Hello Forum;

I am currently faced with a difficult dilemma regarding the future of my teeth, and hope to gather as many different points of view as I can before making an informed decision.

The current condition of my oral cavity is summarized as follows: I have taken good care of my teeth all my life, and managed to retail them throughout cancer treatment except for one extraction and a few fillings that were completed prior to the commencement of treatment 3 years ago.

Treatment left me with severe trismus and little or no saliva flow, as well as some exposed bone on my lower mandible due to osteoradionecrosis. I had 40 dives in the hyperbaric chamber 1 and 1/2 years ago in preparation for surgery to remove the dead bone, but the resultant wound failed to heal and the bone remains exposed. My oncology dentist has been monitoring the wound site, and so long as it didn't cause me any pain or discomfort, we would simply leave it alone.

During my last regular examination, they took a panoramic full mouth xray, and discovered some more dental caries as well as an impacted wisdom tooth and rather than trying to restore those teeth, she recommended most of my upper and lower teeth be removed as a matter of convenience.

I still rely 100% on a stomach tube for all nutrition (except for the mandatory cup of coffee in the morning!), and it will likely remain that way for the balance of my time on the planet. In other words, I probably won't need my teeth for eating any time soon.

I met with the oral surgeon, and he is concerned about getting access to the exposed bone, and concurs with the oncology dentist that all my teeth be removed except for those in front (upper and lower)in one fell swoop under general anaesthesia in the hospital.

On the brighter side, I am not experiencing any pain or discomfort associated with the exposed bone, and would prefer to hold off on the surgical removal for as long as possible.

I have been scheduled for another 40 dives in the hyperbaric chamber in early August, and they would like me to have the surgery done after 30 or so dives, with the balance of 10 dives immediately thereafter.

I don't expect my oral health will improve at all on its own, and sooner or later I will have to face the oral surgeon. The radical neck dissection I had left me somewhat disfigured, and I am hoping to put off any further disfigurement to my appearance as long as I possibly can.

Should I just bite the bullet and get these surgical procedures behind me as scheduled, or should I hold off as long as I can or until any pain or discomfort arises?

For those of you who have experienced a similiar situation, I would greatly appreciate hearing your stories and what you would do differently if you possibly could.

Please don't worry about being sensitive or telling me like it is - after what we've been through thus far, there's little that can hurt me now.

Thanks in advance for your replies!

Sincerely,
JT2

I am a little concerned about this. This comes from your statement that you still have an unhealed exposed bone section in your mouth. What that tells me is that you mouths tissues, and boney structures, are so poorly vascularized that even with the dives you did, they couldn't heal. This is a long term infection waiting to happen. That can be a disaster. So that is the indicator of the condition of your mouth.

Your doctors want to extract all your remaining posterior teeth, which may be restorable, for convenience. If you have one section of your mouth that is not healing, what makes them think, even with more dives before and after, that the extraction sites will heal properly? Please take the time to have them explain this dichotomy to you, and get a second opinion before taking this leap. Only when you are satisfied that you will heal properly from all your sources (these guys in particular) should you move forward. I would like someone who is not part of the current team to confirm that given your levels of radiation treatments, what he has seen as healing potential in the past that allows him to believe this will be OK for you.

I have taken a different route. About 7 years out from treatment I started to get rampant class 5 caries around the necks of my posterior teeth. I have been proud of my dental health, lack of restorations, and healthy gingiva my whole life. The first two years the dentist was able to restore these with composite resin fillings. But because of my acute xerostomia, my gingiva (gums) continued to recede exposing more cementum (the material the root is made of) and that is very soft compared to tooth enamel, making it more susceptible to caries, so I kept getting more and more decay. We have chased this for several years now, and I am starting to get porcelain fused to metal crowns on various teeth that have been compromised in this way. 5 crowns in the last 8 months. I think that with these covering the exposed cementum, that I can get another ten years out of things minimum. Males in my family, with no cancer issues don't make it past their early 70's historically, and if that is my genetic timeline, I just want to get another working decade out of things.

My hygiene and all is impeccable, my tissue health is excellent, with tight, finely stippled tissue around all my teeth with no periodontal pockets. I get professional cleanings every two months as even with my strict compliance with brushing, flossing etc. I still cannot stop the buildup of plaque and calculus.

My solution may not be for everyone, I have friends in the dental community that I have worked with for thirty+ years, and the doc who is now doing the crowns won't take a cent from me, and my ex partner, one of the finest dental ceramists in the US, is doing the lab work for free as well. I pay for everything else like the fillings, even though the restorative general dentist does not want me to. I guess I am getting payback for the many years of helping them with implant cases and more, and my contributions through speaking at study groups, conventions, and universities for 30+ years. So my solution may not be affordable for non dental insured people. But I wish to die with as many of these things in my head as possible. I have seen too many people that are edentulous over the years, and none of them are really happy even when restored, particularly with full dentures.

