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Thread: I Can't take these siezure-iype. feejings!!!

  1. #11
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    Chris, I'm not sure, I get it?? I seeing a *neurologist* and *everyone*, *is*, working together.
    They're in the same hospital and do, communicate with each other. I mean, if, I shouldn't be seeing
    a neurologist for my siezures, then, who should I be seeing? Are you saying, I'm not seeing the right
    type of Dr.??

    Phyllis

  2. #12
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    I think the suggestion back a few posts was regarding an Epileptologist. The short definition of that professional is a neurologist with extra training for Epilepsy. They really do make a difference!!

    I've had a few neurologists, but my last two have been Epileptologists. I tell you, they make all the difference. It's not the going through the list of medications seeing if the next one works.

    Hope it gets better,

    --Travis

  3. #13
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    Exclamation Wow!!!

    Really, Travis?!? I seriously, always thought, my neurologist was enough!?! Okay!
    These *horrible*, *horrendous* sesations *need* to *go*, so, I'm looking into it!!

    Thanks so much for your input!!

    Phyllis

  4. #14
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    Many of the posts on this forum mention the importance and great benefit of an Epileptologist in our care. Search for EPileptologist. With the very real evidence-based statistics re epilepsy medications and seizures being 'once one medication fails to stop the seizures, there is less than a 15% chance ANY of them will ever stop them', the neurologists try this one and come back, then we'll try that one. add that, etc etc. All the while seizures are continuing and kindling can take hold while the area of involvement grows leading to worsening seizures and a negative effect n the brain tissue. Epileptologists are the only ones who have other tools in their tool box to help stop seizures general neuros do not have anything but more pills that just may not ever work. What state are you in? Tattoo.

  5. #15
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    Tattoo, I'm in Mass,

    Phyllis

  6. #16
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    Thumbs down Yep, I figured!!

    :( *No one*, on these forums, is in Mass!:(:(

    Phyllis

  7. #17
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    A possible site to look for high level Epilepsy clinics is below. Level 4 is the TOP level in the NAEC scale.

    http://www.naeclocator.org/find.htm
    type in your zip and see what pops up.

    --Travis

  8. #18
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    Travis, thank you!! I will look into a couple of them. One of them, is the Dr., I have, already!...Lol Again, I truly
    appreciate the help!!!:)

    Phyllis
    Last edited by Ponygirl; 04-30-2012 at 12:16 AM.

  9. #19
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    Don't get me wrong. Some Neurologists perform an outstanding job.

    Now that I've switched to Epileptologists, I won't go back. In fact, the listing of that profession on my current doctor is why I chose him compared to the next listed staff, however both had that training I found out later. It was just not listed on the second one.

    In the four years I've been at my current clinic (has it really been that long!?) I've had a few Video EEG's, way too many MRI's, and just this winter had brain surgery to remove damaged tissue (great result, no seizure yet!) after over 30 years of seizures. I went through 10 medications the last 25 years before surgery was offered. I even asked about the VNS before surgery was suggested. I wanted to do the least invasive before moving on.

    If you wish to change to an Epileptologist, do your research. The Web is great for that. Just don't take everything you find on the web to be the exact and only truth. Ask the receptionist if you want for more information...Decide if you want to stay where you are at, or change. There's no guarantee you will have better results then where you are at now.

    --Travis

  10. #20
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    Yeah, I really am, considering, an epileptologist. I mean, it can't be worse, than, where I am, now.
    I mean, I'm seeing just, a regular PCP, whom, can be seen for, *anything*. I really don't think, she
    knows much, about, siezures.

    Phyllis

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