Smoldering refers to a suppressed state. In this case the infection is present but not acute enough to be symptomatic or picked up on exam/xrays.

What still confuses me is the fact that after consultation with oral surgeon experienced in HNC, at Dana-Farber Cancer Center, Boston, the recommendation was for follow-up with general dentist. I wanted to return there for check ups but she told Bob it was not necessary. We could contact her with any questions or forward xrays to her.

We have now settled on Institute For Head, Neck, & Thyroid Cancer, NYC. I don't know what their recommendations would have been in the past. However, it is note worthy that 3 months ago, NY dentist said to leave tooth #!8 alone. This past week recommendation is for extraction. So it's the same pattern again. Don't take a chance disturbing teeth ahead of time, but eventually no option but to extract.

This tooth was also checked 3 months ago by excellent endodontist and no problem found.

On the forum we keep talking about dentists/oral surgeons experienced with HNC. Do we know if it actually make a difference in outcomes?

My ORN was diagnosed in 2010 and smoldered for 3 1/2 years. In 2011 I developed fistulae due to the ORN and also have had trismus since that time. I saw an oral surgeon and a craniofacial surgeon, both of whom are experienced with ORN. Both recommended a conservative approach. Between 2010 and 2012 I had 90 HBOT dives, occasional debridements of the jaw, panoramic X-rays. Granualation and epithelial tissue were growing in the fistula area, albeit at what I thought was a glacial pace! Then in May 2014 I had a pathologic fracture of the mandible. After the fracture I had 30 more HBOT dives. I opted for an opinion from an oral/maxillofacial surgeon who performed a partial mandibulectomy on October 8. I had no pain with the fracture, but my poor speech became unintelligible as my tongue was twisted into a small space and my trismus became worse. I knew I did not want to continue in that fashion. I did not opt for reconstruction.

Travelottie, I have not had any dental issues, and I cannot answer your question re dentists/surgeons experienced with HNC and outcomes. However, I would advise a close watch on ORN with use of the best 3D panoramic X-ray machines. Usually a general dentist does not do a pano more than once a year ~ more frequently is probably better. My ORN appeared five years after my radiation.

All the best to you and your husband.

I'm sorry to hear about your ORN. Thank you for writing to give us more information and perspective. I am angry that tx is so harsh with life altering side effects, and that's if we are lucky enough to survive the cancer.

I didn't know a partial mandibulectomy could be done without reconstruction. How are you doing since that surgery?

Hi Travelottie,
Kris has had ongoing problems with his teeth almost since radiation was completed. As far as I know he does not have ORN.
The hospital dentist in consultation with the Oncology dentist in Auckland , gave us 2 options.
1. Undergo the Pentaclo Protocol in conjunction with HBO and have most of the remaining teeth removed.
2. Root canal all remaining teeth and cap.
We were also warned that if there was even 1 cancer cell present HBO could trigger aggressive growth.
At this stage , Kris, was only a few months post salvage surgery. No further rads and no more chemo. We were not prepared to take that chance . Really we decided on the root canal option as we felt that this would buy us time. We felt that root canals would sort the immediate problems and that if his teeth continue to deteriorate , we would be hopefully , years out from treatment and he would have a lower risk of initiating rampant cancerous cell growth.
We are very fortunate that our public health system has covered the cost for us. The work has been done over a 6 month period. Currently, Kris has no ongoing dental problems, but of course what happens in a few years time remains to be seen.
Tammy

Travelottie: You are so right that the long term effects can be life altering. I have severe dysphagia and have been on a PEG tube since 2011, also brought on by my 2005 radiation. I had XRT and not the newer IMRT, which I understand may be somewhat kinder to our bone and tissues. I am doing well since my surgery, although I still look like a chipmunk preparing for winter and only storing in my right cheek. The swelling is subsiding. The stitches in my mouth will dissolve and my fistula area stitches were removed last week. Muscle spasms at the hinge area can be painful but are sporadic. Thank you for asking.

Tammy I'm very confused about the free dental care we are entitled to in NZ. I had a free temporary plate made after surgery through Accident Compensation so that I could go to my son's wedding. After RT I was given appointments with a hospital dentist specializing in oncology patients and referred to a prostho at Green Lane too, to have a new more comfortable plate made. That will now be deferred because I need so much general dental work done. I think my teeth are beyond repair and need drastic measures taken but the hospital dentist just seems to want to patch me up and move me on to the prostho. The latter told me that root fillings have to be done privately so I'm surprised Kris got them through the hospital system. I think I'm going to have to write everything I know about my teeth down together with some questions and hand it to the house surgeon I'm seeing at Green Lane on 5 November to take at least one of my teeth out.
It seemed almost too good to be true that I would get a new and comfortable plate made free by the hospital and I'm devastated that I'll now miss out this year. Do you think we pay a price for our socialised medicine in that we are less able to speed things up?

