7 years on from my cancer and I have just been told that I have osteoradionecrosis which requires surgery to remove the dead/infected bone and reconstruct. It started with pain in my jaw, and developed into what everyone thought was an abscess. A month on antibiotics made no difference at all. Excrutiating pain - worse than when I was diagnosed with cancer. I had all teeth removed from the left side ( site of cancer and radiation) two weeks ago, but jaw still infected and oozing continually. I am now waiting for a CT scan to see the extent of the damage , and see my consultant again on 4 January 2011. I feel that I need to know exactly what is nvolved and what the potential outcomes are. Of course I was in shock when I was told so didn't ask much - and wondered if anyone here has had to deal with a similar situation? Would you be willing to discuss with me what happens - even if it is awful? Any help, information or advice would be very much appreciated.
Original Post
Hi Debbie.

It's Steve Ostrowski. I have been a member on this forum for years now. As soon as I saw Debbie T from Hampshire I knew it was you.

I have just put up a large post under 'Update on my life' in the Survivor Stories forum.
Catch up with you soon anyway. Let me know how the Scan results turned out
Last edited by drvinodkjoshi
Don't be scared it is a huge operation, have faith in your medical team, it will improve your quality of life. Its very daunting and i would'nt lie if i said it did'nt hurt, but its worth it in the end. Don.t be afraid of asking as many questions as you can think of to your medical team. I had my operation in August 2010 and my pain is at its lowest in 23 years. Every case is different, but help is out there. The way i dealt with it was i have a very supportive family around me, and i had no other choice. It has made such a difference to me for the better. Don't look at pictures on the internet, it will only make you feel worse. Be strong and stay positive. I was told i would be in hospital for about 5 weeks, i was out in under 2.
Thanks to Steve and DBilly...just had my scan results and it is ORN as suspected. Thankfully I was well prepared for what was coming as I had contacted Steve previously, so knew all of the gory details! I find that I prefer to know what is ahead of me. So, I need reconstructive surgery of the left mandible with a fibular flap. Looks like it will be in March sometime. In the meantime I am in a lot of pain and am not getting much sleep. Add to that the eating mushy food again (which I thought was in the past) and I am a bit fed up. Never mind. As my consultant explained - the reason that more people are developing ORN is because the treatment for the original cancer was so successful that they are living longer. I am not relishing having to go through more major surgery, but don't have an option so no point in dwelling on it. Thanks for the support. Will keep you posted.
Hello Debbie

Thank you for telling us your story. You have had one thing going wrong after another. The complications from ORN can be horrendous and you now are the unfortunate expert, poor you.

Sometimes it can all feel so useless and depressing and it is understandable. Do try an remain positive despite all. Seek counselling if you haven't been given it. It helps with coping. It is good that you have the family support you have. The family will want to treat you as part of them and you must let them and not isolate yourself. If they stretch out their hand, take it. Lots of adjustments and a new way of doing things will be needed for the new Debbie. A happy Debbie.

If you need to talk, we are here.

Best wishes

This surgery sounds very scary. I've just been told I need to have a crown for a broken tooth. I wondered if anybody had any good advice for preventing dental caries and possible future problems like poor Debbie's. I've heard of dental trays, but my dentist hasn't heard of them.

What does everybody do to keep their teeth healthy?

BTW my name is Chris and I'm just approaching 4 years from diagnosis.
Hi, I see my dentist once a month for a check up. I have flouride coating on teeth. Every night i wear top and bottom trays full of flouride. I also use Duraphat 5000 toothpaste (from docs on prescription)Floss daily and chew gum!
Hi Vinod,

Thank you for your kind reply. Yes I am having counselling, but find it is not helping much as I cannot yet 'move on', as I am still waiting for more surgery. I am being referred to a specialist unit in Salisbury thta helps people to deal with disfigurement. I think that might be more helpful as it is specific.

