Trigeminal Neuralgia*

A friend of mine is 76, the only treatment they would do was Lasar Radiation. It worked, it did give her a little droop. This was in SanDiego. I have it to, I had an MVD at Mayo. Eternally grateful.

I do feel the electrical shock pain and also burning at the same time.

@vickylynn

Did you feel the electrical shock pain and also burning at the same time? If you did , did the GK work?

I do feel electrical shock at times. Usually if I forgot my meds. I had to change to gabapentin because trileptal was causing my sodium levels to be low. Had to start slow on building up medicine. Had lots of shocks and pain. Things have improved but I know I will never be free of pain and medicine

Hi. I recently had Gammaknife surgery. It zaps radiation at the brain stem where the trigeminal nerve begins its journey. It was truly painless (other than the mental cap that is screwed onto the head to keep it totally steady). After the surgery there can be an elevation in pain as the brain stem is cooling and healing. Mine took about four weeks and thereafter totally pain free and no meds for at least three months. I was traveling thereafter in the Baltic regions and Russia and got a bad sinus infection. The neuralgia kicked up again. I am treating via pain management and scheduled for a second zapping Inn December. Given the most recent bout (which is decidedly worse than original onset) I am convinced that my neuralgia is viral and herpetically related.
Having said all this I am a fan of Gammaknife, virtually no downtown and while there can be some mild side effects such as facial numbness I had zero after effect.

Hi @frangreen1143 and Welcome to Connect! Thank you for sharing your hope-inspiring story.

I'm sure that @sjsmall5286 @vickylynn and @user_chf56161a would like to hear this.

@frangreen1143 how long had you been experiencing trigeminal neuralgia symptoms prior to the gammaknife surgery?

Thanks for your kind email! I was experiencing symptoms,likely like most with Trigeminal Neuralgia, that were thought to be other than TriGem. Indeed for years, I was treated by some of the finest dental practitioners in NYC and had a number of teeth removed but nothing alleviates the increasingly unusual pain - the stinging, burning and somewhat maddening pain that is attendant to TRIGem.
More specifically to answer your question,it has been ongoing about four years before I sought neurological opinion and treatment. I fairly early on opted for Gammaknife once it was determined that it could be an effective modality. I live (and love) an active lifestyle and for me (no judgements as to others !) I wanted the pain g.o.n.e.! not managed. Having said that it’s still a work in progress as I am scheduled for round two with the Gammaknife.
Have a great day!

Hello, @frangreen1143 - I'd also like to extend a welcome to Mayo Clinic Connect. I imagine it was helpful to finally get a diagnosis of trigeminal neuralgia and know what you were dealing with.

Hoping members in this discussion like @stfnwtl89 @scarlettkittaen @pcm1957 @bobbich @shelley701 @gchildren7 will return with some thoughts about your journey to your trigeminal neuralgia diagnosis and whether they, too, may have experienced a long road to a diagnosis. They may also like to hear about and have some thoughts on the Gamma Knife radiosurgery. @hopeful33250 may also have some input.

You said you are getting the Gamma Knife radiosurgery and also treating via pain management, @frangreen1143. Will you share more about what types of pain management you are using for the trigeminal neuralgia?

Frangreen1143

I also in the same boat wanted my pain gone, had the MVD. Pain is better. Still a work in progress..