Jaw replacement surgery
Hello, it's been awhile since I have been on this site. Brief history: 2016 HPV 16 tonsil/ base of tongue. 35 Radiation at highest level allowed, 2 of 3 cisplatin treatments taken. Took almost two years to get into a natural rhythm of daily life. 2021 started having jaw pain.
Last two years spent, trying all easy solutions, medications and 40 hyperbaric treatments, 3 debriding and one bone scraping surgery. Still no relief from pain. Also cannot chew food or open my mouth enough to even get my toothbrush in! So consequently a feeding tube has been inserted.
Drs say only solution left available is bone replacement surgery. They are not painting a pretty picture of the procedure or recovery or success.
Can anyone relate and give me an honest report on how horrible or successful the outcome can be? I know everyone is different, so the good the bad and the ugly! Is what I am hoping to read about.
Thank you
Debbiel0
Comments
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Debbie, so glad to see your post I was so concerned about you. I had answered the original private message you sent me on April 25th on the 26th. I also sent a little follow-up message on the 26th of April. You did not answer back so I sent one on the 28th of April 2 days later to make sure possibly they are getting through. I sent you one more on June 3rd. I was wondering are my PM's getting through? I was also thinking that you may not have felt up to communicating because you didn't feel up to it and that is OK too we all have those times. Debbie, I can only tell you I was very concerned for you and have had you on my prayer list every day. Debbie, I will copy and paste my original message here from April 26th that has information for you. Mikemetz is mentioned, he is a member here and has written a book. He is the only one I can think of that has had the jaw resection on this site but if there are others hopefully they will see your post. His profile page shows he was last active on November 21, 2022.
Debbie, I don't have any personal experience with this but I did a search and there is lots of information out here, much more than I can list here, numerous sites and hospitals explaining this procedure in detail. I don't know what part of the country you live in but here is just one such site from Cedars-Sinai Medical Center--
Debbie just search the phrase "jaw replacement surgery head and neck"
You should see lots of results.
My response from April 26th with Mike's info you may want to private message him and if you would like to have his email as a way to double up on contacting him private message me and I will give it to you.
wbcgaruss April 26
Hi Debbie, just saw this. Believe it or not, I am always glad to hear from you. I am sorry you are still having trouble and dealing with this. I do remember you went through a debriding and they had you on special antibiotics to match the infection. You had not posted anything on the forum that anything was going on so I figured the antibiotics worked and all was well. Not so, unfortunately, I am so sorry you are going through this.
I feel privileged that you have contacted me and that you feel comfortable talking to me about your situation.
Usually from what I understand when a jaw won't heal it is from blood vessels being damaged by radiation and then an extraction of a tooth takes place, then it won't heal because of the lack of blood flow. This is infection and nonhealing. I don't remember anyone having a recurrence because of this situation. What is usually required to fix this is to have a piece of bone from another part of the body, the fibula I think, grafted in the area where you are having the problem. They remove the section of bone that is necrotic and graft bone from another part of your body.
Either way, it goes it is unsettling news and I want to let you know I am here for you, Not kidding at all and you can feel free to lean on me anytime you want. Nobody can understand what we are going through better than another H&N cancer person. Your situation is exactly why anytime a tooth gives me trouble I fear an extraction that will not heal. We live with this stuff every day, complications or the fear or should I say concern of another problem or situation from our previous treatment.
You are right it isn't until they say it is. You didn't mention if they took any biopsies and that is usually how they verify whether it's cancer or what is going on. It's usually an exam and or scoping, which they have been dealing with this so they have seen what it is and have taken a scan but a biopsy is always done.
Also, I know of at least one person on the forum that had just what is going on with you, Mikemetz. And he had a jaw resection and here is a page he mentions it-- https://csn.cancer.org/discussion/294082/checking-in-more-fun-on-the-horizon#latest.
Also here is a link to his home page and you may want to send him a note-- https://csn.cancer.org/profile/discussions/Mikemetz
Debbie, I don't have any good answers for you exactly but it's not all bad, you can get through this I know you can look at all you have gone through already like many of us have and we know it is not easy just try to keep mostly focused on other things and be as positive as you can moving forward. When I am facing something tough of course I pray to God and you can too, you don't have to be religious although that is the term that is used a lot. No just call on the name of the Lord and let him know you are facing something difficult and that you need help and reassurance and healing. And you won't be religious you will have a relationship with God and he will help you to get through whatever you face. So don't be afraid to pray and ask, God is there for all to call upon in our times of distress.
