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