Trigeminal Neuralgia

janymac Member Posts: 35
edited March 2014 in Head and Neck Cancer #1
8 years after treament, I have recently been crawling the walls with extreme pain in the right side of my faace - very like the pain I had during radiotherapy, but just on one side, as if I have severe ear ache, dental bscess and broken jaw all at once. Docotr has finally said it is trigeminal neuralgia, and has started me on some treatments ( normal pain killers don't work on this disease). I am keeping my fingers crossed it works - he said it is caused by the radiotherapy as the scar tissue is now compressing the nerve at its root. Anyone else had this?


  • Hondo
    Hondo Member Posts: 6,636 Member

    It seams that there are a lot of things that happen to us many years down the line after rad & chemo that we were not told by our doctors.

    Most of my pain is in the left ear but from the tube I am told, but not to sure if my ENT knows for sure. The other problem is if I over stress my self on anything I get terrible pain in the neck right under the right side of the jaw and then everything goes numb including the tongue , I can’t talk, I can’t swallow, I can’t eat. It last sometimes for ½ hour before it starts to ease up. I look at it as just another one of those side affects.

    Hope you can get some help for your pain my Friend, all the best to you
  • clarederbin
    clarederbin Member Posts: 1
    edited November 2017 #3
    Trismus, Oral Aperature

    Hi all - I need a root canal!  I have gone to an Endodontist that refered me to an Oral Surgeon who declined to do the work.  I called another Oral Surgeon/Specialist and they told me to go to UCLA.  Wanted to hear from anyone who has had some type of oral surgery w/limited range of mouth opening.

  • Fireman
    Fireman Member Posts: 39

    You are so lucky to have had people who were smart enough to refuse to do the work. I wasn't so lucky. I had a dentist pull a molar on my radiated side and have been suffering greatly for the last 2 years. He knew nothing about working on post radiated patients and I developed osteoradionecrosis because of it. They referred you to UCLA because they have oral surgeons that are experienced with post head and neck radiation patients. That's what you need and thank goodness you had people who knew their limitations. I wish I had.

    Best regards