I have been hesitant to post on this topic once again. I am actually afraid of what I might hear back. Some background - Bob is 6 yrs. post chemoradiation. Last year a tooth was extracted, HBOT prior and after. No problems healing. 6 months later, sudden jaw pain & swelling, cleared with antibiotics. Pain has now returned.

I, of course, have been worried about ORN since initial dental problem. We have a wonderful local oral surgeon who advised consultation at cancer centers. We went to a dentist consulting at Dana-Faber in Boston and NYC. Bob is now at Institute for Head, Neck, & Thyroid Cancer, Mt. Sinai Hospital, NYC (several hrs. from our hone). Oral Surgeon, Dr. Daniel Buchbinder and ENT, Dr. Urken.

Based on 3D cone beam scan, the dx is very early stage necrosis of mandible. In addition, another tooth needs extraction. The team offers some hope that progression might be gradual, but no real way to determine how it will go.

My questions:
- I forgot to ask when cutting tooth down, leaving root intact is done. I will ask MD this directly, but wondering if anyone has info.

- I believe an Australian poster was advised to grind teeth down and let them fall out on own.

- Is there anything else I should do?

My husband is taking this in stride. I want to trust this team, but am anxious about lack of clear protocols and depressed about jaw replacement in our future.

I'm sorry to hear this. I am a proponent of the positive studies done in Europe using a protocol called PENTOCLO. Pentoxyfilline/alpha-tocopherol/Clodronate. We can't get Clodronate in the US and it is called PENTO here. The people in the studies for the past decade have shown very good results. Here is a summary of the latest study from UCLA.

http://c.ymcdn.com/sites/www.scdaon...terials/The_Efficacy_of_Pentoxifyll.pptx

I do know from experience that it takes me a certain level of exercise/exertion to see results but it is miraculous. I believe this has prevented serious deterioration of the non-marrow producing cervical vertebrae. The improvement in blood flow has helped regain and maintain significant muscle.

You're in good hands with these two doctors. It's really Beth Israel, but Mt. Sinai took Beth Israel, and their other hospitals under their management several months ago, but still keep their former names. I was just there on Thursday, Mt. Sinai Beth Israel, Union Square, but I see a different Oral Surgeon.

Good luck.

I agree with Ed. Our Hospital Dentist recommended the PENTACLO protocol for Kris. However , we decided to have all his teeth root Canalled and crowned.
We too , now have to wait and see .
Tammy

Sorry to hear about the ORN. Not much to offer what to do. One thing I picked up along the way other than the standard HBOT is having a specialist who is very familiar with oral cancer survivors and is part of a team including the RO who brings in the details of the radiation plan and treatment into the discussion.

This makes a lot of sense to me as it provides much more detail where potential bone damage is likely and what might occur if teeth are extracted in those areas. Areas not receiving much radiation should be less risky than areas that were hit hard.

If one subscribes to the goal of leaving the tooth and bone alone then grinding teeth to the gumline seems like it provides more time and less disruption to the bone area.

I collect as much knowledge about ORN but hope to never have to open that folder.

Good luck, keep us updated.

As far as letting all, even one, teeth grind down to the gum line can be painful with the nerve intact, have risk of infection, as was my experience. Root canals are an option, but for 32 teeth? Plus being capped sounds expensive, and is not covered by Medicare. I need all my teeth removed now, and are down to the gum line, and have chronic infections, abscesses, which any can turn serious, been on an off antibiotics two years, did HBOT, so I need them surgically removed, which surgery is scheduled for next month under anesthesia. I'm going for my 3rd pre-op exam due to the delays. No plans for dentures yet, not covered by medicare either, one step at a time.

There are no clear answers, and different in each case. Good luck.

Thank you all for responding.

PaulB - we were also at Union Square this past Thursday. I'm glad to hear that you have confidence in this team. That does help me. No clear answers make me crazy!

Uptown - I am unable to open the link, but have made note of PENTOCLO.

Tammy - Can you tell me amy more about how you decided on root canals/crowns? That was in place of PENTOCLO protocol?

Don - yes, an entire team is involved, as you mention.

We were advised that it was too late to perform root canal or cut down the wisdom tooth that was removed last year. Something showed up on x-ray in 2009, one year post tx. At that time, RO & oral surgeon recommended not to do anything, as long as tooth was asymptomatic. By the time tooth starting hurting, we were told there was no choice, it had to be extracted. I do understand the advice to not disturb the jaw ahead of time.

