Hi everyone, I haven't been on here for awhile, but wanted to check back in and see if anyone was familiar with an issue that my husband, an 11 year Stage 4A oral cancer survivor, is having. He developed osteoradionecrosis 4 years ago. His dentist, another oral surgeon, and yet another surgeon at a clinic at the University of Miami (Marx's clinic) all suggested different versions of very invasive jaw reconstruction surgery with proposed outcomes that weren't very comforting to hear about. He almost went with the Miami clinic and then his Tampa Moffitt CC doctor talked him into waiting it out and suggested he may never need surgery. What led up to the osteoradionecrosis diagnosis 4 years ago was that, after a dental hygiene cleaning, he developed an infection which cleared with a course of antibiotics. This led to 2x a year jaw infections and then last year almost monthly infections. Last July, he developed a small abscess on his lower middle jaw (outside to skin) where pus was draining. We went back to the Tampa Moffitt CC doctor who now suggested jaw reconstruction surgery that had an even worst proposed outcome for him. I happened to learn about cold laser therapy at this same time, and we set out to try it before doing anything more radical. He had 9 of 12 symptoms of osteoradionecrosis when we started the cold laser therapy. He now has 3 of 12 symptoms. He still has the abscess , but for the past 3 months, he has none of the old symptoms of infection (i.e. fever, jaw swelling, jaw joint locking) when it starts having drainage. He had an infectious disease doctor check it out, and we just learned that he did not have an infection when tested. They also ran a CAT scan which just pointed to osteoradionecrosis again as the cause of the abscess. So, again, we find no doctor seems to know what to do, and we are next heading over to U.F. - Gainesville, FL, to an oral clinic related to Shands that deals with long term oral cancer issues, but it will probably take weeks to get in. I was wondering if anyone has had an experience like this, with an abscess or fistula that is draining some blood/fluid to the outside of the (lower) jaw, but with no sign of infection.

Thanks much!

Yes, this subject has been discussed on many threads. The complications your husband has do not always affect all ORN patients. If you use the search feature in the upper right corner and put in osteoradionecrosis, you will soon be reading page after page of info. There is also tons of info on the main OCF website (direct link to osteoradionecrosis below).

Main OCF pages... Osteoradionecrosis

Im sorry but I have not heard about cold laser treatments. When I did a quick internet check, it comes up on Quackwatch. From what I saw this is considered experimental. Looks to me like there is still considerable testing to be done on this treatment before it can be determined helpful for the masses.

Your husbands case sounds like it is a complicated one. Hopefully you will find some top physicians who are well experienced with treating these types of things. Usually patients with complicated cases like your husband fare best at the country's top CCCs like MD Anderson, Sloan Kettering, etc.

Wishing you both all the very best with this.

Thanks, Christine.

I checked it all out but didn't really see anything that describes his particular situation.

Also, regarding cold laser treatments, it is becoming more common now and used by chiropractors, physical therapists, sports trainers, and veterinarians. My observation is that most MDs in Tampa are very unaware of this new technology. It's been used in eastern Europe for decades, and Health Canada has also approved it for various uses, as has the FDA. It was highlighted in Chapter 4 of a 2015 bestseller by Norman Doidge called "The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity". This book was really about the use of cold laser for diseases and disorders of the brain, but it talks about it's more common uses as well.

This feels like 10 years ago when HBOT was a new therapy for oral cancer survivors. My husband was prescribed 40 dives, and I posted about it on here, and very few had heard of it at that time.

I will add that our particular use of cold laser was our own personal experiment (with a doctor's approval), and for us, it yielded good results. My husband no longer has trouble opening his mouth and can eat a fairly normal diet, it softened all his hardened scar tissue on the neck so that he has better neck ROM and little cramping, and it greatly softened up the soft tissue of the lower jaw (which was really hard when we started). The problems he had with jaw swelling have gone away. As I said, he went from having 9 out of 12 symptoms of ORN to having 3 out of 12. The cold laser did not resolve the fistula, and it did not fix the issue on the inside of the mouth with the exposed bone. But, his pain has also been greatly reduced. So overall, I would definitely call it a success for us - just not a complete success.

I believe we have actually been working with some top physicians in the field of osteoradionecrosis anyway. We went to Dr. Robert Marx's clinic at University of Miami, and my husband almost underwent their recommended jaw reconstruction surgery 4 years ago, but was advised against it by Moffitt CC, Tampa's own comprehensive cancer center and #18 overall in cancer center rankings. Next, we are headed to U.F. Shands Oral Clinic.

Anyway, it is always a puzzle to get answers and know where to turn with these issues.

Thanks for the feedback!

Connie,
If you check my threads you will find several related to my frustration with dealing with ORN. I think that we are headed down the same path as you and your husband.

My husband was diagnosed with early stage ORN 5 years post rad/chemo; one year post dental extraction with HBOT. We travel 3 hrs. to see an oral surgeon on a Head & Neck cancer team at Beth Israel/Mt. Sinai in NYC. Another appt is scheduled at end of this month due to increasing symptoms. I will let you know if I find out anything new and will check for your future posts.

Do you have a signature line you can add? It helps to see entire history.
Lottie

Im very sorry the info I posted wasnt more detailed and geared towards what you were looking for. I feel bad that its taken so many years for you and your husband.

Yes, Dr Marx is one of the top physicians for jaw surgery. I have heard very good things about him from several members and people Ive met while traveling.

