surgery and back surgery. (Back surgery absolutely ruined my father’s life.)


      Comment by Phylis Feiner Johnson — April 13, 2012 @ 3:57 PM

      • Phylis,
        Life is full of risks, therefore, taking risks is NOT the problem.

        The question people ALWAYS have to live with is,

        Therefore,,, If my mechanic can NOT guarantee to fix my car, he has NO business tearing down the engine of my car.

        If my electrician can NOT guarantee to fix the electrical problem of my house, he has NO business tearing down the walls of my house.

        If my roofer can NOT guarantee to fix the leak in my house, he has no business to climb the ladder & tear down the tiles of my house roof.

        If the hospital Physician can NOT guarantee the delivery of my son, he has no business performing C-Section on my pregnant wife.

        (Sadly, I know of two young immigrant-women, who died from C-Section internal-bleeding, trying to deliver babies, losing their lives & their unborn children all at once, while for CENTURIES, their mothers, grandmothers, neighbors, families & friends, helped each-other DELIVERING babies at home with out C-Section, in their small remote villages).

        If my heart or brain Surgeon can NOT guarantee the outcome of his PERFORMANCE, none of them have the RIGHT to tear down my chest or crack my skull in half, to “PRACTICE” with my heart or brain)


        Surgery is NOT some high-school science project.
        Therefore, NO ONE should be allowed to GAMBLE with human lives.

        As much as, I EXPECT SATISFYING OUTCOME from my mechanic, electrician & roofer, I expect far more HIGHER SATISFYING outcome from my brain & heart surgeon.

        To hopefully lay down in operation room, entrusting your whole-life to UNACCOUNTABLE “health-professionals”, WHO CAN NOT GUARANTEE or HELD ACCOUNTABLE TO THE OUTCOME OF THEIR PROFESSIONAL PERFORMANCE (surgery), ain’t any different than to seeking remedy from VOODOO DOCTORS.

        Sure, seizures are nightmares.
        Therefore, the desperation, checks & balances to beat seizures & to find HEALING had to have far more BETTER CHANCES than just laying down in operating room for NOTHING MORE than another exercise in BARTERING UNPREDICTABLE RISKS.

        Patients NEED to require more, than they require from their car mechanic.

        I’m sorry, to the very unfortunate predicament of your grandfather.

        In a “SPACE-AGE”, there had to be a better way to get things done right.


        Comment by Ghebre — April 13, 2012 @ 9:35 PM

  8. Phylis,

    What can I say? After 40 years of seizures with a lot of them happening in the wrong place at the wrong time, I needed a shot a t better or total control. I’ve never seen this episode again but one day on the Discovery Channel, there’s a woman with the problems I’m having and she’s decided surgery is the answer. After I watched, I felt surgery was my best shot.

    I had to convince my epileptologist because he felt I had good control of my seizures. I told him better or total control was what I wanted. He gave me these statistics: 95% chance I’d see better control, 85% chance for full control on meds, 70% chance of total control off meds. 5 1/2 years after my surgery I find I’m part of that 70%.

    Surgery is a risk but if you’ve experienced setbacks for a long, long time, you’re ready to take that risk…and you could benefit big-time from that risk.


    Comment by Ed Lugge — April 13, 2012 @ 1:33 PM

    • Wow Ed, those are scary numbers. I don’t know if I would have the courage that you did.

      In fact, I’m such a wimp, I probably wouldn’t. 😉

      But you had the determination and it did pay off for you. I don’t know if I could have gone in, knowing the risk.

      But you did, and you were “rewarded” for your convictions.

      HOORAY for you!


      Comment by Phylis Feiner Johnson — April 13, 2012 @ 4:04 PM

  9. Iwas told in the 70’s they found my abnormality and I would be under control. I thought great! Preparing for surgery the Resident noted I had a respiratory problem and they administered Vancomycin during surgery. I went into anaphylaxis. They rescheduled 2 months later.

    When they did the surgery I noted I still had seizures but was told it was because of the swelling of the surgery. I had more auras, and had more seizures.

    In the 90’s the Neurologist did an MRI and noted the abnormality in another location and suggested a second surgery, but warned me it may not completely control seizures but lessen them because it was close to my speech area. I had the surgery. I had trouble w/ names and numbers, and recall.

