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Thread: Telemetry again...

  1. #1
    Community Member Firehorse's Avatar
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    Default Telemetry again...

    Next week, on Monday, I will be admitted to the hospital, tapered off my meds, probably sleep deprived, and bored silly until the seizures start... Thatís of course what we want. Though the first time I had this done, I accidentally discovered that I could fight off seizures. I am now going back to further this research for my own treatment, and the possibility that it might be used to help others. Iíll have my devices on hand, so I will keep you updated on whatís new...

    Hopefully I can get food delivered!
    Firehorse

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    Distinguished Community Member jingle's Avatar
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    Your "devices"? I'll be here waiting for reports. Best wishes.

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    Community Member Firehorse's Avatar
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    At this point, ďdevicesĒ simply mean my ďgadgetsĒ that I am going to be bringing, my iPad, cell phone, and laptop... These will be to keep me from going crazy with boredom, and give me some form of communication with the outside world. The last time I did this was back in the mid 90ís. Gadgets were called books then. I also seem to remember that I might have had a Nintendo GameBoy, with one game card. Football...

    I am still collecting my thoughts about this. My epileptologist is rushing me through all the diagnostic testing, as he announced to me that he is retiring very soon. This is in fact what prompted me to bring this up at a last minute appointment I made to see him before he retired. I have been seeing him for over 20 years. We have a complicated and interesting history. One that includes me meeting my wife, and him curing her epilepsy with epilepsy surgery! While I believe our relationship could exist beyond the medical, (We have many other common interests besides epilepsy.) I have come to count on his counsel for the many complex issues that always come with epilepsy, no matter how experienced, or who, or how many you have help from.

    Of course nothing can replace what can be found here. The Friends who understand what others like us are going through. I am hopeful that this will be quite eventful and productive.

    I have several motivations for doing what I am doing. The most important one of course is for my own quality of life. There is icing on the cake. I do have the ability to potentially contribute to an area of science that could benefit other patients with epilepsy, that have partial seizures/secondarily generalized seizures if everything goes perfectly.

    I am a bit nervous. To succeed, what I need to do is fight off my seizures on command for the EEG, multiple times. I have never done this before. I do this for me, not for others. I am not concentrating on anything else but me, and what I am doing when I do it. I am not even always totally successful.

    This is a technique that I have been practicing for over 25 years, so how could I refuse such an opportunity?

    More later....
    Firehorse

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    Community Member Firehorse's Avatar
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    Default RNS Candidacy

    Oh yeah, all this is preliminary to candidacy, & making a decision about a ďdeviceĒ. Eventually that ďdeviceĒ could be the RNS which would be programmed with data processesd from the telemetry...

    I have already had a 3 Tesla MRI, which is the 1st stage.

    Since the company headquarters is close by, I will take a tour, and grill the people there about their product.
    Firehorse

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    Distinguished Community Member jingle's Avatar
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    I've had so very many MRIs ........ now I'm down to one every 18 months, but I don't know what 3 Tesla is. I go to Barnes Jewish Hospital, St. Louis, MO, that's part of Washington University, so I know they have the best, most modern equipment.
    And I've lived through that awful VEEG two times, 2005 and 2007. At least Barnes has incredibly kind, gentle, nice staff in that epartment.

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    Community Member Firehorse's Avatar
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    A good explanation of what a 3 Tesla MRI is, can be found here... 3TMRI
    Firehorse

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Firehorse)))))) ~

    You are quite brave and generous to be taking this on, and I will be thinking of and praying for you throughout the testing.

    How is the RNS different from the VNS? Is this what you're hoping to have after completing the telemetry?

    I hope you will be able to come here to report on your experience. I will be very interested in following you on this journey.

    Meanwhile, maybe you should store up some sleep, if that's possible!

    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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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    Community Member Firehorse's Avatar
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    Thanks for the (((hugs))) Rose, my mind feels like itís going wild right now. I did spend the day out along about 100 miles of the coast north of San Francisco yesterday to attempt to group my thoughts on this. Iím really donít think of myself as brave by doing this, because I would do it anyway if I felt like I was going to have a seizure.
    Doing this first requires having a simple partial seizure, and yes, thatís is kind of scary. Really, thatís mostly because it starts in the area of my brain that controls those feelings. Then there is a little anxiety about the idea that I might get injured. The injury part is not an issue really due to where I am. So I try to get that out of my mind. I have to concentrate on keeping the ability to concentrate, relaxing, (to fight the anxiety). The last time that I did this, I kept intensely focused on the EEG to keep me from any distractions. I managed to fight them for approximately 9-10 hours in the 1990ís.

    I also have always had a history of doing what was needed to help others like myself; Often I was looking first for my own benefit, finding out that nothing existed, so I helped build and facilitate the support system for others. Brave? No. Intently curious? Extreme scientific curiosity? Very much so! Glad to have connections with the same curiosities!
    Firehorse

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    Community Member Firehorse's Avatar
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    The RNS is used for partial onset seizures. The electrodes are implanted subdurally, with the device just under the scalp. Part of the Telemetry will be to find the focus or foci, so the electrodes may be placed in the best location, and the device can be programmed for the individual.

    Hopefully, I may be able to add data that has never been able to be recognized and recorded on an EEG before.
    Firehorse

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  18. #10
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    Hi Firehorse,

    Here's wishing you the best of luck! Just like you I went off my meds and had testing done before surgery. Good luck with the RNS I've heard a lot of positive reports about it.
    One thing I just started doing recently is taking two tablespoons of apple cider vinegar with Mother in it and I am amazed at how my seizures have decreased. Here I was using it
    to lose weight but since it's help stop my seizures I'm continuing to use it.
    Correct me if I'm wrong but does the RNS also help cool the brain down stopping the neurons from firing up which in turn triggers seizures. I know that they are either working on
    a device like that or the RNS may be that device. Either way I wish you only the best of luck and May God Bless You!

    Sue

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