I have developed osteoradionecrosis (ORN) in my lower right jaw as a result of radiation in 2005. Additionally I have trismus with about a one mm opening between top and bottom front teeth. I will complete 60 HBO dives on January 20. (I do still have SCC mets to a right hilar lymph node in my chest and am in a Genentech clinical trial for the cancer.) I have completed a 30 day course of oral Augmentin 875. I am having some difficulty finding the specialist to manage my ORN/Trismus from this point forward. I saw an Oral Surgeon (non MD) early in my HBOT but he has stepped out as my difficulties are "beyond my scope." Suggestions please. My clinical trial oncologist referred me back to my 2005 ENT Surgeon who immediately wanted IV ABTs although I had no infection. I certainly will return to him if needed, but it would seem that an Oral/Maxillofacial Surgeon may have the expertise for ORN. I am scheduled for a CT on January 18 as part of my clinical trial and have added "jaw" to my usual thorax, abdomen, pelvis CT. Can I expect to see improvement in my jaw in the CT, if in fact "improvement" is happening? Thanks in advance for your input.

Here is some info about my history and maybe you can pick out something that will help you. I was referred to HBO by my ENT each of the 3 times Ive had HBO. From that point, there was always a medical doctor who oversaw the HBO. Each of the 2 sites I went to HBO at had their own doctor who checked me a few times per week. My original infection was cured but with my history, I had IV antibiotics continuing for a total of 8 months. Since you were previously on antibiotics that could be why your doc wants to keep you on them. The IV antibiotics are stronger than Augmentin. I would think your ENT would be able to help you with this. Your clinical trial oncologist wouldnt handle your HBO. If you have already undergone 50+ HBO's then there should be a noticeable improvement. Best wishes with your CT scan.

Zenda,

My experience with ORN and HBO was all overseen by my head and neck oral surgeon (same as maxillofacial). I did see a regular dr in the HBO treatment area that kept an eye on things. I would recommend seeing a head and neck surgeon as well. My HBO treatments helped me heal overall but I didn't have an infection, I just wasn't healing from radiation and I had the ORN. They had to take all the teeth and bone I had left due to the ORN but I am a "special" case.

My ENT referred me to HBO. There is a DR who oversees HBO and is always there. Bless her heart she never leaves the clinic, not even for lunch. The nurses go get her lunch and she has to eat at the clinic.

A doctor must remain inside the building at all times while a patient is inside the HBO chamber. This is a requirement. Im not sure who requires it but I know both sites I was treated they told me its a rule.

Zenda, with your special circumstances it would be a good idea for you to be seeing the ENT. Thats who monitors me the closest since when I first got sick.

Best wishes with everything you are going thru and on your tests.

Christine, Brandy, and Angelia ~ Thank you so much for your insights. I do have a doctor who oversees HBOT and I have seen him twice, although he has never actually looked in my mouth. His is a very limited "scope" ~ ;-D Just three more dives for me at this time ~ Wahoo! Actually I have made great friends among fellow divers and staff for the 12 person chamber, and I love to learn so have had another learning experience. Thank you again, and thank you to the Forum for the support and platform for all of us who have had head/neck cancer touch our lives.

Zenda,

I to am an ORN/Trismus victim/survivor and can relate somewhat to your situation. I never suffered as bad as only a 1mm spacing between upper and lower teeth but did get as low as 8mm. I am now at 26mm, about half of normal for an adult male. I did a total of 40 HBO dives but still developed ORN that is currently under control. One of my greatest fears in life at this point is the thought of having to have a lower tooth extraction in the future. I am under the care of an Oral Surgeon M.D. who is very much in tune with cases such as mine and that is what I would suggest for you. It may require some searching and don't know if there would be one close to where you live. I guess I am fortunate to be close to a large city (Atlanta) to where availability was not an issue.

Good luck,

Bill Dozier