    When I moved to the East coast I had another MRI and the found the actual abnormality was below lobes in the ventricles and it was a birth defect. It was never in the temporal lobe where the other doctors felt. This is flustering! I still have seizures, God only gives us what we can handle!


    Comment by Toni Robison — April 13, 2012 @ 3:35 PM

    • Oh Toni, what a sad story. Did they do the WADA Test (Intracateroid Sodium Ambobarbital Test) – to identify the areas of your brain that controls speech and memory functions?

      During this pre-operative procedure, an angiogram of the brain is taken (an X-ray of the brain’s blood vessels). A drug is then injected into you that anesthetizes one side of the brain. You’re asked to respond to a series of memory and speech-related tests. From this test, the neurosurgical team can determine where the areas of the brain that control speech and memory are located, and avoid those areas during surgery.


      Comment by Phylis Feiner Johnson — April 13, 2012 @ 4:11 PM

  10. Hi Everyone,

    I have heard of some people who have had successful brain surgeries.

    It is not for me, though. I turned down the VNS, even.



    Comment by Ruth Brown — April 13, 2012 @ 9:10 PM

    • Hi Ruth, good to hear from you.
      The thing that sold me on getting my Surgery was that I had INCREDIBLE peace about it. All the Dr’s at NYU were so caring, compassionate, and the clock didn’t matter when we talked. I talked with my surgeon for 2 hours. He answered every question I had. He didn’t try to Candy coat anything. Unless you have peace about any decision you make I wouldn’t do anything either. 50 years of seizures and a Good neurolgist is what got me started on this path to being seizure free. I thank God every day for His leading and the peace I recieved.


      Comment by Charlie — April 14, 2012 @ 5:34 PM

      • Ruth,
        Brain Surgery is a difficult and complicated dicision to make, if in fact you are lucky enough to have the option. It is not for everyone. But when it is and if it is successfull, it is a blessing. Truely offering a life changing oppurtunity as Charlie can attest too.


        Comment by phylisfeinerjohnson — April 14, 2012 @ 7:07 PM

      • Hi Ruth! I would have to say that the brain surgery I had(right temporal lobectomy) in 1991 was the smartest/happiest decision I have ever made in my life!! Dr Michael OConnor @ (Graduate Hospital) now Thomas Jefferson was so reassuring and caring. It may have helped that I was 18 and convinced that nothing would go wrong…you have to be at peace with your decision and comfortable with your choice. How often do you have your seizures? I think I got to the point I was tired of taking all these dif meds with no responses, still having 7-9/seizures a day and in high school–not exactly the social butterfly!! The surgery was a complete blessing to me!!
        If there is anything I can do please let me know…


        Comment by Jeannie — May 2, 2012 @ 6:16 PM

    • Hi Ruth,
      I would definitely have to agree with Phylis and attest that having the surgery is a difficult and complicated decision. However, being a person that on Aug 15th, I will be 21 years seizure free(completely with no medication) since I had a right temporal lobectomy and I don’t regret anything about my decision…I have 3 beautiful children-wouldn’t have happened with as many seizures or as much meds as I was on..my grades in school went from d’s and f’s to a 3.8 GPA and dean’s list in college(still going as I was my Masters and Doctorate).
      Yes, it’s scary, extremely scary-after all whether by lazer or having your head cut –6-7 inch(depending on where you are having surgery)yes, that’s scary–however, I couldn’t think about it that way, I had to think about the POSITIVES and for me at the time ANY CHANCE(which for me was good, but not definite) to not have seizures beat living everyday not knowing whether I was going to have 1, 5 or 10 seizures and see what other smart alec things people could come up with to tease me that day..

      I highly recommend having the surgery, if you trust your doctors(as I did Thomas Graham, Michael O’Connor and Jaqui French-now at Thomas Jefferson) you are a good candidate, then believe you can do it, be as positive going in as you can, and have faith like never before in your doctors…good luck and best wishes…working towards a world where no persons’ life is limited by Epilepsy


      Comment by Jeannie — April 15, 2012 @ 1:33 AM

      • In answer to your question Jeannie, yes, Tom Graham IS my neurologist. In fact, I’m waiting for a return call right now after a serious pattern of falling down and confusion, along with problems with my short term memory.

