Mouth Cancer: Dealing with pain, osteonecrosis and trismus.

I was diagnosed with tongue cancer in 2023. My Mayo oncologist said in his opinion it was linked to my MS. He said being autoimmune set the stage for my cancer. Mine was HPV -16 related.

How are you doing today? Did you have radiation?

I'm doing good. Yes, I had chemo(Cisplatin 7 times and simultaneous radiation 38 times ending in Feb. 2024.

So glad you are doing good.

@ganna54, I also added your discussion and question to the Head & Neck Cancer support group https://connect.mayoclinic.org/group/head-neck-cancer/

You may also be interested in these related discussions:
- Trismus (lock jaw) after Head & Neck cancer treatment: What helps? https://connect.mayoclinic.org/discussion/lockjaw-after-sinus-cancer-surgery/

- Fat grafting or Botox to relief pain & tightness after treatment? https://connect.mayoclinic.org/discussion/fat-grafting-or-botox-experience/

- Anyone had Hyperbaric Oxygen Treatment after radiation? https://connect.mayoclinic.org/discussion/hyperbaric-oxygen-treatment/

Hi @ganna54 I too had osteoradionecrosis and trismus, loss of teeth and regular infections of the gum. My research of hyperbaric treatment all pointed to the fact that dead bone will not come back to life.
Botox is a bandage, not a cure but perhaps some momentary relief. However, with MS, is your neurologist on board with this? Doubtful.
That remains the only option: to rid yourself of the dead bone and tissue. Fortunately there is a procedure. It’s called (in my case anyway) a mandiblectomy with fibula free flap replacement followed by insertion of a teeth prosthetic.
Basically the dead bone is removed and replaced with living bone and blood supply and tissue, which allows it to heal and live in your jaw, able to support a teeth prosthetic. The bone comes from either your fibula, shoulder bone, or pelvic bone. The surgery, when done by an experienced team, is quality of life saving. If you are interested or have questions, there is help out there, I among the group. Have you looked into this?

I have read extensively about hyperbaric chambers. Unfortunately, it is not for people with Multiple Sclerosis, even though my MS neuro, a specialist, said it would help. Botox is a bandage, but some say it helps with pain. It is doubtful they want to operate as I am 71 with secondary progressive MS. There have been so many mistakes made with me that I now can't seem to trust the doctors, most which are specialists. At any rate, I will get any info on this procedure. Were you unable to eat for a long time? The recovery time for people with MS is twice as long. Or so I've been told. Thank-you for your response

I was 65 when I had my mandiblecomy. not a fun ride but certainly easier than my cancer treatments. Went on a feeding tube for about three weeks and received my teeth prosthetic about ten months later. I was eating before the feeding tube came out. All in all not too much trouble. But I do understand the reluctance with the MS as it certainly will trigger issues. My wife has relapsing remitting MS and it doesn't take much to send her over the physical edge.
Without the surgery, it will not get better and likely worse. If the bone breaks, then it is an emergency situation that most local facilitates are ill equipped to handle. I think the good doctors up at Mayo Rochester would think your age does not limit you. The surgery is an eight hour day +/- and the recovery in hospital is roughly five days. There is some work-up appointments prior to surgery but that is all fairly easy. Courage.

Thank-you.