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Thread: Vns #3

  1. #1
    Distinguished Community Member howdydave's Avatar
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    Default Vns #3

    Just got back from my epileptologists office and they are lining me up for the instillation of my third Vagus Nerve Stimulator.

    It works so well for me that they want to make sure I have a new one before the batteries run out on the one inside of me.
    Dave
    Ego sum quis ego sum quod ut est quicumque ego sum - Popeye
    www.howdydave.com

  2. #2
    Distinguished Community Member howdydave's Avatar
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    For anybody considering having a VNS implant:

    I just got a "Heads Up" from my sister (who is an RN) that Medtronics now has one that allows you to have an MRI with the device inside of you.
    Look into it when you are considering all of the pros and cons.
    Dave
    Ego sum quis ego sum quod ut est quicumque ego sum - Popeye
    www.howdydave.com

  3. #3
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    Howdy Dave,

    That's great news to hear! I wish you the best of luck with the new VNS. I was looking into that but I have more than 2 areas in my brain that
    are triggering seizures so my Epileptologist put me on cbd (med marijuana) and that has really helped me a lot.
    Here's wishing you only the best and May God Bless You!

    Sue

  4. #4
    Distinguished Community Member howdydave's Avatar
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    I got the VNS because it was discovered that I have activity and triggers in both temporal lobes when I was a candidate for epilepsy surgery.

    They can't amputate both halves of your brain don'cha know...
    Dave
    Ego sum quis ego sum quod ut est quicumque ego sum - Popeye
    www.howdydave.com

  5. #5
    Distinguished Community Member howdydave's Avatar
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    The surgery went well and, I'm glad to say, this time they used glue rather than biodegradable thread to close the wound.
    When the biodegradable thread starts breaking apart, ends of it stick ya and it itches like crazy!
    Last edited by howdydave; 01-25-2018 at 08:31 AM.
    Dave
    Ego sum quis ego sum quod ut est quicumque ego sum - Popeye
    www.howdydave.com

  6. #6
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    Howdy Dave,
    I'm happy to hear that your surgery went well. The glue does itch like crazy but give it time and it will stop itching. I'm now looking into
    gamma knife surgery since the damage on both temporal lobes are so deep they can't get all of it by doing the temporal lobectomy so the gamma knife
    surgery is my next step. Wishing you only the best and May God Bless You!

    Sue

  7. #7
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    I had a VNS put in and it has helped some and now I am on the CBD (Epidiolex). I don't really feel like the CBD is making a difference although I am not at 'theraputic' level yet (I'm only at 5 mg a day).

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  9. #8
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((SaraEve41)))))) ~

    TO BRAINTALK!

    So glad that you found us!

    Why is there a need to titrate up to a therapeutic level of CBD? It doesn't have the assorted evil side effects of AEDs, and while there might be a toxic level of CBD oil, how is it measured? Does it show up in blood tests?

    I'm happy that the VNS is working well for you, and I hope it continues to do so.

    Please drop by and visit again. This forum is a bit quiet these days, but if there is activity here, perhaps you will entice other members to return and chat.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  10. #9
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    Hi SaraEve41,

    Just like you I use the cbd oil and I use 5 mg. a day I don't get the Epidiolex I found out that had more chemicals than the natural cbd oil so I bought mine from a place on line called Healthy hemp oil.com
    they have it in creams, inhalers and mouth spray. I use the mouth spray and so far it has reduced my seizures to the lowest in my life. I wish you the best of luck and May God Bless You!

    Sue

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