        That’s why I haven’t been on the site for a while.

        Please try to be patient with me.


        Comment by Phylis Feiner Johnson — April 17, 2012 @ 6:45 PM

      • Hi Ruth, no worries. I completely understand the ST memory thing. I still have a hard time with some short term memory. I really don’t remember much from my earlier years when I had seizures. Dr. Graham is a phenomenal dr and I hope all works out for you and he helps you as much as he did for me!! Give him my best. Jeannie


        Comment by Jeannie — April 17, 2012 @ 7:03 PM


    Breakthrough epilepsy procedure – NBC 2 Houston KPRC.wmv … stemcellofamerica.com …
    Published on Apr 10, 2012 by TexasChildrensVideo
    Video courtesy of NBC 2 Houston KPRC

    Breakthrough epilepsy procedure – The Early Show.wmv
    Published on Apr 10, 2012 by TexasChildrensVideo
    Video courtesy of CBS The Early Show


    Comment by Ghebre — April 14, 2012 @ 10:29 PM

  12. Awesome stories! I had to Google the info you shared, but it was well worth it. . I’m so happy to see people, especially young people, beat this ‘Scourge’. I’m thankful they didn’t have to wait 50 years like I did before they got treated. There’s always hope!


    Comment by Charlie — April 16, 2012 @ 2:30 PM

    • YES, Charlie,,,,

      Tears was pouring down my cheek, when I curiously started following the incredibly beautiful stories on,,, The Early Show.wmv
      Published on Apr 10, 2012 by TexasChildrensVideo
      Video courtesy of CBS The Early Show

      It’s just heart-warming to see how beautiful life can be.


      Comment by Ghebre — April 16, 2012 @ 10:50 PM

  13. YAY! I got an appointment with the Neurologist. (Jeanie it’s with Tom Graham. He said to Arthur that “it better be good!” LOL! We’re personal friends.)

    Probably an MRI and CAT SCAN will be next. I haven’t had one since the hospital…


    Comment by Phylis Feiner Johnson — April 17, 2012 @ 8:06 PM

    • He is one amazing, highly regarded neuro and I wouldn’t have the things/people/children/school…life, if it wasn’t for him….best of luck…let me know how it goes. I used to have more MRI’s CATS, EEGS and bloodwork then I even care to remember…but in the long run, he came through for me and changed my life forever. Good luck.. Hopefully he will have some concrete answers for you.


      Comment by Jeannie — April 17, 2012 @ 8:16 PM

  14. Oh and if you need ANYTHING, please let me know.


    Comment by Jeannie — April 17, 2012 @ 8:16 PM

    • THANKS! That’s what makes this website a “family.”


      Comment by Phylis Feiner Johnson — April 17, 2012 @ 9:28 PM

      • Phylis, I thought you might have better options/correspondence ideas to spread this around to those who may be interested:

        E-Race Epilepsy 5K Run & Walk
        E-Race Epilepsy 5K Run & Walk to benefit the KARE Foundation, a non-profit organization dedicated to raising awareness, support, and funds for Epilepsy. Join us at the Philadelphia Zoo this June! June 9th 2012
        Philadelphia, PA
        Run Starts 7:00 AM
        Walk Starts 8:15 AM
        Pre-Registration Ends May 19th! Its easy to sign up if you go to facebook: e-race epilepsy
        E-Race Epilepsy 2nd Annual 5K Run and Fun Walk


        Comment by Jeannie — April 18, 2012 @ 3:04 AM

      • Family? You aint kidding ! I call this site “Phylis’ little family. Thank you Phylis for all your hard work and the education you’ve given me and many others. Good luck with the Neuro.


        Comment by Charlie — April 18, 2012 @ 11:20 AM

  15. Charlie,

    Thanks for noting & pointing out that, many of us have gained a whole lot more from the very tireless, resourceful & very informative hard work, “Phyllis Little Family” has provided us, in coping & living with Epilepsy, more than I’ve gained from my Neurologists “visits”, 5 minutes of medical jargon until the next visit.

    CREDIT, WHERE CREDIT IS DUE & very deserving one.

    The Lady is phenomenal.

    Trust me Charlie, this site have saved my sanity.


