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Any experiences with bone necropsy?
Hello, My name is Paul, My background is that I got diagnosed with Squamous cell carcinoma on base of tongue on left side with lymph node affected on both sides of neck. Treatment was 38 radiation treatments and 6 chemotherapy treatments faired pretty good through it all. Treatments ended January 30th this year, PET Scan done in May and just had my 3 month check up in August.
In August, I started to have a swollen gum behind my last molar on bottom left jaw, i went to my dentist but couldnt find anything, so was referred to an Endodontist, which did not find any teeth problem that was creating the swollen gum, while I was there I also saw a perdontist who said i had a swollen gum and an abrasion on my lower left jaw, but could not see any bone exposure. They suggested to do a deep clean around the molar which may help the swelling of the gum.
I told my ENT that dentists did not find specific teeth problem with the swollen gum, she ordered a CT Scan top of head to mid chest, which did show thinning of the jaw bone. I had a deep cleaning two weeks later, by then I could touch the abrasion with the tip of my tongue, asked the periodontist to check it and she confirmed there was now exposed bone. I saw my ENT on Sept.17th and she indicated that I do have start of bone necropsy (ORN) and have started me on Pentoxifylline and Vitamin E 1000 IU (450 mg) and see medical in a month where at that time possibly try to scrape dead bone away down to bone with blood. My ENT also took a biopsy of the area just to rule out cancer - have not gotten results back yet.
So a couple of things,
1. My tongue is becoming irritated laying against the bone and is starting to affect my eating and talking due to the irritated portion of my tongue rubbing up against my teeth, my ENT suggested using orthidontal wax to try to adhere it to exposted bone to keep the roughness off my tongue, but doesn't stick to exposed bone. Any thoughts?
2. My ENT indicated that hyperbaric chamber therapy does not have any conclusive studies and what she has me on is protocol and studies to back it up. Thoughts?
3. I am curious if any one has gotten ORN and how that is going. I was at a cancer support group with a dentist presenting who indicated once you get ORN it is very hard to treat and stop. I am also type 1 diabetic which probably doesn't help for treatment.
Any information would be helpful.
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I am 2 1/2 years out from surgery and recovery and only now am I being told about why my mouth has not healed - bone necropsy. So your journey, as told in your own words is very helpful to me. Thank you. Scott
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3 ReactionsI have osteoradionecrosis. After several surgeries to remove dead bone that then would heal and soon would hurt again by new dead bone exposure I had a free flap surgery where they transfer flesh from my leg to my gums and provide free blood flow. I had some minor bouts of exposed bone but have healed completely since. I have other side effects as well like dry mouth and a useless thyroid. But otherwise I take good care of my teeth and pray for no cavities or exposed bone which is stable and has been for a while now.
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5 Reactions@oliverpuppy
I have had acupuncture over the last 2.5 years and my completely dry mouth is now less than half a dry mouth. I ate my first bagel in 3 years today. Good luck to you.
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3 ReactionsORN myself as well. Mandible was rebuilt twenty years after radiation. Problems with teeth and gums began somewhere between five and ten years post radiation.
I think for you currently your mouth issues are quite common for most head and neck radiation patients this soon after treatment. Typically two years post is a good target to assess what problems you still have.
I agree with the hyperbaric oxygen treatment as not proven to be much of a game changer. While oxygen is great for recovery of tissue, stopping ORN doesn’t seem to be possible. You can’t bring back the dead.
My non medical advice is to heal for about two years. Running to the dentist because your teeth and gums are sore might only increase anxiety. Your teeth, gums, jaw, neck, all will be sore for a while. Sorry to be so blunt but I have seen this happen to far to many patients. Healing from radiation takes a very long time.
Hopefully you never have to have mandible resection surgery. It’s a tough one. It is also rare among radiation patients. Good healing to you.
You are in the right place for talking about all of this. Courage.