I understand that your situation is different, and I kinda rambled on there about my own situation. But even with no NEED for posterior teeth in your mind, they do provide a positive vertical dimension stop for things. Without these, and without restoration of anything back there, you may have that vertical dimension collapse in time, and that can cause a whole 'nuther set of TMJ problems and further opening issues for you as if the current trismus is not enough.

As you all know I had to have all of my teeth removed this ast Jan. When my exwife heard about this, she was as upsetas I was. She said that noone ever took better care of their teeth than I did. I sure had a lot on money invested in them and hated to see them go. My Dentist was my buddy and he couln't believe it either . I agreed to have it done as It was deemed a necessity. I sure do miss those pearly whites, but I am alive and hoping for dentures when this tongue quits bothering me so much from the Rad implants. You have a tough decision JT2 and it's one you have to make and then live with. Good Luck with it. Jim

JT2:

Jim is an example of someone who had their teeth pulled. Im an example of not having them taken out. Your question is very difficult to answer.

I did have 3 teeth pulled prior to radiation. My teeth werent the best, but would have lasted me many more years. Im now several months post radiation/chemo and also have trismus. My teeth have suffered greatly from the radiation and are all loose. With the trismus, its next to impossible for even my ENT to check my mouth let alone having dental work done. Personally if I could go back in time I would have had them all taken and gotten dentures before my treatments.

One thing you must remember is that everyone is an individual and reacts differently to treatment. What works for one person might not work for you. Brian has made a very good point about being concerned with healing. Second opinions never hurt.

Best of luck with your decision.

Christine

JT2,

As a dentist, I never cease to be amazed at the incredibly good dental advice that Brian is able to give to people such as yourself.

I fully agree that a second opinion is in order.

Jerry

Thank you Jerry. Only you will understand this, but I started in dentistry first by trying to find a very small lower class 5 on cuspid on all my friends, for a guy who was taking his boards, then passing gold foil to him all day while he took them weeks later. I have greensticked margins on full denture impressions (Green stick! wasn't that in prehistoric times?) injected heated hydrocolloid and used a water cooled tray, around a margin of a prep while pulling epi soaked string (there was no presoaked gingi-pac material in those days. I owned a ceramic lab that specialized in a brand new technique that no one had ever heard of - Vitadur from Germany, that used an aluminous oxide core instead of a metal coping and was actually strong enough to hold up to the masticating forces. And I was the first Vita Porcelain instructor in the US back when it was originally being sold by Unitek in the very early 70's.

I have taught more students how to do full dentures, ceramics, and even chrome cobalt cast partial dentures than I can count. Dr. Kratochvil and I worked on developing the I bar passive (parallel planes design) partial denture frame work design theory in the early 80's together as I knew him when he was a Navy dentist in the 70's.

I owned the first non precious ceramic metal company in the world, when gold prices originally spiked to 800 an ounce and sold it to a Japanese firm two years later, right before the prices dropped (lucky timing not smarts). I am the co-inventor of the UCLA abutment which was the first subgingival attachment of a crown to an implant on the Branemark system with Dr. John Beumer at UCLA. Our original concept crown which was hand waxed by me to the top of the implant 4 mm deep in the tissue, (before there were machined plastic or ceramic gold components which my firm later made a fortune selling) is still functioning today decades later on a beautiful woman in tooth location number 9.

Most of the prosthetic attachments you take for granted on implants I developed when I owned Implant Support Systems Inc. (ISS), from O ring over denture attachments for all implant systems, to Hader bars. I have lectured on implantable devices at over 34 universities in the US. I was the first non doctor invited to speak at the American Academy of Oral and Maxillofacial Surgery annual meeting where I discussed the issues related to stress shielding of bone and its eventual reabsorption when implants are surgically placed at extreme angles, this in the very early days of implants when surgeons didn't understand the implications of angulation on the prosthetic outcome, let alone the bone loss by adverse loading. I also adopted Ante's Rule for crown and bridge work in a publication of the International Journal of Oral and Maxillofacilal Prosthetics for use in calculating the surface area of implants as determiners of appropriate size selection for different spans of edentulous space. I am also a contributor on a WB Saunders Publishing book on dental implants with Chuck Babbish and Axel Kirsh both pioneers in the field.