    Comment by Ghebre — April 19, 2012 @ 12:20 AM

  16. Ironically, I just went to the neurologist (Jeannie, Tom remembers you well, but doesn’t take the credit for saving your life. Neither did he take the credit for saving mine!

    Spent time visiting, talking, etc. Came up with a diagnosis of “I don’t know.” So, I’ve already had 11 vials of blood taken, I have to take a psych-neurological test (to see if I’m crazy or just crazy with neurological damage!) EEG (you know how I feel about THEM) and an MRI. Whew. I’m gonna be a busy lady.

    And this all with a broken foot. I can’t wait to see what they do at the MRI! (Although it’s not my feet that are being imaged.)

    Stay tuned…


    Comment by Phylis Feiner Johnson — April 19, 2012 @ 7:39 PM

    • Don’t worry, We’ll all be tuned into what goes on with our friend! Good luck and hang in there !


      Comment by Charlie — April 20, 2012 @ 12:55 AM

    • Hey,,, We have come a long way this far.


      It can NOT get worst than where we have been.


      Comment by Ghebre — April 20, 2012 @ 1:48 AM

    • Hi Phylis, sorry going batty trying to get ready for our first Girl Scouts trip to the Dude Ranch tomorrow-Sun. What exactly IS “I don’t know??” So sorry you have to have more EEG’s/MRI and blood work(yuk!)–they shouldn’t have a problem with your broken foot(especially if they have the open one where you’re going)
      So, tell me when they did the psych tests, did you tell them you saw pretty butterflies and things off the mickey d’s menu!! :o) OR just tell them you saw another unnecessary, repetitive medical bill–dumb jokes is how I try and make light of all this–and working on my psych/criminal j. major-I have to —-I really wish Dr. G would find some answers for you—and that there were more dr’s out there that had CONCRETE solutions…..
      Dr. G is so awesome and sweet–and obviously very humble–:o) I will always remember him(100’s of times/year/month etc-anniversaries) and all he “saved” me from(after certain others would have just continued seeing/prescribing)…sorry, but I truly believe HE did start the process that changed my life forever–referring me to Dr. French and the amazing neurology team who did the surgery..and I hope someday soon that more/all people with seizures/Epilepsy would be offered those same opportunities to have answers to better outcomes for their futures. Please keep me updated I will STILL be checking email, as long as I can get a connection in the boonies…:o) aka-upstate NY..lol–keep smiling!!


      Comment by Jeannie — April 20, 2012 @ 4:16 AM

      • Hi Jeannie,
        You’re singing my song, only my beloved team is at NYU. Isn’t it amazing how thankful we become for some Dr’s. and other’s need to be thrown out of medicine. I too think about Doc Doyle and his compassion and skill that set me on this course to being seizure free. I thank God for the whole team. I live out East on Long Island, and for the most part, our Neuro’s are clueless unless it means more drugs They’re real good at pushing them Though! my breakthrough came when I stopped jerking around with the pill pusher’s and met Orrin Devinsky at NYU. I too pray for this scourge called Epilepsy to be wiped off the face of the planet. I can’t imagine being in another country and having no access to any kind of treatments and seizing every day, not even knowing what’s happening. We are truly blessed. I’m privileged to be in a support group where I can share my experiences and maybe meet another person who may not even know that surgery is a possibility.


        Comment by Charlie — April 20, 2012 @ 11:47 AM

  17. Tests span on till June 24th. 😦

    First is the MRI…next is the Orthopedist return visit… then it’s the Psych-Neuro Test.

    I’m not sure when the EEG is, Arthur is making and keeping track of my appointments. He’s just been wonderful. Lucky me! 🙂

    My one complaint is that I’ll have to drag along this cast to the NYU epilepsy seminar. (I’ve already lost a pound dragging this thing around!!)

    But at least, I’ll be able to see Orrin Devinsky who is, as Charlie says, brilliant, very human and a prince of a man!


