I have a diagnosis of osteoradionecrosis from an oral surgeon at UCSF (the U of CA medical facility in San Francisco). The surgeon said I could
A. do nothing or
B. undergo a complex surgery to remove the dead bone and rebuild the jaw bone with a bone graft of bone from my leg.
I have chosen to do nothing.
But I am looking for a non-surgical professional who will monitor and manage my condition -- someone in the San Francisco Bay area.
Also I'm seeking input from anyone on these boards who might have useful information.
Here are more details.
I woke up one morning with a swollen jaw. My dentist sent me to an oral surgeon who after consulting with my radiation oncologist, pulled a wisdom tooth that day. Antibiotics cleared up the infection and I did 40 2 hour hyperbaric dives. The wound was healing if slowly. All was well for about 5 months Then another infection. Antibiotics again but swelling in area under my chin remained and suddenly I had trismus, a one finger jaw opening. I'm not in pain. I can still eat and brush my teeth and talk normally.

Has anyone suggested hyperbaric oxygen treatments (HBO) for the osteoradionecrosis (ORN)? If not, I would suggest you inquire about it.

Did you have a tooth pulled prior to doing any HBO? There is something called the Marx Protocal which is 20 HBO dives prior to and 10 after any extractions. This is necessary for any oral cancer patient who has had radiation.

ORN will only get worse if it is not taken care of. An ENT who treats oral cancer patients should be monitoring your after care followup. They should be able to help you with the ORN.

I agree with ChristineB for the same resdins, and having had HBOT also.

The reason for removing the dead bone is because the necrosis will continue until it reaches epic levels and the body cannot recover. Even removing may necessitate many operations or if they truly remove the dead bone and the live bones takes to the graft, you could be past this problem for the rest of your life. There are no guarantees in Cancer world but if you look at outcomes, there is a high likelihood the professionals know what they are talking about. Seek out second or even third opinions. Doing nothing is one of those choices that often results in bad outcomes. Doing nothing is a choice/decision and you are really the only one that has to live with it.

Be well but be vigilant.

Ed

Thanks for the prompt, helpful replies.
I'm aware of the HBO protocol for extractions. I was told the tooth had to come out at once because of a massive infection. I did 40 2 hour dives after the extraction and none before.

I would try the HBO therapy again for the Necrosis, and see how that goes, but as others have said, it should be addressed as it will eventually get worse.

take care

http://www.oralcancerfoundation.org/treatment/osteoradionecrosis.html

Alex and I are grateful NOT to have any experience with osteoradionecrosis (ORN) so cannot provide any personal insight. However, there is a great article here on the website that lays out the issues, and treatments in an easy to understand format. the link above will take you there (I hope)

In addition to all the suggestions from others, long term antibiotics may also be an option (depending on your individual situation). You are right you need to find someone who will help you monitor it but I am not sure who that would be and my recommendation is probably a bit far for you to swim

My husband had ORN and had his jaw replaced two years ago.

At the time of diagnosis, he was given the same two options you have been offered: (1) schedule jaw replacement surgery in the near future, at a time that would be convenient to him or (2) wait until the bone fully broke and have surgery on an "emergency" basis. Like you, he chose the second option to wait. I think he was hoping that it would never break.

In the meantime, they put him on long term antibiotics and heavy duty painkillers. It only took another 5 months before his jaw bone broke. There was no trauma...it just deteriorated until it broke.

Although the break appeared very thin on the x-ray, it was incredibly painful. My husband had to wait for three weeks for the surgeon to be able to get to him, because he is VERY much in demand and this kind of surgery is complex and time consuming. In the meantime, the pain got worse every day until it was truly unbearable. It was a very difficult time.

He was very fortunate to have his surgery with the incredible Dr. Robert Marx in Miami. The result is excellent. My husband was 80 at the time of surgery, so they gave him a titanium jaw. I understand that they prefer a bone graft for younger patients. You cannot tell he had surgery when looking at him. He had some complications after the surgery, but Dr. Marx took care of them (more HBO and IV antibiotics).

You should take a good look at the bone deterioration on your x-ray. In my husband's case, at the time he decided to wait, the x-ray showed a spot where there was about a 50% dip in the line of his jaw bone. The extent of deterioration, if visible on the x-ray, may give you some indication of how far your ORN has progressed.

If you have pain, you should know that once my husband had the surgery (and the surgery itself healed), his pain disappeared! This is the main reason why he regretted not having the surgery earlier...he could have escaped the pain sooner. If you are not in constant pain and do not have recurrent infections, you may have time to wait.

I am not a medical person, but these were our experiences with ORN and jaw replacement. In summary, my advice would be to consider (1) the extent of bone deterioration as shown on x-ray, (2) the amount of pain and (3) the frequency of infection, when deciding what to do and when to do it. I would urge you to not postpone the solution once it becomes very clear that one is needed.

Others suggested getting a second or third opinion, and I do too. This is serious stuff, so find a skilled surgeon who has dealt with your type of situation many times. They aren't usually around the corner.

Good luck to you in making the right decisions at the right time!

We have been down the osteoradionecrosis road for about 3 years now. My husband Steve was diagnosed stage 4 SCC 2009 and they hit him with just about everything they had. Thankfully the cancer is gone and he is 3 and a half years cancer free but the side effects of the treatment have been tough.

He has had debridement after debridement of the dead bone. He's done 80+ dives of HBO. He broke his jaw in the end. All he did was have a morning stretch and heard a pop and that was it. This was in May 2012. Since then he has had a pic line for antibiotics due to an infection in the bone. He had this in for a couple of months. He has also had a very large metal plate inserted that runs from just in front of his left ear to the just the right side of his chin. That lasted for 2 months.

He has had an exposed metal plate now for 3 months as it came through the skin and has gradually come more on show over this time. It is now at a point that we can see the screws either end that are holding it in place. He is scheduled this coming Monday to go in to have his leg bone grafted into his jaw. They are taking muscle from his leg with veins as well to attach a new blood supply to the bone. The veins will be attached to the veins in his neck. He may have also a bit of muscle removed from his chest as they are thinking the skin and any tissue in his neck region is like wood (Doctor's words), from the radiation and last surgery, so they need to cover the new veins with a flap to protect it.

His jaw held off for the first couple of years. We knew there were issues but we were put on a waiting list to have it seen to. So not happy with that we moved to somewhere that we knew had the tools to proactively treat it, with HBO. Unfortunately too much damage had been done in the mean time. This is all on the left hand side but he has had a small fracture on the right side of his jaw and debridement there as well.

So my advise to you is to do what you can now, to stop any further issues. Maybe not as extreme as a jaw reconstruction as Steve is about to have but maybe they could start with HBO. Our doctors have always said "gently, gently" in the hope that they could stop this without major surgery. Sadly it didn't work but they gave it their best shot.

I'm glad you are not in pain and can still do things normally. I'm a strong believer in HBO and the healing powers it has. If its an option for you again down the track I'd go for it. All the best to you

Dr. Blende in Laurel Hts area of SF for monitoring might be a good place to start. PM me for more info including the phone number.

I always say it's better to try and deal with the problem when it's small rather than wait and have it become a BIG problem. I would do what you can now.