When I worked as VP of Denar the original gnathology articulator company that Dr. Niles Guichet designed the device for, it was before VHS video. He and I were lecturing in Hong Kong and we saw a street hawker that was selling little hand crank toy movie cameras on the street with porno looping 3 minute movies in them. I found the company that made them and we created a 3 minute looping movie of how to put on the Denar face bow which was a nightmare, had them put into these little hand crank movie devices, and provided them to doctors when they bought the articulator for 3,000 dollars. Now after saying that I was doing all this before VHS video, do you think I feel older than dirt? I don't talk much about my dental CV because it isn't pertinent in my life any more though I am still a lecturer at various meetings that are not OC related and I will be at the Maxillofacial Prosthetic Meeting this year talking prosthetics and not cancer. As you can see this isn't my first dance....

Before all this I was a 19 year old first responder corpsman attached to the Marines treating traumatic amputations, sucking chest wounds, and more with no doctor within a hundred miles, in the middle of a fire fight near a town I couldn't even pronounce the name of. If you are ever shot or in a horrible traffic accident, some say that I am the guy you want sitting next to you when it happens. The first time I knelt down next to a guy with tension pneumothorax and unable to breath from a bullet wound in his chest, I was overwhelmed that by doing something as simple as sticking my finger down into the wound to plug it up allowed him to inflate his lung and breath again. I will never forget the feeling of his heart beating next to my finger, nor how that event changed the direction of my life. Medicine and dentistry are all that I know.

Greenstick and gold foil. Oh boy. I used water cooled hydrocolloid for 20+ years.

Naturally I am overwhelmed. I thought I knew a lot about you, but I sure didn't.

I am very familiar with many of the things you have invented or been involved with. Some with great frequency.

You may be as old as dirt, but I'm still older, and intend to stay that way for a long time.

Jerry

Just laughing at you 2 and the age thing. You kids . LOL Brian after reading that post I am very impressed.

Brian;
First, let me apologize for the time it has taken to reply to your very informative posts on my upcoming dental decision. In fact, today is the first time I have been back to the OCF website since mid-July due to the sudden hospitalization of my Father-in-Law in July and the on-going caregiving my wife and I have provided him since. His funderal was on Oct 21/08, and with that closes a 93 year long history book. During the last few months we have been focused on health issues other than my own although I did manage to stall off the hyperbaric chamber start date three times already, which was not favorably received.

I found your dental background fascinating particularly in view of my own approximate 20+ years serving the dental community as a financial consultant. I founded a business consulting group that specialized in dental practice valuation and brokerage, transition management, and strategic planning. I got my start working for a division of Citibank Canada that provided a boutique funding service for the health professions, and this introduced me to the dental community as a whole and put me in touch with its many movers and shakers.

Along the way we grew by delivering an excellent product to our clients, but also by merging with a father & son run competitor that doubled our corporate presence. The father, a new business partner back then, was also a well known dentist/entrepreneur on the international dental speaking circuit by the name of Dr. Wayne Halstrom. Halstrom invented the Halstrom Hinge, the patented component in the "Silencer", a dental appliance that helps those who snore and suffer from sleep apnea. One of my current dentists who has provided me much support and guideance is Dr. William Liebenberg, another well known and respected international speaker on dental efficiency who you may know. Another former client & long term friend is an oral surgeon by the name of Dr. Harold Bergman who developed and marketed the first simplified titanium implant system that could be installed by a general dental practitioner. I used to attend all the regional and national dental conventions in Canada as an exhibitor (but not as a speaker...), so it wouldn't surprise me if our paths had crossed or came close to crossing at some point in the past. It's a small world, but as Stephen Wright once opined, I wouldn't want to paint it!

I really appreciate your common sense advice about seeking a second formal opinion. I met with my primary dentist, Dr. Terry McKay (he referred me to the OCF website in 2006), a week or so ago on this matter and he suggested he would contact the oral surgeon again to relay some of my concerns which I hadn't shared during our short in-the-chair consultation. To be honest, I haven't built a lot of confidence in my appointed dental oncology team, preferring to rely on my discussions with McKay and Liebenberg who I have known and sought treatment from for 30 and 15 years respectively. While they both operate very progressive, cancer-savvy dental practices in North Vancouver, BC, they are not members of my official oncology team at the Fraser Valley Cancer Centre, much to my chagrin.

A month or so ago I felt an unusual item in my mouth which turned out to be one of my lower molars that had broken loose at the gum level. I experienced no pain, but suspect that what remains in my lower mandible could become a problem in the future.

In addition to the loss of my teeth and the resultant cosmetic consequences, my primary fear is the lack of access the surgeon will have to perform any extraction or fulfill any subsequent restorative preparation, ie implants or partial dentures. McKay is confident he can maintain my upper and lower front teeth well into the future, but his concern has been basic access to the posterior area as well.