    Comment by Phylis Feiner Johnson — April 20, 2012 @ 3:55 PM

  18. Phylis, hope you are doing well! Had a great time with the girls @ the Dude Ranch last weekend. Happens to also be the weekend, I decided to quit smoking once again–this is attempt # 7 since 2000. I quit but then I have severe panic attacks, tremors, shakes and really worried about the surgery—yes, I realize its been 20yrs, however, I smoked before the surgery and after so I have never been cigarette free since the surgery and concerned about what. if any side effects theere will be—have had really difficult insomnia for 5 of the past 8 days—Any suggestions to calm down the insomnia and shakes? Hope you are doing well.
    Headaches are pounding…


    Comment by Jeannie — April 30, 2012 @ 8:47 PM

  19. What you’re possibly suffering from is withdrawal.

    Nicotine is both a stimulant and a depressant to the central nervous system. The nicotine in cigarettes acts on receptors for the excitatory neurotransmitter acetylcholine in the brain, which increases neuronal firing.

    As for the panic attacks, I’m sure there are tons of solutions, but here are the ones that work best for me.

    1. Deep breathing. I breath in through my nostrils and hold my breath for ten seconds (although, some people do it for 5 seconds) and then exhale to the count of ten through pursed lips. (Sort of like blowing out a candle, as Candi so cleverly put it.) The beauty of it is that you can do it any time, any where, and forever long it takes when that nasty panic starts taking over.

    2. Visualization. I think of a particular happy experience (or two) and sort of let it take over my body. Like watching the waves crash. Or eating a lobster roll in Maine.

    3. Reading. It’s a great escape (if you can concentrate) and I love going to other worlds and seeing what other people do. (It’s kind of a vicarious thing!)

    4. Music. Sometimes relaxing music (my favorites are new age artists like George Winston and Liz Story) can calm me and take away the jitters. And I play it very softly in my bedroom to lull me to sleep.

    5. Walking a few miles or so. It helps take the edge off the stress and for me it’s mind cleansing and physically relaxing.

    As for the trembling and shakes, I’m in the same boat. If you figure out a solution, TELL ME! 😉


    Comment by Phylis Feiner Johnson — April 30, 2012 @ 11:14 PM

    • Thanks so much for all the great ideas! I am still having trouble sitting still for any extended period of time(then again I have a 4yr old) but the relaxation sounds wonderful
      –I can’t wait to get into the few great books I have here!! Sept, I am going back to school(hopefully) and Sean may be starting kindy!! Music always has worked miracles with me as well, but like last night-I finally was able to fall asleep around 4:40 and up around 6:30–my mind won’t relax and when I am lying down, I have everything going through my head–no kidding, you name it, I think about it(worry) when I am stressed. Walking has helped me forget about why I have these symptoms to begin with..hopefully I can convince my children not to smoke so they don’t have to experience this as well!! Coffee, do you drink it? It my lifeline with my kids and school!!! That is obviously causing some of the shaking but I think the panic attacks are the definite source of the shaking-withdrawal really stinks!!! So does smoking, this is my 6th and hopefully LAST time attempting to quit!!!


      Comment by Jeannie — May 1, 2012 @ 1:39 AM

  20. Well, going back to school should definitely occupy your mind. Then of course, there’s the kids. (Who occupy your mind in a much different way!)

    As for not being able to go to sleep…do you try to keep the time you go to sleep consistent? Do you try to keep your bedroom a haven, rather than an outpost?

    Do you think a light sleep aid might be advisable? For example, I take a small dose of Klonopin which helps both anxiety and seizures.


    I go to sleep to soft music and when I have the panic/anxiety wake-ups eg. broken sleep patterns, I try to read, or listen to music (through headphones) and I find it helps lull me back to sleep. Especially reading. I often find myself waking up with a book by my side!

    Of course, like you, I wake up, staring up at the ceiling, worrying about zillions of things. That’s why reading works so well for me during those time-outs.


    Comment by Phylis Feiner Johnson — May 1, 2012 @ 2:24 PM

    • Phylis, are you sure you aren’t a mind reader among all those other job titles?? :o) My bedroom has the tv, radio, and when I’m awake I hear EVERY little thing!!

