Conservative treatment for early and intermediate ORN, such as antibiotics, pentoxifyline and vitamin E, HBOT, debridement, Sequestromy may help resolve or arrest, but with late stage ORN, only surgery will.

Good luck

My husband has been counseled that surgery is the only option. I'm trying to find people who have had successful surgical jaw replacement.

Ive seen several members over the years who have been treated for ORN without disfigurement. You mentioned your husband had HBO 18 months ago. Since its been many months after his HBO, this is something that should be redone. Your husband was given rads for OC so unfortunately anyone who was treated with rads needs HBO before ORN surgery. I know its a pain to go thru HBO but its necessary to help prevent bigger issues later.

Depending on how involved the surgery is will determine how long the surgery will be. If your husband is able to eat, he should begin having all his favorites now. His eating will be compromised for at least a week or 2, hopefully not more than a month. After surgery a diet high in protein will help him to recover. Check with the doc if its ok to use high protein whey powder added to his liquids. He probably wont be allowed to use straws for a few weeks.

He probably will have drains after surgery, maybe a skin graft too. Swelling could be significant. Dont fret if he stays swollen for a while after the surgery. It can take months for this to dissipate. With this kind of intricate surgery, it can take him a full year for his body to completely recover. That doesnt mean he will be in pain or suffering, just that it takes a while. Dont be surprised if he isnt put back on antibiotics after the surgery. Since your husband had rads, his ability to heel is probably compromised making it take much longer. HBO will also help him to heel from the surgery.

Ask the doc if he will need a trach. If so tell them to use specifically a possey muir valve so he can talk if he is able to. Plan to spend considerable time at the hospital with your husband. If you have anyone who could help out so you can take a break, it would be a good idea to line a few helpers up. If they would each take a few hours then it will make this so much easier on you. Having someone there with him is especially necessary if he is unable to speak. Too often the medical team will ask questions and expect a reply but is he cant talk he needs someone there to be his voice.

Im sure theres lots more Im missing. Wishing you both all the very best with everything!!!

Thanks for all the info, Christine. We discussed more HBO with the Doc and he felt that it wouldn't be helpful. Do you think we should insist on it. He said studies have shown that it's not that helpful in preventing more problems.

We go next week to set up all the planning. I will ask also about the skin graft. Also once the date is set, I plan to line up helpers to give me a break while he's in the hospital so that he has someone with him so that they can be his voice.

I can't tell you how helpful it is to be able to come here with questions and concerns. Thanks you so much for all you do here.

Ive seen articles where doctors are all for HBO and then other physicians are against HBO. I can only relay my experiences and what Ive learned here. I had over 200 HBO dives over the years. My oral surgeon insisted I do the 20 before and 10 after even though I had already done HBO less than a year ago. To me, my surgery wasnt anything major, just removing a few bone fragments that had worked themselves loose from my jaw. I guess to others it may seem like something serious but after everything I already did to me, it wasnt a big deal. I had a local anesthetic, my oral surgeon pulled a couple 1/2" fragments and finished less than 2 minutes after he started.

If your husband hasnt already had a second opinion, I would advise you to have one done. Then you can ask another qualified medical specialist if HBO is necessary to repeat after 18 months.

Best wishes!!!


PS... Ive sent you a private message (PM)

I'd like to know more about ORN. My husband has refused surgery for his stage 4 ORN,that developed after radiation for oral cancer (floor of mouth). He had 30 HBO dives which allowed the progression but did not heal it. Three years later he is pulling pieces of bone out of the fistula and is in more pain than his current Norco 10 can cover. How does untreated, unresolved ORN progress? I spoke with a respite care nurse awhile back, and she gave me a brief rundown on what may happen, but i dont kniw how acvurate it is.Is there a pain med that is effective? Does ORN increase the risk of recurrent malignancy? He is 13 years out of radiation and presumably cancer free.

Im very sorry your husband is going thru this! I went back and reread your initial posts. the first post said your husband was originally diagnosed with ORN 5 years ago in 2014 so now its 7 years since he was diagnosed with ORN.

There isnt anything else that I am aware of that will fix your husbands ORN other than HBO and surgery. With it being there for so many years antibiotics (even the stronger IV antibiotics) probably wouldnt be enough to address well-established ORN.

But without having surgery to correct the ORN it will only continue to grow and the pain will increase as the ORN expands. I havent heard of a correlation between ORN which is the jaw bone dying to a recurrence of cancer.

Im sure your husband must be in significant pain with the ORN. Being in pain is not beneficial to any patient. I would ask his doc if a stronger and longer lasting pain medication such as the fentanyl patch would help him to better manage his pain. If he is in almost constant pain he would probably need at least 50mcg to start and it can always be gradually moved up or down if needed. Make sure to read and follow all instructions such as no long hot showers/baths, never to fold, bend, cut, tear rip, or otherwise damage the patch. It takes about 24 hours for it to begin working and it only needs to be changed every 3 days (72 hours). I would also ask about using a pain medication that helps to control nerve pain such as gabapentin, also called neurontin. Ask his physician if that would help him manage any break thru pain and if so to write a perscription.

I wish I had more ideas to help you and your husband. Just remember to take time for yourself too. Im sure this is incredibly difficult on you too. Try to make time for a break once in a while, even if its to take a walk around the block. A few minutes alone will help you to at least take a deep breath and clear your mind.

Best wishes with everything!!!


OCF main site--- ORN

lwilley, I had ORN which was managed conservatively for several years with HBO, debridement, and ABTs. The ORN continued its progression and I opted for a partial mandibulectomy, which was done by my Oral Surgeon. I decided against reconstructive surgery and do have facial disfigurement. My recovery was easy and I have had no problems or ORN showing up in my panoramic X-rays or CT scans since the surgery. Take a look at my posts re my history and ORN. Because each ORN case is unique I cannot address your husband's prognosis or how extensive a surgery to arrest his ORN would be. A second opinion is always advisable.

I used a Fentanyl patch for the ORN pain and found it quite helpful. I did up the dosage several times during the course of a year. No pain since my surgery and my husband still loves my smile.

All the best to you and your husband.

Hi all, I'm just heading into this. I'm almost 11 years out of treatment and now......after THOUSANDS of dollars spent on root canals, crowns and filling, they have decided we need a new plan. They are going to pull them all. I've done 20 HBO dives and after the extraction will have 10 more to do. The part that kills me is not being allowed any dentures for 6 weeks. I have some of the best Drs on the west coast working with me so I am hoping it goes well. I swear by the HBO. Thanks for listening

Don't worry, you will be fine. I had all my teeth (20 of them) pulled out November 2013....also 11 years after treatment...it will take a well to get used to denture...I still have problems with speech... I think the benefit of pulling out all the teeth actually reduce the chance of ORN...