Well, during the past 6 months I have been posting about my husband, Bob's, dental problem. By the way, he started out with supposedly healthy teeth. Used fluoride trays and has always had excellent oral hygiene.

Two root canals since finishing tx. Wisdom tooth extracted in 11/2013 (after agreement that it could not be left in), HBOT (prior & after), discharged from oral surgeon in 4/2014. No healing problems at all. Perfect recent Panorex x-ray.

Sudden jaw pain, a new symptom, 3 weeks ago. CT scan shows probable mandibular ORN and another questionable tooth. Antibiotics have decreased swelling. Trismus setting in.

RO, oral surgeon & ENT have been consulting. It seems there is no good solution. Considering more HBOT, debridement, and/or possible jaw reconstruction.

I have a consult at Dana-Farber Cancer Institute July 2nd. I am considering also contacting Dr. Urken at Mt. Sinai in New York. I am not certain where I should look for advice.

I am having more intense anxiety with this than I did with initial diagnosis. Watching Bob going back to eating problems, soft diet, uncomfortable opening mouth, etc. is torture. The initial tx plans back then were fairly standard and oncology office guided and helped us. I'm back to why didn't they recommend removal of the wisdom tooth in maximum rad field?

Does this ever turn out well, or even ok?
Please let me know what type of second opinions I should consider? Dana-Farber set us up with head surgeon of H&N department.

Lottie

I'm sorry to hear your husband's news, Lottie. I can imagine just thinking of what may be ahead is bringing back some of the worst memories from the days of treatment.

The back teeth in/out has been debated for years and some doctors leaning one way have even changed their minds of late. There's no guarantees in any of this, unfortunately. There have been strides made in treating ORN as well. Perhaps a second or even third opinion might be justified, if it gives you peace of mind. Just keep things progressing as it can be hard to stop if not addressed as soon as possible.

As far as outcomes, different people have experienced different results. I have seen some with exposed bone completely resolve within months.

Thank you for responding, Uptown. It's a lonely feeling dealing with these issues. We have some good support, but it's not like those who understand first hand.

When you say address as soon as possible, does that mean resecting the mandible immediately? I did not previously mention that area affected is not large, no exposed bone. Our ENT & RO have recommended antibiotics, more HBOT & possible debridement by oral oral surgeon. Delay to avoid major reconstruction.

I don't know if that is standard tx. I have no problem with second and even third opinions, but am not sure what type of doctor/facility to seek out. It's not cancer, so do you seek out ENT or Surgical Oncologist?

In the meantime, Bob is improving a little each day. Obviously, something is wrong. I wonder if it truly is ORN - and want this confirmed by another team.

A surgeon almost always recommends surgery. Imagine that. It sounds like something is being done. You might ask what the current treatment plan is.

Almost all studies point towards HBOT along with Pentoxifylline/alpha Tocopherol as about the only thing being done short of surgery. In Europe, the current push is to add a bisphosphonate that isn't available here. Ironically, one of the side effects of the treatment with bisphosphonate is ORN. Most of the studies done in Europe are also listed in PubMed. It is called the PENTOCLO protocol.

In my case, my ENT is also a surgeon so it's hard to determine where you should go. I have been funneling a lot of literature and studies to an RO and MO. It's confusing to me, as well, who would manage this part of after care.

I'm sorry to hear of the troubles, and have somewhat similar concern. I need all my teeth extracted due to radiation damage, actually chemo can damage teeth as well, and other medications, some which cause dry mouth.

Anyway, been dealing with this almost two years, which couldn't be addressed due to cancer recurrences, so was waiting for a clear PET scan to do HBOT, 20 before, 10 after extractions. Currently dealing with gum/tooth infection, abscesses. Now my oral surgeon is not sure what he is going to do with all my radiation, afraid to do HBOT, and needs to consult with my RO, Btw, both are at Beth Israel with Dr. Mark Urken, ENT. Beth Israel hospital system was recently joined with Mt. Sinai, but both are separate hospitals. To confuse matters, Dr. Mark Urken was the Otoloryncology Chairman at Mt. Sinai for over a decade. Dr. Eric Gendon, who worked under him before his departure, is now Chairman there, and has just as good a reputation, and did the first human jaw transplant.