I find that I feel sad and depressed because suddenly I am not 'me', or not the 'me' that I have been for 51 years. I have always been a positive person, whatever the situation. Even when I had cancer, I was not at all worried as I expected everything to be fine. But now, now I am finding it very hard to be positive about anything. I think that I have run out of energy to be positive.....

At the moment my main problem is the shoulder pain. It is in both shoulders and prevents me from doing so many things that I would like to do.

Does anyone have this problem, or can anyone give me any advice as to what is causing this pain and how I can deal with it?

Any help or advice would be gratefully received.


Hi Debbie, I am so grateful to have read your posts...I am a 35 year old mother of 3 beautiful children --1 1/2 yrs, 2 1/2 yrs and 15 yrs old. I am also a 1 year survivor of stage IV SCCHN. I completed my chemo and radiation at MD Anderson in Houston last August. I have recently been told that I have osteoradionecrosis of the maxilla and around the maxillary sinus. I am scheduled to have surgery next month to remove part of my maxilla (top pallate) and other areas that maintain dead bone. I am terrified. I have already had major surgery with regards to the cancer. I had a tissue flap from my back put into my cheek, some upper teeth and maxilla removed. Then the trach and feeding tube and several drain tubes after that surgery. My daughter was only 3 months old at the time too. I'm just not sure I want to go through all of this again. Did you ever try Hyperbaric oxygen therapy??? Was anything tried or suggested before your surgery? Would you do anything differently??? I am wanting to get a 2nd opiion but just not sure where to go.
How are you feeling these days? I am very thankful for your information. Take care and I wish you the best.
Hello Jennifer

Some surgeons think hyperbaric oxygen helps, others not. The evidence is not overwhelming. I would suggest that you ask your surgeon about the planned prosthodontic rehabilitation you will need arranged following the surgery. Make sure that the maxillofacial prosthodontist is involved from the start. It helps. There will be some disfigurement but this can be reduced if the facial tissue is supported with a prosthesis.

Best wishes
Vinod Coffee
Hi Debby,

So sorry to read about what you've gone through. It must have been harrowing. I lost my tongue to cancer in 2008 and right now coping with a PEG tube and slurring speech. But, otherwise, I'm ok.

You mentioned that you've lost your energy to be positive. However, your willingness to share with us your experience and what you are going through proves just the opposite. I believe that energy is still abundant in you without you realising. You've gone through a lot Debby and I don't think you should stop now. There's always hope in the future....I know its easier said than done but we don't have a choice, do we? The only choice for people like us is to face it head on...and we can do it..take one step at a time..

Hope to see more posts from you...Oh...and I'm sure your shoulder pain will go away. Perhaps a gentle shoulder massage or exercise would help.

Do take care...

Osteoradionecrosis or death of jaw tissue, can occur in the lower jaw (mandible) following radiation therapy for cancer, administered with machines using Cobalt 60 ionizing radiation (irradiation), high energy x-rays (photons), or electron beams. Osteoblasts and osteoclasts within the bone cells may be irreparably damaged by beams or rays emitted from radiotherapy devices because they destroy and devitalize bone, eroding the jaw. Inflammation of a membrane lining of the jaw artery (endarteritis), occurs because the radiation therapy creates an environment of low oxygen for the lower jaw, decreases bone marrow cell population and abnormally lowers blood vessel growth (Please see definitions for hypoxia, hypocellularity and hypovascularity). The incidence of Osteoradionecrosis following cancer radiotherapy has been reduced by using Intensity modulated radiation therapy – IMRT which provides a more uniform dose of radiation to cancerous tissue and spares unaffected areas of the mandible (see picture below). Conventional fractionation, which involves dividing radiation into small, titrated doses with even spacing between radiation treatments and careful attention to dental hygiene also have been proven to prevent necrosis of bone following irradiation.

The leading cause of Osteoradionecrosis damage is due to harm to the inferior (lower situated) artery located in small saclike (alveolar) structures in the jaw. The first event that triggers Osteoradionecrosis is damage to osteoclast bone cells, that renders them less able or unable to multiply and reproduce new bone, reducing bone turnover - the rate at which bone is broken down and replenished.

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