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Joined: Aug 2007
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"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Aug 2007
Posts: 580
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


Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
Joined: May 2007
Posts: 39
JT2 Offline OP
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: May 2007
Posts: 39
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.


Age 55 at Dx,smoker 30 yrs ago, 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-surgery. Clinical remission since May 2006; Update: declared cancer free July 16, 2010! Miracles can happen...
Joined: Jun 2007
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

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Posts: 10,507
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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.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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