Adjusting to new info - just diagnosed

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Hey everyone, I'm 27 and just got diagnosed with TN this weekend after about 2 years of face pain that was misdiagnosed as chronic sinus infections. Thankfully my doctor ruled out MS. It's a relief in one aspect because now I know what's wrong, but I'm also freaking out a bit. It's a little disconcerting to know I'm a lot younger than most people who have this. I'm really encouraged by people's posts of how the medications have worked for them well and really nervous of the posts that say it doesn't. But anyway, I just wanted to reach out and say hi. 

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  • Posted

    Just know that if meds don't work for you there are surgeries that will get you off meds. I say, do the research, learn what the surgeries are, ask questions.  The more you know the better your outcome!

    You can do this!👍

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  • Posted

    You have to find the right mix maybe one is enough for awhile but then you may need two i have had trigeminal neuropathy for almost 1 an half its been rough
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  • Posted

    I was in the 4th grade when i started having TN episodes. i agree with the others, learn as much as you can, be you own advocate
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  • Posted

    If you haven't had an MRI yet, that's pretty standard with a TN diagnosis to rule out tumors or any other abnormality that could cause TN or TN-like pain.

    If you DO get an MRI, make sure they focus on the trigeminal nerve, to see if vascular compression can be seen. My first MRI was only a few images of my whole head, requiring a second several-thousand-dollar MRI that consisted of 600 images, focused on the nerve.

    I keep telling people this, but look into MVD surgery. TN gets worse over time, and eventually the meds either stop working, or you have to take so much that it's nearly toxic. I was diagnosed at 34 and if I had known then what I know now, I would've pushed for the surgery immediately. Youth is a huge advantage when it comes to healing after surgery.

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    • Posted

      i had no idea that you wouldn't get a good view of the trigeminal nerve out of an mri of the head, hmmmm, ty 4 saying this. i may look into the one i had done further....

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    • Posted

      That's good to know. I'm going to be getting an MRI early next week. My neurologist said that if he referred me for sugery they may not even choose to do it since my age. But yeah, I have a fairly deep-seated general distrust of doctors, so I think you're definitely right about learning as much as I can myself. This weekend I didn't even know TN was a thing and now I'm trying to soak up as much info as I can about it. 

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    • Posted

      I learned after the fact that looking at an MRI of a whole head to spot nerve compression is like using a globe to find a street address. Lol.

      I should've added that the images should be taken with and without contrast.

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    • Posted

      hmmm, that sounds like what i had done, i know i had to have 1 with w/o contrast and then another with. i have a bad back an laying for that long flat on my back killed me, i couldn't even raise myself up all the way w/o help.....

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    • Posted

      I also had an MRA in addition to MRI. One showed sinus infection but doubt it had anything to do with my TN. Got it cleared up. Meds controlling pain but  know it's still present when some pain occurs in between pills. Not bad though. Going to take it a day at a time and be grateful for pain relief that med (tegretol) has provided. Good luck and keep up the research.

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    • Posted

      Nyxj,

      Hello

      Welcome to the TN family:

      If u have kids r in college, then don't do MVD surgery it is brain surgery.

      Look up all procedures other than surgery.

      Tell Neurologist u want to with family, visit doctor who does other procedures and let him recommed them to you, if he doesn't do that go get urself another Neurologist, if if go tobany doctor who has a P.A., head for the front door and be sure to make sure that the door hits u on the way out.

      Read the affects of having an MVD surgery, their is no age to TN children as young as fuve have suffered from this horid TN.

      Use other method that is out there and leave MVD as a last resource also read by problems with MVD, looking at earlier chats on thisforum and u will know y I am giving u advice, also go to 5 more neur/ neurologist b4 making ur final decisions.

      Good luck with whichever of these procedures u chooce to havedon=.

      If a parent/ breadwinner choose MVD as like I said a last resource.

      God bless

      us and keep us and give us peace

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  • Posted

    Look up gamma knife,non invasive and lots of sucess with it. Youtube has videos of it,no cutting involved just laser pinpointing the nerve.
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  • Posted

    Gamma knife and Radiofrequency don't cut the nerve.

     

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  • Posted

    Hi, I have had TN for about 11+ years and my advice is join TN Assoniation UK.      Look it up.  It's a good place to start and you get help and advice from people that have TN.     I got a lot of help when I was first diagnosed.   

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