need answers :(

Posted , 10 users are following.

hey guys I'm currently going crazy, I've had my MRI results back and they are clear no blood vessels pushing on the nerve. Doctor doesn't know what the cause is but if I don't take the tegretol I can't deal with the pain. I'm in pain constantly especially in my front lower teeth, I just don't know what to do and I don't want to be on medication for life sad has anyone else been left in the dark?

0 likes, 18 replies

18 Replies

  • Posted

    An MRI doesn't always show a compression, especially if the MRI isn't done correctly...my last one included 600 images. The one before that was only a few images of my whole head, which was useless. While it's good when the problem can be identified prior to surgery, it shouldn't be an absolute necessity.

    • Posted

      Clint71,

      Once inside your head neurosurgeon can actually see the compression. Which is the largest artery in the body being touched by a nerve.

      This is how my neurosurgeon explained it to me it was a nerve touching the artery.

      Neurosurgeon also said that the nerve had strethed it self in order to touch the artery.

      God bless

      Us and keep us and give us peace

  • Posted

    I am left in the dark as to why an ear infection caused my tn it sucks an no blood vessel is touching my nerve but im in dull pain all the time my medication helps with it.

    Sincerely Dane

    • Posted

      TNHURTSME,

      l was getting shocks under my tooth and on face my face, I never had a toothache I had a tooth shock under tooth, and then pain on gum started.

      I made the dental surgeon pull a good tooth for nothing, but shocks in gum were tooth was at was a bit less bad.

      I don't believe your ear ache started your TN since the doctors don't even know why it happens. My hubby says it happens because we have insomnia and stay up all nite. LOL

      God bless

      us and keep us and give us peace

  • Posted

    I'm so sorry to hear that, I would try a 2nd Mir in 6 months and get a 2nd opinion from a neurologist who has much experience

    Stay on tegretol meanwhile

    Do not give up hope, this monster will not take over

  • Posted

    my MRI showed the nerve and the blood vessel parrallel to each other but no compression.  Specialist said that is not unusual...so based on my symptoms and response to meds I am booked for MVD...next spring/summer
    • Posted

      As it is the most reliable fix, do your research cuz it is invasive, very invasive, I would take it as last resort, I get electric shocks with my tn, so I would consider mvd in future when neurontin wares off

    • Posted

      Karen 36710,

      B4 u have MVD ask your doctor about other procedures and if you can have MVD after you have had those other procedures. Make MVD your last choice.

      God bless

      us and keep us and give us peace

    • Posted

      The neurosurgeon already said that other procedures will not work for me.
  • Posted

    Hey Katie,

    Wondered how you been. Well now we know. I am so sorry this "monster" is ravishing your life. Ask your Doctor if the MRI was a 3-D Volume Slice. It is more of a precise imaging. If you still get no where, go and get a second opinion, and then a third, and so on. Takes time, but you have to research and do what you are doing on this forum, by asking questions.

    And yes, my Nuerosurgeon will not do any more procedures, as I have 2 strikes against me already. So I am seeking elsewhere.

    I hope this helps.

    May God Bless you in finding the right answer,

    Greg

     

  • Posted

    Katiehdmahone,

    Neurologist said my MRI never showed anything but he sent me to neurosurgeon.

    My neurosurgeon said, that my nerve was hitting on my artery.

    The surgeon went on to explain that this artery is the largest artery in the body.

    I didn't question his knowledge and I got MVD. I don't think it's a lot of people out here who fits condition having positive MRI and didn't have one of the forums procedures done.

    God bless

    us and keep us and give us peace

  • Posted

    Katiehdmahon

    We all need to make awareness of this dreadful disease wherever we go, we need to info people by telling pur story.

    God bless

    us and keep us and give us peace

  • Posted

    I'm the same as you with the MRI. I've been fortunate to meet a doctor who is a medical doctor, he also specialises in acupuncture and chinese medicine and natropathy; he mixes the together. I explianed my pain to him and told him about my MRI results. He said he questions whether I have TN. He looked at my teeth and could see I'm a grinder, plus my jaw is out of line. He said this is the cause of my electric shock pain that I get; he also said dental work would exacerbate the pain becasue when in a dentist chair you mouth is open for sometimes upto an hour. I have had amazing relief from my pain with a course of acupuncture. I am also on Magnesium Chelate, Folinic Acid, B12, Tumeric for its anti-inflammatory effects. Google these natural rememdies to learn more about them. 

  • Posted

    There is not always an answer and my experience has been that TN can go away and then come back.  Keep trying to get the right combination of medication for you. Take it at regular intervals through the 24 hours. Then if no symptoms for a couple of weeks, try reducing by one tablet at a time.  With guidance from my doctor, I was able to come off medication altogether for a few months before symptoms returned.  Good luck.
  • Posted

    GABA is what I take I used Teg the other day because I ran out and woooah . Hope all gets better
    • Posted

      im on oxcarbazepine which is like tegretol but newer an it sucks my body hurts all the time im waiting to see my neurologist i have cymbalta i have been thinking about taking it but like every drug your body gets addicted to it scary stuff

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