[quote]We were advised that it was too late to perform root canal or cut down the wisdom tooth that was removed last year. Something showed up on x-ray in 2009, one year post tx. At that time, RO & oral surgeon recommended not to do anything, as long as tooth was asymptomatic. By the time tooth starting hurting, we were told there was no choice, it had to be extracted. I do understand the advice to not disturb the jaw ahead of time.[/quote]
I'm curious about the events after 2009 when the xray showed something. How often was his teeth rechecked during that time? At each visit, was he told things looks the same then all of a sudden years later he hears "too late"?

Your experience will provide many of us here with more things to watch for as each year passes and we protect our teeth. Thanks

Don,

Oral-Maxillofacial Surgery report:
2009 xray suggests increase in periodontal ligament with potential furcation involvement. Early signs of apical pathology associated with #17 may be result of radiation induced ischemic changes. Patient is clinically negative. Suggest endodontic evaluation, observation, proceed when symptomatically mandatory. RO agrees. Endodontic eval on #17 was negative. Several other root canals performed.

Since 2009, teeth cleaned and checked every 4 months. Periodic bite wing and panorex xrays. No changes noted on #17.

9/2013, dull aching pain. Consultations with oral surgeon at Dana-Farber Cancer Center & local oral surgeon. Both agreed irreversible pulpitis & periapical periodontitis. I asked exactly what you are asking - why was this not picked up sooner if his teeth were being closely monitor? I was told that teeth sometimes have a smoldering infection that is not detectable in early stage. I don't know if that is really true.

I have read some studies that I will try to summarize and post tomorrow.

[quote]a smoldering infection[/quote]Humm.. I looked that one up and could not find it, must be quite rare.

So during that four years he was going to a general dentist for cleaning and checks? If so, it is surely possible something subtle might be overlooked or below any threshold to mention or take action on a non-radiated HNC survivor.

Reinforces finding a dentist who really does have experience treating radiated HNC patients as our mouths don't behave or act the same as the general public. I'm not implying that is what happened here but one does wonder.

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.

Donna,

I am trilled you surfaced after 15 years! And nearly 10 years of silence here on OCF. I bet you get the record for lowest number of posts in 10 years. LOL

Your feeling about ORN is similar to how I view it and it just seems so little is available to assist those to do as much as they can to prevent or minimize it. Maybe there nothing we can do about the actual ORN but certainly a lot can be done in dental care to avoid aggravating the situation.

Your point about a top rate team to treat the ORN is a good one. What do you recommend to all of us in building a team that cares for our oral cavity to hopefully prevent ORN from showing up in the first place?

This is something just not very clear to me and I have tried to make progress in exactly what specialists and qualities and experience they have to best care for my dental and oral needs.

The advice given to the general public about ensuring their dentist does thorough oral cancer screening is simple compared to what is best for a OC survivor who wants to have the best care post tx, watching for signs of ORN and doing everything to prevent it in the first place.

I'm about 16 months post and still struggle a lot with what even some of these folks do such as a "Maxiofacial Doctor". Just what the heck is this speciality? I know to have a good general dentist to watch for the basic stuff but I want to have others who can support everything odd and unusual that we chemo and radiated OC survivors might experience.

I don't lose sleep over it but ORN is right at the top of the list, even higher than recurrence as I believe there are things one can do now whereas recurrence is in God's hands.

Don, ORN has never been on any of my lists. I don't know that there is a lot you can do other than things like PerioSciences products that have been shown to repair early stage ORN and read up on studies. There are so many things that can pop up, you will never be ahead of the curve when you're number is up.

At 16 months, I would look for a "Dental Oncologist". They study cancer related and especially radiation issues. I found the first one by asking the Cancer Center where I was treated. The second one I found through OCF and my wife, simultaneously.

First, I would put together a list of things you want to do. Before the "Bucket List" came out, I used to call the list "The Top 10 Things You Want to do Before You Die". I encourage people to compile that list after diagnosis. Then you just keep on tackling the list till it's done.

Now get out there and do some living to keep your mind from wandering.

I have read that less than 20% of oral cancer patients with radiation to the oral cavity will develop ORN. This figure was in a general article about head and neck cancer with no indication of scientific study to back the figure.

