Radiation damage to bones of jaw

ERomanO said:

Hello Mavish. I would suggest

Hello Mavish. I would suggest a good place to start is to use the "Search by Keyword" function at the top of the main Head & Neck Cancer screen and search the word "osteonecrosis".  You'll get several hits for previous discussions on this topic, which may answer your questions, or make you think of some new ones.

Good luck!

Thank you very much RomanO.. I will.

Dave K,

Did they precribe you pentoxifilline, vitamin E, dexametasone and clodronate ? Did you try HBOT? 

I have read previos posts and I did not see any one mentioning 4 prescription medicine concurently with HBOT. I was wondering what the treatment protocols in other hospitals.

Many thanks to all taking time and responding my post.

Thank you very much for all your replies.

My dentist reffered me to an oral surgeon. The surgeon recomended surgucial removal of two teeths. I am scared, because of the risk of moremore osteoradionecrosis following the surgery.

Photodynamic laser treatment for osteoradionecrosis

As you may remeber, I was treated for rıght tonsil SCC in 2016, with surgery and RT. I had 70 gy on the tumor site and 60 gy on rıght neck that I had the 2 positive lymph nodes.

I am here to to share a good news with you.

Here is the my osteoreadionecrozis story:

Before the treatment I was told I could be back at work 3--4 months after the radiotherapy However my body responded too badly to the radiation, I had excessive ulsers in my mouth it took 18 mounths to heal. Then, I had osteoradionecrosis very early in 2018 in my upper jaw (maxilla) I did not have tooth extraction or anything to speed up or triger the osteoradionecrosis. 2 of my healty looking tooths droped on their own and left me with a big exposed bone.

Described reconstrictive surgery sounded very complicated on its own and considering my tissues are being affected by radiation, we werent sure if my tissues would heal after the surgery.a surgery complication was high. So I chose the conservative approach not to have the surgery and wait to see how far I can go without it. I had 70 hyperbaric oxigen dives, ( normally people have 40 ish), used trentall and vitamin E, prednisolon etc.. Noting helped. I was having very frequent infection spreading to my face and neck. I was on antiobiotics for two weeks and then I would be infection free for just 2-3 weeks and it was like a visous circle. Some antibiotics started nott working. I was treated one of the best Cancer Centres in Canada and my healthcare team is great. But it was noting can be done except sugery or living with it.

About 2 years ago, I moved to anotjer city. I found a Dentist here, and she offered me to include an Oral Pathologist in my care team. I said why not. But no good expectation, considering my bone is already dead. However, she mentioneed a use of photodynamic laser treatment. She told ORN is too big and it is in advance stage, but we can try. Idea seems too good to be true to me. I talked to my doctors they were not aware of this treatment modality. After thinking through 2 -3 weeks, I decided to take the chances as my situation was not great at the time and i already tried all the options except the surgery.

Dr Firoozeh Samim put me on profilactic Doxycycline treatment. I think it also increase the photosensitivity of the tissues. And we started the laser treatment. Exposed bone area decreased to the 25% of its original size of 1x2 cm in the first six months but stayed there, but I kept having laser treatmets to keep it where it is. She kept me on doxycycline. A few monts ago, the exposed bone started mobilising, and I saw my surgeon, the concern was any surgery may create a hole between sinus and oral cavity which requires reconstructive surgery. So again we decided not to touch it. 3 weeks ago the dead bone came out on its own, there was a suprisingly healty well vasculirised tissue under it.

- Officially I do not have and exposed bone or osteoradinecrosis symptoms at the moment. I will use Doxycicline for four more months and than I will be off.

- Laser treatment was painless, was taking about 15 minutes.

-I did not have any infection since I started with this treatment modality.

I know that nothing will change that I had 70 gy and my body reacted very badly. I don't know what the future is holding for me. I am feeling good now.

I am greatful to all my doctors, nurses, dietisians, dentists, dental, hygenists, physiotherapists, social workers, my family, friends, people in this group who kept me alive.

I am constently searching photodynamic laser treatment on the internet, to se what is published about it. Recently, I fould the below page of Cleavland Clinic. It seems it is aso becoming a new cancer treatment modality including head and neck cancers.

https://my.clevelandclinic.org/health/treatments/17922-photodynamic-therapy-pdt

I am greatful to all my doctors, nurses, dietisians, dentists, dental hygenists, physiotherapists, social workers, my family, friends, people in this group who kept me alive in this journey.

May God bless you!