Like yourself, I maintain a constant vigil on routine preventive maintenance including power brushing and the use of various anti-bacterial and flouride rinses.

I find it interesting that there hasn't been a consistent approach to dealing with the exposed bone that has suffered the osteoradionecrosis. My dental oncologist at the FVCC suggested we monitor it over time and deal with it at the time any pain arises. After a couple of years of monitoring the site without any pain, all of a sudden it becomes an issue that requires a signidicant amount of attention. Sure there is evidence of dental caries and on-going deterioration in those areas that are unable to receive a more complete oral hygiene program. This is nothing new however, and why now?

I believe the point you have raised requires an answer. The fact that it hasn't been discussed with me other than almost two years ago when I had the 40 hyperbaric dives is somewhat unnerving. It makes no sense to me whatsoever that post-operative healing is no longer the major concern, particularly in view of the exposed bone that has not healed despite a couple of surgical attempts to remove it by an ENT specialist (a strenuous ninety minute hospital procedure under general anaestetic), as well as by my dental oncologist with a planer, and my primary dentist using various instruments, all with little or no measureable gain.

So far, it has all been about a lack of sufficient access due to trismus (a maximum non-stretched opening of 18mm between my upper and lower front teeth...), whereas healing should be of equal if not greater importance.

I shall pursue that well recommended second opinion, and if I may, will report the findings to this forum upon receipt, and hopefully obtain further insight.

Thanks again for your input to this distressing situation of mine, especially in view of the amount of time your committment and involvement with the OCF website demands of you. It is surely appreciated...

Sincerely,
JT2

Ditto to Brian's advice.
Like Jerry, I am always impressed with the superior level of knowledge that Brian has with regard to all things dental. Add this to his ever increasing knowledge of everything oral cancer, fundraising, counselling, media ...well you all get my drift he is a knowledge sponge.
We all are greatful for this and benefit from it.
I'm pretty sure that those who are in the know, Jerry, would grant Brian his D.D.S. or D.M.D. He looks after all of us making sure we get the best information available.
I know I have certainly learned a few things about my profession from him and am a better dentist as a result.

Thanks Brian!

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

Seema,
I am wondering about the "Ozone" treatment and what it is for.
Ozone can be toxic to tissue and cause problems with the lungs etc.
If there are two teeth that are as problematic for your mother as you say and would otherwise be removed in a healthy individual then I would suggest finding out the exact reason that her dentist will not extract them. If it is due to the possibility of her developing ORN during healing then hyperbaric oxygen treatment may be required before and after the extractions.
If the teeth are sound but just irritating her cheek then smoothing down the cusps may help. If they are solid but abcessed then root canals may due the trick.
Without knowing what exactly is going on I can't advise you on the most reasonable course of action.
Please let me know as much detail as you can and I'll try to help.
All the best,
Mike

ChristineB - Don't know if I correctly directed my reply to your reply, so I thought I would send it a second time. Sorry for any redundancy...

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
_________________________
Age 55 at Dx,smoker 30 yrs ago, heavy drinker 8 yrs ago; Stage 4 Squamous cell carcenoma T4a N3; 35 radiation tx, 3 chemo w/ Cisplatin, radical neck dissection,40 hyperbaric dives pre-osteonecrosis surgery. Clinical remission since May/06.

JT:

I hope you find success in your trismus and continued therapy. I found it interesting when you mentioned the exposed bone you had. I have what I thought was a splinter left from having a tooth pulled last year, but my ENT now says he thinks its part of my jaw bone. Any idea about what happened with your mandible to have the bone exposed?

I do have a therabite which I used only occassionally. This was given to me by one of our regular OCF memebers whose husband didnt need it. When I first got it, my mouth wasnt able to open wide enough to even get it in without the pads on it. I have since progressed to being able to use it occassionally. My teeth are very loose so I must be extreemly careful not to make them worse, I fear they will fall right out.

I have found my greatest success came from the help of my physical therapist. She had me use the tongue depressors in a different way due to my dental issues. She would make a stack of 3 and then slide them one by one into the center of the stack. This was not put directly into my mouth but was placed on each side of my mouth. Its not easy to explain, but it would be like I had a stack sitting on eash side of my mouth lying on my side teeth. This way there wasnt any pressure on my front loose teeth at all and my jaw still got stretched.

In 2 weeks I have appointments to see 2 specialists who hopefully will be able to help me. Sometimes it gets to me when I think about it too much. Mostly I feel very fortunate to be here and if this is as good as I get then Im still way ahead of the game.

Please keep in touch with your progress and experiences. There arent alot of us with these problems here and you have done wonderfully with the therabite. Best of luck to you.