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4 ReactionsHello everyone. I am a 67-year-old married woman, and I am currently experiencing severe pain that has persisted for three months.
In April 2020, I completed radiation therapy that successfully cured a cancerous tumor near my vocal cords (pyriform sinus). It took a solid year of extensive throat exercises, red-light therapy, and working with a wonderful speech therapist to regain my ability to speak, eat, and drink.
About three months ago, my neck began hurting so intensely that driving became difficult due to limited neck mobility. At first, I assumed I had slept wrong or jerked my head instinctively to brush off a bug while gardening. However, the pain soon radiated into my throat and intermittently into my ear—feeling eerily similar to the cancer pain I had years ago.
My ENT ordered a CT scan, which revealed an ulcer at the original tumor site. The initial recommendations were rest, increased liquid nutrition (like Ensure), avoiding coffee and yelling, and giving it time to heal.
After a month with no relief and worsening pain, my ENT performed a surgical biopsy to clean out the area. The pathology report showed necrotic tissue with bacterial colonies. Following several rounds of antibiotics and steroids without success, I transitioned to a new ENT (as my previous doctor retired). I was prescribed Cefdinir (300 mg twice daily for 14 days) to target stubborn infections.
I am now on day three of this treatment. While it initially felt like it was helping, the improvement has stalled. I can barely swallow, I am dealing with constant, distressing mucus drainage, and I am relying heavily on Tylenol for pain control. I am deeply concerned that the tissue in the irradiated area may be breaking down (radionecrosis).
Having read through so many of your stories, I wish I could wave a magic wand to ease everyone's suffering.
My question: What is the purpose of Pentoxifylline combined with Vitamin E (1000 IU / ~450 mg) for head and neck conditions? Thank you for any insights you can share.
One last thought: I had begun chewing small, chewy ginger candies—maybe five a week. I wonder if the ginger irritated the irradiated tissue... just a thought. If it did, I wish someone had warned me that the tissue remains extremely delicate and to avoid foods that could trigger necrosis!
@lonepotato, for a temporary guard that is very inexpensive, you may try "InstaMorph Moldable Plastic 3oz. Reusable Thermoplastic Beads." They run about $13 on eBay. I have used these to mold missing teeth. You heat the beads in boiling water, put the softened piece into gum area, then form the mold with your fingers. Before it hardens you can cut off and soften edges. It is worth a try. If you research the beads, many people utilize them for temporary teeth. Best wishes to you and thank you for posting the drugs your doctor prescribed for the bone necrosis, Pentoxifylline and Vitamin E 1000 IU (450 mg). I have called my ENT to ask if he will prescribe the Pentoxifylline for me...We shall see! Thanks again. This site is SO informative!
I had the same cancer, on of tongue, on the lymph nodes on right side of the neck. I had a radical neck dissection and then 7 weeks of radiation. I had preventative dental work done before my radiation to ensure long term mouth health. I did hyperbaric chamber sessions and it does promote healing. You need an expert in the field of hyperbaric chamber to answer questions. You can only have a lifetime of sessions on your body.
Very interesting on the "maximum lifetime of sessions". When searching about hyperbaric chamber stuff, there is at least one uses it more like a massage therapy type deal stating you could buy a group of 3 or 5 sessions. But when I talked to Hennepin Health Care that has hyperbaric chambers running 24 hrs a day. They said depending on your exact problem you would have 20 -30 sessions in succession (each day). I had also read about possible side effects - one being blown out eardrums which i assume is rare. If I would do hyperbaric chamber either massage style or heavy duty. I would verify with my ENT specifically to verify if it's safe for me since I had problems with my ears as a kid needing tubes put in, and i still get wax buildup.
@thomason
You can probably look it up Pentoxifylline ER, but what ENT said it would help blood flow to tissues and hence bring in more oxygen for better healing
@lonepotato...I am confused. Are you asking me a question? You insinuated the drug help necrosis, so I looked it up online. Why else would your doctor have prescribed it?