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Thread: Worried

  1. #1
    Community Member
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    Default Worried

    I am so confused and very worried. I have been having new "tingles" of fire and I am so scared that my TN is spreading. Is that possible?

    For my background: I have had two aneurysms clipped and my TN seemed to be a result of my surgeries. At first, I believed I had severe headaches all the time that just made it impossible to move. All of my pain was concentrated on the left side of my face. My scar goes from the middle of my forehead to down below my left ear. I found a wonderful doctor who figured out my problem and I am very controlled with a combination of Lyrica and Keppra. Lately, I have noticed new shoots of nerve pain that go down the left side of neck (following the track of my carotid artery) and lots of pain in new spots on the left side of my face. I have also developed an eye tic on my right side and have little nerve tingles on the right.

    Has anyone had their TN spread? I am so depressed at the thought of further pain and I really don't know what to do!!!
    Candice-37 years old
    7 mm ophthalmic annie clipped Nov 14, 2007
    4 mm daughter annie clipped March 11, 2009
    September 2009 diagnosed with Trigeminal Neuralgia

  2. #2
    Distinguished Community Member Ging's Avatar
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    Sorry Candice, I don't have this but wanted to send you the best support and good thoughts that this will be okay! It seems none of us follow protocol when it comes to brain surgery, I know the doctors learn new stuff every time because of the issues we present with, but dog gone it, it would be nice to follow "the text book" once in a while right? I never do so ,while I don't have Trigeminal Neuralgia, I certainly don't do the text book route either,:( hugs to you honey and thank you for Your post of good wishes for me, hang in there, GING :)

  3. #3
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    Thanks so much, Ging! I don't know what I would do without the support of this board. I feel like y'all have saved me so many times. It is nice to know that I am not all alone in this and have support from those like me :) I appreciate you and I still pray for you to heal more and more each day!
    Candice-37 years old
    7 mm ophthalmic annie clipped Nov 14, 2007
    4 mm daughter annie clipped March 11, 2009
    September 2009 diagnosed with Trigeminal Neuralgia

  4. #4
    Community Member dbobsnodgrass's Avatar
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    Hi Candice,

    I have an understanding of the terms Trigeminal Neuralgia, Pathology, Demyelinating; I didn't want to know this much about Neurology.

    Worry hasn't been in my vocabulary for awhile:)

    I think (((GING))) is on to something about doctors on a learning curve... I've been teaching my best specialist friends for almost 5 years!

    No Lyrica, but, I'll see your Keppra, and raise you 1,200 MG Neurontin and 40 MG Baclofen. See how much fun we can have playing *Pharma-Poker?

    Depression isn't funny, though I have some decent Craniotomy jokes. Take care, bob

    *I guess it's been Trademarked already:(
    Nothing new is going to happen yesterday.

  5. #5
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    Alright Bob--you would probably win at Pharma-Poker! Only 1000 mg Keppra and 600 mg Lyrica. Tegretol worked great, but my WBC count dropped too low. I have worked out all my nifty little things that help minimize pain--so that is one good thing!

    I would love to hear some craniotomy jokes--my husband would love it too. Our lives have taken a big hit in the past few years, but we are finally learning that I just have to approach it all with a smile and take it as it comes. I can't change a thing--just try and manage it as best I can (with a little help from my meds )
    Candice-37 years old
    7 mm ophthalmic annie clipped Nov 14, 2007
    4 mm daughter annie clipped March 11, 2009
    September 2009 diagnosed with Trigeminal Neuralgia

  6. #6
    Community Member dbobsnodgrass's Avatar
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    Tegretol (Carbatrol) worked well for me until Toxic Epidermal Necrolysis, that's a really funny continuing scourge, eh, story, too!

    Okay, back to the 'Nooks and Craniotomies':)

    I'm continent, but, wear 7 pads...bob
    Nothing new is going to happen yesterday.

  7. #7
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    LMAO!!! Love it!!!

    Candice, I wish I could offer some pearls of wisdom or advice to you on this but having never had the MVD, or TN it seems ( GPN ) I can't offer any experience on it, all I can say is hang in there girl, hopefully its just a blip and the nerve is just having a bit of a hissy fit and it will settle back down once it's got it out of its system. We can but hope and pray that's the case for you.

    Much love and pain free wishes as ever

    X X X

  8. #8
    Community Member dbobsnodgrass's Avatar
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    I've heard tales about people getting sent signs, or signals.

    Feel a need to share this, I took and misplaced this [ http://flic.kr/p/atbG4o ] in July...all I remember was hearing a tune.

    Location: Bridge and Chestnut Street, Manchester, New Hampshire - - - - - 6 blocks from where I live, or somewhere in "The Twilight Zone"?

    This REALLY is funny, I've been a long shot anyway, but the odds of this? bob
    Nothing new is going to happen yesterday.

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