Simon has, for the last fortnight, pain in his jaw joint. If he hadn't had rx, you would say he's done some ligament damage from the way he describes it. It is tender when he eats, but when he applies pressure to the joint the pain lessens. Does this sound like radioosteonecrosis?

He has an appointment with his ENT on Friday, but no-one has mentioned HBO, whereas when I research HBO it is suggested it is used to PREVENT or treat "necrotic" tissue as a result of HN cancer radiation therapy. If that's the case why don't patients have the option before or during rx, or is necrosis not so common? Fremantle Hospital has extensive HBO facilities, so I know he'll be able to have the treatment if needed, but am surprised it wasn't spoken about during the course of treatment as a possible side effect.

Osteoradionecrosis is death of the bone where a patient has had radiation. It can be very painful. I am not sure about by applying pressure it will relieve the pain. It could be several things including TMJ or even just plain old scar tissue.

I have done 125 HBO 'dives'. Its not a difficult thing to do at all. I do not know why it is not standard protocol. Maybe you answered that yourself by saying not that many patients end up with osteoradionecrosis. Im not sure. I can tell you all about HBO. It may require tube to be placed in the ears prior to beginning any treatment. Thats not a big deal either, outpatient surgery and being sore for about a day afterwards. By doing the tubes the patient avoids having any hearing issues relating from the pressurized tank. My HBO was a 2 hour deal, takes about 5 minutes to go 'down' and 5 minutes to come back 'up' with about 1 3/4 hour in the tank. The doc will check blood pressure and heart rate before and after. Some facilities have large group HBO tanks where I was treated it was individual glass cylinders. No makeup, metal, books, newspapers, cologne, dentures, even no deodorant is allowed in the tanks. My nurse would tell me if you werent born with it, it doesnt go it with you. The exception is a clear water bottle with the label removed is allowed in. HBO can cause temporary vision changes. If that happens he will begin to notice it around the first 2 to 3 weeks. It takes about the same amount of time to change back after HBO has finished.

Any other questions you may have, please ask and I will try to answer them.

I just checked with my doctor about HBO for the necrosis I am experiencing in the tissue in my mouth. He said they do not like to do HBO until you are 6 months out from a clear PET scan as HBO is intended to increase the oxygen in the tissue and bone. If you still have a trace of cancer, the HBO may help it to grow also.

Considering your jaw issue; I have some pain also. My team is telling me that there are so many different issues involved with radiation that it is difficult to determine exactly what is causing the pain if they do not have a pretty obvious sign (like exposed bone).

I was told that it could be the result of fibrosis or it could be nerve damage or it could be deep necrosis of the bone. They said it can take months of observation to narrow this down. I am only out about 3.5 months so they are still just watching and checking my symptoms. My pain is very much less now so I am optimistic it will slowly fade away. My dentist and I are keeping an eye on my gum line and the bone there and I have a chiropractor that helps with my still muscles and the fibrosis but for now that�s that best I can do.

Hope things start moving the other way for you and you might consider checking with a chiropractor regarding a masseuse who is trained in dealing with fibrotic tissue.

My jaw joint is sometimes sore. Acupuncture generally relieves it... Have a great day.

We have been dealing with Osteonecrosis for some time now since Steve finished his treatment just over 3 years ago. We've also had to deal with osteomyelitis in his jaw bone just recently as well. In may this year he broke his jaw by stretching when he sat at his computer. His jaw bone was so weak it just fractured. Last year we fixed the right hand side of his jaw, this year is the left. Recently the fracture became a break right through the mandible. 2 weeks ago he had yet another surgery to fix this which involved the removal of about 3-4cm of jaw bone and then a metal plate inserted that runs from level with his left ear, on his cheekbone, down to the right hand side of his chin.

The last 3 times he's had surgery on his jaw he has had HBO. Since late last year he has completed 71 dives. It does work and is worth doing but I do know that his doctors would not even consider it unless he had biopsies prior to rule out any cancer (hence how we found out about the osteomyelitis). The HBO treatment isn't painful and we've actually found it appears to make steve's skin look better and his hair darker. He had exposed bone on both sides of his gum for over almost 3 years and the HBO has healed this, prior to the last surgery. The doctor's said that is 90% of the battle, healing that gum. If Simon does need this down the track rest assured it is ok, the treatment is relatively easy. Steve is now having minor issues with a retracted ear drum but that appears to be righting itself too. He has 3 more sessions to go. Biggest pain for him with relation to HBO is the daily trips to the hospital but from what I've seen with regards to how it works, its definitely worth doing if its required.

It is good that Simon has a facility nearby. When we started the osteonecrosis journey we were in nsw on the hunter valley and had to travel to randwick for HBO. Living in Townsville now we have a facility a 10 min drive down the road. Makes a massive difference to us. All the best to Simon, I hope it all goes ok for him.

Wendy, I'm so glad things are on the improve for Steve. It sounds like he's had a very rough ride. Thanks for your input, and to Christine, Kelly and Cheryl as well.

Simon had his ENT appointment today, and the doctor doesn't think the jaw pain is necrosis, but possibly TMJ, as Christine mentioned. Christine, that may be why they don't offer HBO before radiation - because it isn't advisable to do it when cancer is present, as Wendy and Kelly suggested.

Today's appointment is 7 weeks shy of Simon's 12 month checkup - the ENT didn't see anything dodgy, which is great!

There is a device called Therabite for TMJ. It�s a jaw motion rehabilitation device to provide better jaw mobility. Many people can not open their mouth properly after surgery and/or radiotherapy. TMJ creates terrible problems with eating, dental work etc. (not to mention pain). I haven�t used a Therabite, however several other OC patients use them. A friend in Melbourne purchased one through her dental surgeon.

Karen

Thanks Karen, I'm going to get on to that right away! I've never heard of it before. Linda

I have one. You can look them up on the web and they have a number you can all. They will get you information you may need for insurance to cover the cost. They run about $400.00

My GP wrote me a prescription and I still had to pay a deductable but it is worth it.

There are certain massages you can do for TMJ and acupuncture helps. My naturopath stabs me in the jaw joint all the time. It breaks up the knots, returns blood flow and allows for stretching.

Hi Karen (and everyone) I just sent you a FB message, but I thought in case you dont see it, I'd post here too. Can you recommend a good Dr (GP) in Melbourne please? You sound like you have a great Dentist too! I'm looking for a second opinion on my jaw/tongue (I'm currently at the Royal Melb....but I'm a little confused as to what/if Im supposed to do anything next) Any suggestions would be appreciated.
I am reading on the forum that it's no abnormal to have pain a few years out from treatment. Maybe that's what this is.
I wonder if we have it for life?
I guess I'll just deal with it like the rest of our battle!
Love to you all, Lyn

Christine, I haven't looked at your other posts... did you get dentures or any implants?