JT

First, Im very sorry for the loss of your father in law. Im sure its a difficult time for your family.

I am very similar to you with the trismus and dental issues. My opening has gone from 4mm to 14mm. I have done 52 HBO dives with 18 more to go. Physical therapy is what has enabled me to get to the 14mm opening. But, Im in the same boat as you are.....how can dental work be done when you cant open your mouth. I have gone from specialist to specialist trying to find help to no avail. I have seen ENTs, oral surgeons, plastic surgeons, speech therapist, physical therapist. You name it, Ive gone there for a consult.

I am very anxious to hear if you have any different outcome or resources than I have had.

You guys need zippers or Velcro in your cheeks!

(Sorry, couldn't help it -- I seem to be in one of those moods today)

That would be my dream patient even with everything being normal Pete...add a detachable tongue and I'll buy the first thousand units that come off your production line!!

Christine,
All kidding aside, I also apologize for my sometimes insensitive humor, every dentist has limited Range of Motion patients (ROM) and I dread trying to work inside an already limited space in such a patient. I still do it though...why because I'm a dentist and if I apply my knowledge, skill, experience, technology and discuss everything with the patient in advance there is not much we can't accomplish.
The key is finding a dental professional who will listen to you, appreciate your ROM problem and make a treatment plan that accomplishes your limitations.
I firmly believe that given proper planning and communication that situations such as yours should not be pawned off to the "specialist or other guy".
It won't be easy for you and whomever decides to work "with" you. You may have to compromise on the ideal treatment, and it may be expensive but, I doubt that it is impossible.
For example; if you only have a 14 mm vertical opening; that is a challenge, (I like challenges in my practice, keeps my brain young, providing I am prepared for them) has anyone tested if a muscle relaxant with or without a mouth prop or even sedation for that matter gives a little more room. If all else fails you may even want to consider a general anaesthetic and have an oral surgeon dislocate your jaw have all the teeth fixed, have your dislocation reduced and then go through the recovery whatever it may be. (I am not endorsing this and have never heard of it being done. I do know however from personal experience that when I used to work in the hospital with patients under GA that I dislocated a few joints from too much pressure or opening a mouth prop too much and those patients made out fine with no long term problems.)
I guess my point is if you are willing to help someone work to find a solution even if it is not ideal, you will, over time, be able to find a reasonable solution.
I know you are frustrated and feel that no one wants to be bothered to even try to help you. That sucks!! Been there done that...not with OC but with my sarcoma.
I'm more than willing to try and answer any questions you may have and try to help you. Contact me anytime.
I'll be looking into this type of situation because if it can be done I'll find out how? and who? and let you know.
All the best and sorry for the ramble.

Cheers,
Mike

Pete:

You are a little devil

Ya know if velcro was an option, I would do it. Thats desperation for you. LOL



Thanks for the info Mike. I am very willing to try just about anything. I need to have all my teeth removed and dentures, but cant even begin to do the molds if I cant open. So goes the viscious circle or running to specialist after specialist. Ive accepted the fact that this might be as good as it gets, and Im ok with that. Overall I feel pretty good, teeth look horrible and are all loose and crooked. Luckily I do have pretty good dental insurance which will cover most of these procedures if I am ever able to get them done. My oral surgeon even got me approved for implants, but several specialists have said my jaw isnt in good enough shape for that.

Anyway, I really appreciate your detailed response. I had given up trying to find help. If I had a dental emergency I would deal with it then since nobody was able to do anything anyway. You have now given me a renewed hope to keep searching for someone to work on my teeth. Thank you very very much!!!



See JT, there is some hope for us.

If I only had a magic wand...I always said I would use it on myself first so I could be 6'2''...but, under the circumstances I think I'd send it right to you. After all, I'm pretty comfortable at my current height.
I still think there has got to be someone who is willing to try to come up with a reasonable treatment solution for you. Just how many doc's you'll have to visit to find that one diamond in the rough is the unknown.
My prayers and best wishes are with you.
Cheers,
Mike

Thanks Mike 6'2" is too tall anyway.

Honestly, my trismus doesnt even bother me anymore. Ive accepted it and still work on improving it daily, and eat what I can. If this is as good as I get, Im happy. Im here and feel overall pretty good. Im a lucky one, thats my way of thinking. Yeah I have after effects with sinus problems, trismus and dental issues, but thats ok. Many others have the same things going on or worse. It is unproductive to complain and worry about the little stuff. I really feel very blessed that I have beat OC twice and can now help others to do the same.