As far as extractions, I understand root canal is an alternative as not to cause ORN. I don't know if I can do that, but will ask, but in reality my teeth have to go, what's left of them.

Good luck, and hope this helps.

Antibiotics have significantly decreased symptoms - less pain, improved eating & jaw opening.

I just made an appt with Dr. Urken in New York, in addition to Dana-Farber Institute consult. We can travel to New York city or Boston.

I am still not certain what type of specialists to seek out... will ask this directly to our local team. I received a PM from someone with ORN for years that is under conservative tx (HBOT & repeated debridement with craniofacial/plastic surgeon).

There is a SPOHNC meeting at Beth Israel, 10 Union Square East, on Thursday, June 26th from 3-5pm on the 5th floor. I'm on antibiotics too, Motrin 800, which helped a lot.

[quote]As far as extractions, I understand root canal is an alternative as not to cause ORN. I don't know if I can do that, but will ask, but in reality my teeth have to go, what's left of them. [/quote] Root canals better NOT cause ORN! I just had two done and have had 3 consults over the past few months on this topic. They all concur that the root canal does not disrupt the tooth to bone and flesh interaction.

I did get a whippin from my dentist when I told him that I did not take the antibiotics when things got a bit puffy. There is so much FUD about the decreasing effect of antibiotics I sort of only take them if I really feel they are needed. The swelling/ inflammation did resolve itself in a couple more days but he was pretty out of sorts as he said in situations like mine every sort of infection or disturbance has to be taken very seriously to avoid creating any ORN potential. I learned this lesson the hard way.

As to teeth extractions. I've been advised by all three pulling teeth is the very last resort. If at all possible the tooth would get a root canal and crown if possible. If the tooth further degrades, the tooth would be ground down to the gum line. If this degrade further I guess we are talking HBOT and extraction as a last resort.

[quote=donfoo]As far as extractions, I understand root canal is an alternative as not to cause ORN. I don't know if I can do that, but will ask, but in reality my teeth have to go, what's left of them. [/quote]

Don, you are up too late, sir. It says root canals are an alternative NOT to cause ORN. You can rest easy now. ORN is not limited to the jawbone either. It's a problem of reduced blood supply and can happen to any bone. I have been watching my spinal vertebrae for a few years now as the red marrow has died off from lack of blood. It started at C-3 where the highest dose of rads was and gradually happened to all the cervical vertebrae. I stopped getting scans since there's nothing they can do about it if it progresses.

Don,

It caught my interest that you wrote - " ....he said in situations like mine every sort of infection or disturbance has to be taken very seriously to avoid creating any ORN potential." Do you mind letting me know what type of doctor is following you for this?

Our oral surgeon, an advanced Oral & Maxiofacial Surgeon, said almost the exact same words last week. Could be the extraction (although no healing problem there), or the infection that preceded the extraction that stirred things up. Rad itself can cause ORN.

I got thinking about my husband's age. He is 71;was 66 at dx. I think the typical age at dx.is younger. Perhaps age is also a risk factor - older teeth & an older jaw.

Hi Lottie, its Michele and I had my HBO treatments and waited 3 weeks for surgery, the oral surgeons wanted to pull 5 teeth because in 5 yrs they would go bad I told him I just wanted the failed tooth that had the root canal and he said two other teeth are bad. I let him pull two back molars on the left side and one on the rt side and have been crying and regretting it ever since. I have only done 2 HBO treatment since the surgery was on a Friday and HBO started this past Monday and I an worried about infection, he told me to take antibiotics and I broke out with a rash, I am worried sick about infection and ORN I look at these big holes and hope I make it through this. I will be very pissed if I don't do well survived to operations from oral cancer and now this. Hope your husband does well. Let us know how your husband and you are doing, take care, Michele

Hi Michele,

I truly hope this goes well for you. I know you have had an awful time and the worrying is exhausting.

Who is guiding your treatment? I'm surprised that taking out extra teeth was suggested. Remember not all patients end up with ORN. I understand that at our RO center, no one treated with HBOT prior and following extraction, has gone on to develop ORN.

Hope to hear better news from you soon,
Lottie

From a reading last year, it said that ORN was not caused by infection as previously thought to be a factor, but by injury, other factors. I hope their right.