Sorry to hijack your thread Travellottie!

It seems understanding who is more susceptible is quite a mystery. Radiation is the most likely cause as radiated bone is weakened and since each of our radiation treatments are completely mapped to our unique case, it is very hard to put into categories. Also, radiation bounces off metal fillings and such and that further complicates the ability to determine where to be watchful of developing ORN.

Logic would suggest those who had cancer in the gum, jaw, or very near these areas would be more at risk for ORN but I've not come across any studies to shed more light on it.

Most don't suffer ORN and it starts over a long timeframe, just adding to the mystery.

Then you have such a difference in opinions on what is the proper protocols for watching and treating it.

Thank goodness for OCF to create a place where it can be discussed as without this it would be virtually impossible to have any idea what to expect or have practical experiences to guide one suffering it.

I used to post here long time ago when Brian Hill first started the OCF, or in its early stages anyway. Back then we were a small community of Oral Cancer survivors. Well, that, and the internet or inter web as some like to call it, was pretty new. I met Brian Hill in an AOL chatroom. Anyway, I'm a 15 year stage IV oral cancer survivor. Tongue cancer specifically. SSC. I had the jaw spit surgery and then barely endured both Radiation and Chemo. Man I was sick! UGH! But here I am 15 years later so I shouldn't even dare complain. HA! I had a pretty good run for many years UNTIL my fiasco with ORN. IMHO the ORN is worse than the cancer itself, if you can believe that! I won't die from it, but it is very disabling non the less. The best bit of advice I can give you or anyone out there concerned with a ORN DX is: MAKE SURE YOU HAVE A GOOD MEDICAL TEAM that knows exactly what they're doing and how to treat the disease. Unfortunately for me that was not the case. I was misdiagnosed at by a U of M dentist and then had the misfortune of being referred to a Maxiofacial Doctor but not one who really dealt that much or at all with ORN. All though a very respected doctor in his own right, he just didn't know what the hell he was doing. My loss. I almost lost my jaw because I didn't heal, and because of the amount of damage this Doc. did because he didn't know what the hell he was doing. Its a long complicated story and too much writing for me today, but if anyone has any questions or concerns about ORN you can certainly ask and I can answer what I know, which is a lot --- just a little too late.

One other thing I'd like to mention is that as I age, I find significant change in my oral cavity. Eating is harder for me, swallowing much much harding and I choke much more frequently. I attribute this to my dry dry DRY mouth. Did I mention I have a dry mouth?? After surgery and treatment my saliva was fairly good, not great, but adequate so I had less problems over all. I'm guessing most people are finding this to be true, or anyway long term survivors. Then the ORN and oh boy what a mess! Thank god for the Vita mix. Those machines are a god send, no question about that. Personally I wouldn't waste my money on anything but the vita mixer. I know they're expensive but a re-furbished one is better than anything else on the market today. Plus they're American made and I like that. Back in the olden days on OCF I didn't go by the name Donnamae. I think I was just Donna or Donna T back then. Its been awhile so I can't remember. I quit posting on OCF not because I didn't want to keep in touch with other survivors but because I needed to move on with my life..... talking and dealing with cancer just got to be too much for me back then. I was only 41 when dx'ed so I just needed to take a break from cancer. Period. I'm a little.... or a lot older now, and again I find myself drawn to the OCF. I think I can be of some help to those now dealing with long term affects of Radiation --- that pesky gift that just likes to keep on giving. HA! Plus I am a 15 year survivor of stage IV tongue cancer so there is hope and life after a cancer diagnoses. And its not all bad either.

Donnamae
Stage IV SSC tongue cancer
lymph node involvement
Radical neck
Cisplatin/5fu
A shit ton of radiation
2009 ORN dx

I came across this 2010 discussion in Oral Oncology: Paradigm shifts in the management of osteoradionecrosis of the mandible by Adam Jacobson, Daniel Buchbinder, Kenneth Urken

There have been many published series involving various approaches to the management of ORN. However, most of these studies represent nothing more than a particular surgeon's experience or institutional experience with the management of ORN. These studies are plagued by small patient cohorts. This makes it difficult to reach statistical significance. Additionally, almost all of the published literature is based on retrospective chart reviews rather than prospective design.The studies do not provide strong scientific evidence for management decisions when dealing with ORN.

I find this depressing and frustrating.