      (Except for when I am in school or when I was working nights–I don’t drink anything caffeinated after 8)–And without fail, we usually have one or both children awake at some point, at least once every few nights…4 yr old not nighttime trained yet, dreams, etc.
      I have been taking benadryl before bed which helps(usually) with the sleep. In between smoking–that was always my first choice–when someone else(ex) would criticize every other one (Music has always been my choice of relaxation techniques–Enya usually does the trick) The music helped a lot last night, still broken sleep: wake up, back to sleep, wake up.. so just going to keep trying….Love the book idea as well. Have a stack next to my bed for the very same thing. This is now going on day three cold turkey(without the patches that I have) wanted to see if I could do it without the crutch but the headaches/shakes/insomnia have to go!!! Have a great day!! Thanks for all the ideas!! :o)


      Comment by Jeannie — May 1, 2012 @ 8:04 PM

  21. As far as the patches go: be careful. Some nicotine preparations used to help people stop smoking can have a side effect of convulsions. So, if you’re thinking of using them, check out your smoking cessation program with your doc first.

    I used to use benadryl, but then it stopped working for me. Maybe my body built up a tolerance to it. (That can happen with any “drug”.) Or maybe my insomnia got worse.

    Yay Enya. But you do have to try Liz Story. Try “Solid Colors,” “Unaccountable Effect” and/or “My Foolish Heart”.


    Has all kinds of Liz Story music that you can preview or download.


    Comment by Phylis Feiner Johnson — May 1, 2012 @ 8:43 PM

  22. Good info there. Thanks. Back to Brain Surgery though… Is there any set age limit Dr’s use to accept or deny a patient that any of you might know of. A fellow I’m talking to is 73 and thinks he’s too old. What do you think?


    Comment by Charlie — May 2, 2012 @ 2:02 PM

    • I don’t know if he’s too “old.” I think that’s a question for the neurologist.

      He’d probably need a whole battery of tests. And they may be concerned about the anesthesia.


      Comment by Phylis Feiner Johnson — May 2, 2012 @ 3:56 PM

    • Shaking the pot does NOT always make for better stew.

      LET’S GET REAL,,, Recovering for surgery at 73 is not the same & easy as recovering from surgery at 23.

      Therefore, while I’m NOT entitled to decide on anyone’s fate, at 73, the man should count his blessings of a very long life & live of GRACEFULLY what ever is left of his life, than having to shuffle around hospitals for surgeries, risking more than the man can manage at his age.

      I’m positively sure it’s very hard to face the bitter truth, but in life, sometimes doing nothing is better than doing something for uncertain outcome.

      If I were in his his shoe, I would rather stay away from the hospitals, Surgeons, Doctors, Nurses,,, to play monopoly card with my OLD BUDDIES, than lay down on the Surgeon bed.

      Sometimes, shaking the pot does NOT always make for better stew.

      Wishing all the best for your buddy, Charlie.


      Comment by Gerrie — May 3, 2012 @ 12:59 AM

  23. My daughter has been recommended fo Lesionectomy surgery to remove isolated brain lesions on the frontal/parietal lobe part of the brain. She is 26 years old and has suffered with seizures most of her life.

    We are considering this surgery next month at the Cleveland Clinic but have some major issues with the many side affects associated with this type of surgery.

    Does anyone have any experience with this type of surgery?

    Thank you,


    Comment by Vince Carter — June 23, 2012 @ 9:14 AM

    • Hi Vince, A fellow at my church had laser brain surgery. It was very effective and he’s on no meds. You might want to ask about that.


      Comment by Charlie — June 24, 2012 @ 1:11 PM

  24. I’m sorry to say, I don’t. But I would suggest you write down ALL of your questions and ask your surgeon about your concerns…NOW.

    Best of luck to all of you…


    Comment by Phylis Feiner Johnson — June 23, 2012 @ 10:20 AM

    • I am sorry I don’t know anyone that has had that particular surgery. Having had brain surgery myself and been seizure free for 21 years, like Phylis has recommended, I would write down EVERY question all of you have and ask until they answer the way YOU understand.
      I would have to say be as positive as you can be–if your daughter decides to have the surgery. Have her be as positive, upbeat and happy as she can be(actually BELIEVE that the surgery is going to work–NO MATTER WHAT) Please keep us all updated as to her progress and let us know what she decides—

      Keep the happy thoughts flowing..she’s in my prayers. I hope things work out for all of you for the best.


      Comment by sunshine(Jeannie) — June 23, 2012 @ 12:34 PM

  25. Preparing your child for brain surgery



    Comment by Phylis Feiner Johnson — June 23, 2012 @ 12:58 PM

  26. Thank you Phylis and Jeannie for your excellent suggestion. Would you know where i might find a listing of questions that would be applicable?