I am new to this post, and CG to my Mum 53, struggling with recurrence of Oral cancer of mouth-Buccal Mucosa-Stage 3. Received radiation for 45 alternate days and it recurred after 3 months. SHe refueses for any more chemo or surgery and is now on Ozone therapy and Intraenous VIt C.
Not sure if that is right or not, but not many choices.

I am loking for information on the following:
1. Trismus
2. 2 teeth hanging in her right cheek where the cancer is and the dentists say they cannot remove.

more than cacner or trismus she is cring out everyday about the pain caused by the two teeth that rub her cheek in between day and night..please reply back if anyone knows where they can or cannot remove these teeth there...PLEASE DO REPLY IF ANYONE HAS AN ANSWER!!!

There are many pain pill options here in the U.S. and you need to encourage her to demand that her pain be brought under control. It's bad enough to have to deal with the physical and mental aspects of cancer much less have to put up with pain that can be controlled.

Seema, there are two places to search here on OCF, one is here in the Forum for stuf in posts and the other is on the top of the Home Page for site articles, links and news.

http://www.oralcancerfoundation.org/

The likely (I am NOT a doctor) reason they are reluctant to pull the teeth is that there is danger of inducing necrosis in the irradiated bone -- Ask them about hyper-baric oxygen treatment (also known here as HBO) to strengthen the bone before extracting the teeth.

http://www.oralcancerfoundation.org/dental/hyperbaric.htm

Do a search from the Home Page on 'hbo' and you will get a lot of information.

I am also NOT a dentist, but it might be possible to do root canals and then grind the teeth down without injuring the bone -- I'm sure an actual dentist will chime in here regarding this!

Thank you all for replying and sharing your stories and information.

ChristineB: Yes, we seem to have a number of things in common. I am sorry to learn that your search for a solution has not been as productive as you might have hoped, particularly with the amount of investigation you have carried out.

All I can say from personal lifestyle experience is one never knows whether or not success will be just around the next corner - but what I do know for sure is that I'll never find out if I quit trying or quit looking or quit fighting off the negative thoughts that are always lurking in the foggy recess of every cancer survivors' mind(I speculate...)!

You haven't mentioned the "Therabite Jaw Rehabilitation System" and I wonder if you are familiar with it. A search of the OCF website should reveal a reasonable amount of background information, but nothing beats hands-on experience.

I was fortunate finding the device in the first place, and even more so tracking one down in Canada and then finally managing to qualify for the acquisiion of one (I am on a government disability program, and the device qualified as an insurable medical device in my situation.)

Anyway, before using the device I could open 13mm (relaxed) and as much as 18mm (stretched) with some pain. After 8 weeks of a fairly aggressive program designed in conjunction with my speech therapist (who had zero experience or knowledge of the device), I managed to open as much as 35mm when assisted by the device, or approximately 25mm stretched without the device or about 20mm-22mm relaxed, all with no pain.

Like they say: Success by the inch is a cinch, but by the yard it is hard! Sorry, I wasn't able to convert into metric. Those folks who developed the metric system should have made provision for some humour in their formulas or measurements, don't you think?

Anyway, about that time I started to notice the continued use of the device aggravated that little piece of exposed bone on my lower mandible and caused a little friction pain. It was more a discomfort feeling moreso than real pain, and I decided to give it a rest for a while. I was also curious to find out if the muscle tissue would revert back to its previous state, as the Therabite gains are not always or necessarily permanent although some have been reported.

I also wanted a break from carrying the thing around everywhere with me, and now I haven't used it since last spring. While I am certain there is a small degree of procrastination involved in my tardiness, I am determined to get back on the program, a little less aggressive this time perhaps, but back on it nonetheless.

And yes, I am sad to report that the majority of my previous gain has been lost. Today I can comfortably open a full 18mm-20mm, but if doused with a glass of ice water while showering, that opening might be significanly greater!

In view of my personal experience with the Theabite however, I would strongly recommend its use by anyone suffering from trismus.

That said, a word of caution. There are concerns about its use by those who suffer from osteoradionecosis and other side effects from radiation therapy. I am affected to some degree, but was willing to proceed anyway. However, I would suggest that anyone contemplating the use of the device to do so only after consulting with their medical advisors.

On that note I say farewell for now, and wish you continued success with your ongoing treatment as well as a long, healthy, and cancer-free life!

Sincerely,
JT2