In my own experience I have tried to identify factors that contributed to my ORN in addition to the direct shot of XRT through the mandible. 1.I did not have any blocks or masking for my multiple fillings and several crowns during my 60 Gy. 2.I used bisphosphonates (Fosamax) to treat osteoporosis for about 10 years, and it is known that bisphosphonates can contribute to osteonecrosis. Osteoporosis was diagnosed in my early 50's. My SCC was diagnosed when I was 57. In retrospect, given my SCC dx, there are changes I would have made: 1.I would not have taken bisphosphonates. My PCP and my MO both encouraged continued use after my SCC dx. I made the decision to discontinue Fosamax about 6 years ago. By the way, I have reduced the osteoporosis dx to osteopenia through diet, exercise, natural supplements of calcium/D. 2.I would have thoroughly researched the radiation plan and have addressed blocks, etc. for radiation scatter. 3.After radiation I would have located a dentist familiar with oral cancer and ORN and questioned each panoramic X-ray re signs of ORN.

donfoo and others who have addressed the lack of medical resources for patients with long term radiation effects: My cynical take is "Follow the money." I talk with my current medical team about the lack of professionals in this "field" and encourage other patients to do the same. Unfortunately, I don't anticipate much change. Education for patients is crucial, and we can do that through our participation in SPOHNC, the Oral Cancer Foundation, other patient-active organizations.

Zenda, thanks for the 20% figure. I wish I knew where that came from. To me it seems a little high. Im just thinking of the members here and in my (uneducated) opinion it seems like maybe 10% get ORN. Im also not one to worry about numbers, anyone who has or gets ORN has their hands full. Doing HBO is no picnic but its necessary.

Wishing you all the very best with everything!!!! You are correct with how important education is! Thanks for everything you do to help fellow OC patients!

Be well my friend

15 years ago with conventional radiotherapy it was about 15%. These days with IMRT it's a rare event, more so in oral cancers, with rates from 0-5%, a little higher with Brachtherapy, and Chemoradiation.

Sorry to hear about this news. My biggest fear is ORN

msweet55, try hard to not worry about what can be. There are almost endless possibilities but you will know when you get there. Would you be afraid to go out in the rain after getting your best clothes on if there was 0-5% chance of rain or would you strut out there without worry?

I used to be afraid of every little thing that was "different" and my otolaryngologist told me there was a million possibilities and he would be the first to tell me what was really going on. It changed everything for me.

Hi I have an appointment with the Oral surgeon tomorrow and was in pain the last couple of days, happened to look on the bottom left side and see exposed bone. Is this ORN, I am in pain and can't eat. I had trouble and notice a sharp point but now this looks worse. Is this what ORN does? I have only been six month out of surgery with three pulled teeth. Anyone have any insight that this is what ORN looks like. I guess I will find out tomorrow. Thanks, Michele

ORN is when the jawbone dies. It can break apart and actually shatter in places. Shards can protrude from the gums and can be extremely painful. If untreated, the jawbone will only get worse and more painful. You are doing the right thing by getting checked out right away. Im hoping you do not have ORN! But if it is you are on the right path to getting it taken care of.

Keep us posted. Best wishes!!!


Here is info from the main OCF pages to learn more about ORN.... ORN info

Thank you, Christine so its seems that it is exposed bone to the jaw and that what I think I see. Could you explain what debridgement is? thanks Michele

Hi,
I had a very similar situation. I had two teeth extracted before treatment. One was not so great and came out pretty easily. The other was not bad but it would likely go bad sometime in the future so I had it pulled. It was really nasty to get out.

About 6 months later I started seeing bone show through my gums and it freaked me out as I thought it was ORN. I went to the oral surgeon who felt it was a tooth fragment that was finding its way out. I went back a couple times and sure enough it did finally surface to where I felt the little piece and then it all healed up.

From my research ORN will show up more like a couple years or more past treatment. It takes awhile for the lack of blood supply to finally degrade the bone structure to where it becomes an issue. That is if it ever shows up at all, which is a fairly small percentage. Good luck

Debridgement is removing the damaged or diseased tissue. Debriding is basically the same thing. My doc would use that term when he was explaining about doing reconstructive surgery. To me, it means to redo or adjust a previous procedure. Like if an OC patient has a tongue free flap and its too big, the surgeon will remove a little piece to resize the free flap making it fit the patient better.