Ive sent you a private message (PM). Click on the tiny flashing envelope that next to My Stuff tab near the top center of your page. Its info on how to add the signature.

Thank you

Hello Connie. I had fistulas on my right mandible that drained blood and fluid. Have a look at my posts for details. Unlike your husband I am NPO and take all fluids and nutrition through my PEG tube. That fact played a major role in my decision to forego reconstruction surgery. All the best to you and your husband.

Thanks everyone. I appreciate all your feedback. Zenda - I did go back and read all your posts more closely, so that was all very helpful. We just received a copy of my husband's CAT scan and blood work, and it was an interesting read (after I looked up about 20 anatomical words :-) Again, we have been, with our doctor's blessing, running our own experiment with cold laser therapy since July, 2015. We bought our own medical-grade cold laser machine and have used it on my husband's jaw and neck 5x a week with a few weeks off here and there. So, before July, my husband was getting infections that caused swelling, trismus, and a lot of pain. He could only eat pureed soups and soft foods until antibiotics would kick in. In July, he developed what I have been calling a fistula, but the CAT scan report calls an ulcer. Since about December, he no longer has swelling, trismus, or very much pain. He is eating all kinds of foods. He was tested for infection, and that came back clear. His soft tissue in his jaw and neck (that was like cement) has all softened, and his skin looks great. However, he still has this drainage through the outside of the lower right jaw. Not a lot at this point, but a little every day. So, the CAT scan indicates that all his right mandibular soft tissue is OK but denser than normal, and that a section of his jawline has a moth eaten appearance (due to radiation therapy) and that appears not to be a huge issue (not immediately, at least). The only thing it really calls out as an issue is a possible abscess at the root of 2 pre-molar teeth, and the accompanying 'ulcer' that is about an inch under that area. It doesn't even mention any exposed jawbone, and I'm not even sure if it is there anymore. I don't currently have access to the original CAT scan from 4 years ago. So, we're going to start cold lasering that specific tooth root area, and get him back to either the dentist or a new oral surgeon at UF Shands Oral Clinic. As you indicate you are not a fan of surgery, neither is he, and we're trying this personal experiment to see whether he can avoid it. I'll keep you posted as things progress.

I'm interested in finding out any treatments re: osteoradionecrosis of the jaw. My husband was treated with tongue cancer 9 years ago at U of C and given 7 weeks of combined radiation and chemo after having surgery. The treatment worked, but 18 months ago, he developed an abcess on a tooth and the oral surgeon extracted it and he then developed an infection which was treated with antiobiotics for six months or more. He developed a wound on the underside of his face about four months ago , just under the jaw and the head and neck surgeon we've been seeing at Northwestern put him on clindamycin several times, but it as soon as he gets off the antiobiotic, the oozing and pus begin again. The head and neck surgeon is urging my husband to have a jaw reconstruction soon. However, a good friend who is a doctor, although not a head and neck specialist, is urging us to see an infectious disease specialist to see if IV antibiotics would help. Our head and neck surgeon feels that we would only lose time this way and that more of the jaw would die requiring a more extensive jaw surgery.

I would so appreciate if anyone has had any experience with this--dealing with an infectious disease specialist. Is there any likelihood that his IV therapy would work. I'm worried that we would lose time. However, I'm not looking forward to my husband having to undergo this rough surgery. The infectious disease specialist has told him it is "a horribly disfiguring surgery."

Any input would be appreciated.

Osteoradionecrosis (ORN) is not always a disfiguring surgery. This type of intricate surgery is very individualized. Every patient is different and ORN is a prime example of this. Ive known several people who have had this done and its barely noticeable. Ive also known others who havent turned out as well and sadly yet others who have passed away due to not being treated. The longer the delay, the more difficult it is to treat the ORN.

If the surgery would result in disfigurement, reconstruction surgeries can be always be done later. If this would happen in your husbands situation, dont be surprised to hear he must wait a minimum of one year before he can have corrective surgery. So if your husband isnt satisfied with how he looks afterwards, it can get corrected down the road. After this type of surgery, swelling takes weeks to subside, healing even longer. He may need hyperbaric oxygen treatments (HBO) prior to and after surgery. Dont be surprised if he isnt on antibiotics afterwards for a short time too.

Hopefully this helps, heres more info too...

ORN from main OCF site

Thanks, Christine. He already had 30 dives of hyberbaric chamber therapy about 18 months ago, before he had the tooth (well, it was two teeth) extracted. He said it energized him, but I don't really know if it had any affect on keeping the bone from dying.

I'm concerned that this infectious disease specialist is just going to slow things down and it really irked me that he told my husband that it is "horribly disfiguring surgery."

Our head and neck surgeon, who I trust implicitly, said we could try it, but that it's probably not going to change the outcome and John would still need surgery and by the time John finished the IV antibiotics, more of his jaw would be compromised.

I'm scared of the surgery. Well, I'm scared every day of what John will look like after the surgery and how he will function. HOw do you get over being scared?

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...

I am following this thread because we are going through this as well. The oral surgeon has had my husband on antibiotics for almost eight months. He went through 20 HBO dives before he had two teeth removed, and another 20 afterward. The incision wasn't healing, he was still in pain, and would still swell up. The surgeon went in and scraped dead bone and tissue this past week and sent the sample to a lab. I have read through many posts about this condition to try to prepare myself for what could be next.I am also scared. We will find out more this week.

Hopefully the debridement does the trick, and there is no exposed bone or other complications.

Good luck