    Comment by Vince Carter — June 23, 2012 @ 8:12 PM

    • Anytime. I love helping/talking to people. I am one of those forever students going for psychology/criminal justice–I should be done in time for my 70th birthday(I just turned 39 and have three beautiful children–other blessings I don’t think I would’ve had before the surgery!!(lol)
      As far as questions, anything that concerns you, scares or worries you, you question, and comes from your heart should be fair game for questions for your daughter’s dr. Ask your daughter what she is feeling–(my doctor did that for my parents)Side effects, possible outcomes, length of recovery, any concerns the doctor has, what they think her changes are of being seizure free or decreasing seizures–how many surgeries they have done before your daughter. And most of all remember think/prayer positive.


      Comment by sunshinej716 — June 23, 2012 @ 9:07 PM

  27. Vince, I think you’ll find some of the questions you’d want to ask in:

    Brain Surgery – Questions to Prepare Yourself


    I wrote that article before the “Preparing Your Child for Brain Surgery” and it has a lot of pertinent questions.

    Hope this helps.

    And, don’t forget to write your questions down!


    Comment by Phylis Feiner Johnson — June 24, 2012 @ 12:02 PM

  28. Hi Phylis, thanks for all your work. I wanted to add a couple links, one is to search for laser ablation epilepsy or laser surgery, and the other is to show your doc is surgery evaluation tool: http://www.epilepsycases.com/


    Comment by alex forest (@forestalexa) — August 21, 2012 @ 5:15 PM

  29. Wow Alex!

    What a great link! More people should know about it.

    Do you have a Facebook page or do you belong to any of the Facebook epilepsy forums?

    If so, you should definitely post it.



    Comment by Phylis Feiner Johnson — August 21, 2012 @ 6:12 PM

  30. I’ve had brain surgery on my left temporal lobe Dec. 29 -1995 . I truly think anyone that can’t control there seizures should at least check into it. Every seizure especially Grand Mal you damage ur brain! I had a seizure just when I went off my meds to soon seizure free for over 17 yrs!! I’ve had every type!! Many


    Comment by Debi Ference — March 6, 2014 @ 11:30 AM

    • That’s great Debi,
      17 Years !!! I’m working on 4 and 1/2.


      Comment by charlie — March 7, 2014 @ 12:28 PM

  31. Neurologist Patricia E. Penovich, MD, of the University of Minnesota and the Minnesota Epilepsy Group in St. Paul, said: “epilepsy patients who are candidates for surgery or other non-drug treatments should be considered for these procedures earlier rather than later.”


    Comment by Phylis Feiner Johnson — March 6, 2014 @ 2:14 PM

  32. If you had epilepsy through your adolescence and are having surgery into your 20s or 30s, you never developed the skills to effectively deal with stress as a seizure was your method of relief. This was a major problem for me at 28. After a successful surgery I thought I was going crazy with the sensations I was having. My doctor said it was just stress and gave a few tips on how to handle it. Forewarned is forearmed…


    Comment by Bill Schwan — June 4, 2014 @ 8:45 PM

  33. I like your idea of asking as many questions you can think of to your surgeon and then writing them down. It’s true that neurological surgeries are no laughing matter, so it’s important that you understand everything clearly and get all of your questions figured out before you begin the procedure. My sister is actually going in for brain surgery next week, and she has started writing down her questions to ask the doctor before her surgery begins. I’ll have to show her this article — I’m sure it would really help her out!


    Comment by Jalu Sakti — October 6, 2016 @ 3:02 PM

  34. I’m glad you found this article and happy that you found it helpful.

    Good luck to your sister next week!


    Comment by Phylis Feiner Johnson — October 6, 2016 @ 4:57 PM

  35. That’s a good point that bedside manner means you’ll be able to more confidently make your decision. Like you said, a doctor should clearly answer your questions. The brain has no pain nerve endings so it can’t directly cause pain. http://www.qns.com.au/


    Comment by larrynweaver2017 — August 31, 2017 @ 6:32 PM

    • I give high marks to the importance of bedside manner.

      This is a big deal. And if your doctor doesn’t want to listen to you now, he certainly won’t later.


      Comment by Phylis Feiner Johnson — September 1, 2017 @ 10:01 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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