Hope lives! Positive outcomes for TN

Posted , 3 users are following.

I would like to start a discussion where we only hear about positive outcomes, ideas.  We need to hear in order to have hope.  I do anyway.

My story:

After bouts of screaming on the floor in pain, a neurologist put me on anti seisure drugs which made me sick, tired, depressed...ick!

So found a doc in my area that specializes in surgeries for TN. He did a radiofrequency surgery and it went away.  I have a numb jaw on one side making it difficult to eat but do I care?  I have my life back. I am happy again and raring to do fun things.  TN took that all way but now I am alive again.

Bad news...the TN came back and had to go on meds for a week so the doc did another radiosurgery but used stronger measures.  Am fine again and planning on it lasting longer this time (hopefully for years) and planning to go on a trip with my husband and grandson. Yay for modern medicine and cool surgeons.  

I am also looking into other things to curb the pain if it returns...will report on that as I find things out.  


Hope lives!

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4 Replies

  • Posted

    I had a balloon compression done april 2013. I have had no pain for 16 months. I can have it done again if it comes back. I was told it can last 3 months to 3 years. After 16 years of pain I have got my life back. I am 71 years old so I wish they did this proceedure years ago.



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    • Posted

      I love your experience. I hope it lasts a long time, but even if/ when it comes back, you just do it again.  I love that we don't have to live with this horrible thing and can stay off those drugs!


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  • Posted

    Hi 48 year old female from Houston, Tx USA. I had TN for 12 years. Just got MVD surgery on 6/19/2014 (almost 2 months ago). Was completely numb on the side of the surgery when I woke up from surgery (including scalp, tongue, lips, roof of mouth, teeth, forehead, temple, cheek, chin...Everything on my right side). Surgeon said it will take 3 months to go away. I had zero TN pain after surgery. Completely off all pain and anti seizure meds after one week of surgery. Today I am still pain free. My numbness has gotten better. The only places that I am still numb are my cheek, teeth and lips (about 35%). It is a little uncomfortable and weird, but I can live with this. I have my life back and I am a happy person again.


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    • Posted

      This is good news Nina. The  numb stuff we have to live with it seems but, like you, I feel it as annoying but since the horrid pain is gone, I don't care.  Just have to learn to live with numb face parts.  I have  a hard time eating and sometimes bite my cheek.  I can only eat soft things mostly.  It is hard to eat meat because of all the chewing.  We TN victims have to endure this kind of stuff it seems in order to end that horrible pain/shocks/etc.

      Intersting journey we are on.....Alice

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