Epilepsy Talk

16 Comments »

  1. I can definitely relate to this doc, my tumor was the size of a baseball when they removed it. 202.5 cubic centimeters, 1.5 cubic centimeters bigger than a baseball. Mine was ontop of the motor and sensory strip area of the brain and pushing on every lobe. There was also a twist on my spinal cord from it. Docs said when they found it, you need surgery right away, or as soon as possible, otherwise i would/could go into a coma. UGH!!!!

    “None of them were learning a lot about seizures in medical school and training, and they didn’t really understand how seizures could affect people.” Oh my we are really in trouble if that is the case. If they need to see a seizure, they can go on Youtube and find a lot of examples of seizures.

    When i went back to work, it was very hard for me, but luckly i had all my facilities and could function mentally well. I wanted to retire back then, but couldn’t since i didn’t have the finances to do it. I remember the negative perception people had about people with brain tumors and seizures. The mean things people would say and basically it felt like my opinion did not matter, since of my so called “mental handicap”. Well i proved to myself and to them who is mentally handicaped. After surgery, i invested heavily and those investments 10 yrs later brought me enough to retire on at age 48. Life can be really flopped up at times, but it can also bring rewards, just remember when you are at the bottom there is only one way to go, crawl up to the top.

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    Comment by Zolt — June 6, 2018 @ 5:43 PM

    • Zolt, you ROCK!

      I knew part of your story but never the whole, true tale.

      Congratulations on your success and for being such an optimistic and persistent person.

      Like

      Comment by Phylis Feiner Johnson — June 6, 2018 @ 5:51 PM

  2. Thanks Phylis, yeah, it’s been one hell of a long journey to get where i am at, but my dream had finally arrived. After surgery i rocked, the little brains i had left, thinking of how people get rich and how i could also do it. I also devoted a lot of time on studying brain tumors and seizures. I also devoted a lot of time on studying mri pictures, especially my own, since i’ve gotten quite a lot of mri. Luckliy for 12 yrs since the operation there has been no return of the tumor. Only draw back is i don’t have the great medical coverage as i did when i was working. So not sure i want to pay for an mri, unless if i really feel something is messed up with me. But so far all is good. Seizures seem to be getting better, my last one was on Mothers day, may 13th, the one before that was in sept of the yr before. That was the longest i went without one, and i use to have them monthly when it was at it’s worst.

    Have a good evening!!

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    Comment by Zolt — June 6, 2018 @ 6:35 PM

  3. my story entirely-finally correctly diagnosed with PNES and epilepsy, but my neuros would never listen to my questions about all the weird things I experienced, one was so rude and bad tempered he even yelled to get out of his office, later I’d a very minor PNES, couldn’t speak, he panicked, along with the other staff, I slipped into dissociation and blacked out, I remember trying to escape, came round in a back corridor with 2 security guards watching me who wouldn’t allow me to move while my neuro and his colleagues were further up the corridor pacing around, worried sick, seems I managed to get on a bus where he found me,and those guards held me down, I have a vague memory of a severe pain on my wrist and a heavy weight on it which must have been them coralling me, what a way to treat a distressed patient, tho’ I wasn’t distressed, they caused the distress. Docs I’ve told that to don’t or won’t believe me

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    Comment by Gail — June 7, 2018 @ 4:59 AM

    • A panicked doctors and hopeless staff, plus brutal security guards.

      That’s a real recommendation towards humanity and the medical commumity. 😦

      And the stress sure didn’t help your PNES, I’m sure.

      Like

      Comment by Phylis Feiner Johnson — June 7, 2018 @ 10:24 AM

  4. Thanks for sharing your inspiring stories, it’s empowering to know that there are courageous ways to face the hurdles & hardships of seizures, charting successful destiny breaking away from the chains of Epilepsy, overcoming the handicapping disorder to fly with their own wings.
    It’s uplifting to see that determined people chart their own destiny, against formidable odds.
    Best wishes to all!!!
    Gerrie

    Like

    Comment by BahreNegash Eritrea — June 9, 2018 @ 3:57 PM

  5. Travis, I lost your comment, I’m so very, very sorry. But I do think you were one of the fortunate ones, working with a doctor with first hand knowledge and understanding what it’s like down in the trenches.

    Like

    Comment by Phylis Feiner Johnson — June 14, 2018 @ 12:36 PM

  6. Phylis Feiner Johnson, not to dismiss the expertise of Neurologists in areas related to the brain, however, I think that Neurologists who suffer from Epilepsy have a greater perspective than those who do not. My seizures are well managed, however, I find it to be difficult to relate to people outside of blogs that speak of this subject.

    Like

    Comment by Jeffrey Liakos — July 7, 2018 @ 10:11 AM

    • I can understand that.

      I think a neurologist who himself practices, yet has epilepsy, is remarkable.

      They are few and far between.

      Like

      Comment by Phylis Feiner Johnson — July 7, 2018 @ 10:18 AM

  7. Phylis Feiner Johnson, I wonder if a Neurologist can prescribe their own medications.

    Like

    Comment by Jeffrey Liakos — July 7, 2018 @ 1:43 PM

  8. Phylis Feiner Johnson, I know that. I was just kidding. You took what I said too literally.

    Like

    Comment by Jeffrey Liakos — July 7, 2018 @ 3:16 PM

  9. Phylis Feiner Johnson, it’s all right. I am sure that what I said can be misunderstood by any person who reads comments like what I had just made. So you need not worry about that.

    Like

    Comment by Jeffrey Liakos — July 7, 2018 @ 3:48 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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