Hi Lottie, well Boston is encouraging this to a lot of patients and I just don't understand it. My dentist was very upset and besides himself and did not want me to go through with it, now its too late

There should be some kind of protocol that this is what is supposed to be done, its just crazy that everyone has a different opinion and a patient that does not know is spinning their wheels and driving themselves nuts as I have done!

I've read various abstracts suggesting treatment and management guidelines, if you call it that, but like cancer treatment, there are many different opinions, studies, results, as are the doctors knowledge and training, and some things are just not known, and involve many factors. Their not even sure about the benefit of HBOT, and some are questioning the use of it. Even pre-treatment extractions close to treatment causes just as many ORN cases as post therapy, one said, and time seems to factor in with ORN, radiation above 40Gy, one said 60Gy, but most of us had 70Gy, chemoradiation, bisphophinates, dentures, surgery, trauma, injury, and others

I wish us all good luck. I see my Oral Surgeon on Monday, Pain Mangement and Palliative Care on Tuesday.

Paul,

That is a good summary of what we are dealing with. Do you have the info on cases of ORN developing even with pre-treatment extractions?

Here is what I've uncovered:

Some of the things I found support what the our RO says: watch and wait. There are treatment protocols for phosphate induced ONJ, not for radiation induced.. at least, not that I could find. But it looks like the Radiation Oncologist goes by the BRONJ protocol. Partial madiculectomy may be necessary in SEVERE cases, Then you need the multidisciplinary team.

ORN, the National Cancer Institue says, �no clear recommendations for treatment could be established on the basis of the literature.�

FRom my reading, it seems like the role of ENT is dealing with the trismus. That seems to be a separate problem that complicates treatment and oral hygiene.

Everything I read comes from Oral and Maxillofacial Surgeons, not Radiologists.

@Uptown - you just caught my nonsensical wordsmithing. For me that's lunch time. lol

ORN is actually fairly elusive topic. Like all these posts there seems to be a variety of perceptions and not a lot of hard science or trials or studies.

My interpretation from the research I have done is ORN is caused primarily by radiation in proximity to the jawbones (upper and lower). Depending on the location of the tumors the amount of radiation striking the jawbone and teeth can vary a lot.

Not only direct rads to the bone but the "overspray" and rads bouncing off metal crowns and such all are sources of rads to the bones.

ORN does not happen in a week or a month and usually appears years post tx. My own thinking is the damage is done at the time of the radiation and over time the damaged bone and tissue are not able to sustain a healthy situation. The damage can grow to a point where bone and teeth are now unfit and some sort of treatment is necessary.

@Lottie,

My advice came from 4 dentists. One is both an oral surgeon and medical doctor, pretty smart fellow. Two are primary care dentists, and one does root canals. The two primary dentists are the most clueless, the root canal guy is pretty alert and cautious, and the oral surgeon/doctor is most informed.

As far as I am concerned I am on my own to stay on top of degrading oral structures. Any recommended procedure that seems invasive will be held until a group hug is complete to understand the full impact. At any regular checkup if anything seems at all not right, I will head over to the oral surgeon to get his input and if there is any question I will then seek a specialist who just deals with cancer/orn/HNC cases. Hope that never happens. Good luck, Don

Here's an interesting paper on cervical spinal ORN. Of extreme interest to me and my cervical spine. I find many things to read in hopes of slowing it down as things progress.

http://www.ncbi.nlm.nih.gov/pubmed/16370306

Paula I wished I had talked with Brian Hill before I had 3 teeth pulled out on June 20th and now I have an appointment tomorrow because of increased pain with the oral surgeon. As far as Brian stated I should have never had my teeth pulled, big mistake and I am highly allergic to antibiotics, so nervous, the hospital will probably have to admit me. I have been posting about my teeth problems too and talking with Lottie. For some reason some doctors are sending and referring patients to MGH oral surgeon to have teeth pulled because there are no oral surgeons at Dana. But its definitely the wrong thing to do. Hope I am not disturbing you, I feel so alone in this, thanks Michele

This is really something to think about. I remember when my son was going through treatment, and I had found OCF- it seemed that everyone surviving cancer was getting their teeth pulled, but my son's Maxillofacial surgeon, (Dr. Eric Carlson at the Univ of Tennessee Medical Center) never recommended it and I never heard it mentioned at the group meetings we had with the doctors.