Another thing I do is when facing a tough time and I can't seem to see anything but negative and I am getting depressed I grab a piece of paper and start writing down my blessings. As the song goes count your blessings one by one. I start writing them down and before I know it I have a full paper of things I am blessed with. Even the most mundane things and things we take for granted we have I may list for they are all Blessings. Such as my sinus isn't infected anymore and is staying clear and I can breathe well, I had food today, and I know there are people who barely have enough to eat, the voice of a loved one I can hear. I have a roof over my head, I could see the sun today, etc., you get the idea and you can list things past present, and future.
Debbie, I am adding you to my prayer list and I will pray for you every day for God to watch over you and comfort you and help you no matter what you go through.
Debbie I know I offered my email before and I am offering it again if you want to email direct let me know I will give it to you.
Debbie, I know you are not religious but you can call on God and start a relationship with him, whether you know it or not you are his daughter and he delights in hearing from you just like any father loves his child.
As I said I am here for you I Love you as a fellow cancer survivor and I too know what it's like heading into a tough situation like you are facing and I wish I could be there to give you a hug of reassurance that you will get through this. I know what it meant to me during my first cancer treatment to get a hug from supporters, nurses, and other cancer patients. That was pre-covid 2013 and hugs were no problem.
I care about you and I am Wishing You the Best
Take Care, God Bless-Russ
PS-I apologize for making this so long but it just worked out that way.
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Debbie, one other option I could suggest is checking and posting on the support forum of HNCA (Head and Neck Cancer Alliance)
Click the link below--
When you go there at the top bar of the subjects listed there, when you put your pointer on each one you will get a drop-down of menu items. Put your pointer on programs and click on online support community.
That will bring you to this page--
From here you will need to join and register for an account just like we do on here. It is another forum and you may want to consider it . Mike Metz was very involved with HCNA and was a representative.
Prayers your way daily
Wishing You the Best
Take care, God Bless-Russ
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Thanks Russ, you are a very kind soul! I have read Mike's book. It was interesting.
I think I missed s couple of your messages. I was in hospital for a few weeks, so maybe they went astray.
I am weighing my options right now:
1) go for the surgery, as daunting as it sounds. Do it now while I can.
2) as I have my pain management under control, and feeding tube "meals" in hand. Elect not to yave surgery at this time and enjoy life to the fullest. Deal with surgery when I have no other choice.
Dilemma: what if surgery is necessary when I am older and not able to cope with the rigorous rehab and pain? Will I regret not doing it now?
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Messages can sometimes get missed which is understandable and even with technology the way it is they get lost occasionally or don't go through.
Sorry to hear you had hospital time, that's never fun. And when in there you don't feel like messaging anyway.
I would weigh in on the fact that surgery sooner than later would be better if you are going to get it to repair the jaw. Also, the bad area on the jawbone is it continuing to deteriorate? If it is what is the possibility that you would lose enough good jawbone that it is not repairable, or is that possible, or not possible? Is the bad area just not well in that area of the bone and it can go no further anyway so you have time to just let it go till you are ready is what I am understanding.
One other thing can the bad area left go for a while till of if you decide what you are going to do will it create any issues such as can it get infected?
You have some decisions to make but no easy path it will be difficult but Deb I think you can do what needs to be done you have always been the warrior in this battle.
Wishing You the Best
Take Care, God Bless-Russ
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Debbie,
I am so sorry for what you are going through. Your story is almost identical to my husband’s. Same year, same cancer. He was 67 at the time. He had 35 proton therapy (75 gyr) and 7 Cisplatin. Everything was fine until September 2021 when he had a molar pulled - last molar on bottom left…same side as his secondary tumor. He didn’t know about HBOT at the time. It didn’t heal, bone kept extruding, etc. He finally saw an oral surgeon fall of 2022 who sent him for 30 HBOT dives before he did a debridement. Then 10 more HBOT. Wasn’t healing so had 10 more HBOT in May and a second debridement. He also started on pentoxifylline 400 mg three times a day and Vitamin E. At that point his bone looked good with only a small dark area on X-ray. And he was using chlorhexidine the entire time. Wasn’t healing, had an MRI and a CT scan. At some point in the past few months he switched from Amoxicillin to Augmentin. He couldn’t open his mouth due to inflammation of masseter muscle. Oral surgeon said one of four things was going on: infection, bone infection, ORN or malignancy (mri and scan were inconclusive). He was leaning towards ORN. Mid-July he started physical therapy and was able to almost fully open his mouth. Then towards the end of a July all of a sudden he couldn’t open it very far again and it hurt to chew. So he backed off on pushing too hard in PT and at home to give the muscle a rest in case it was inflamed again. He has only been eating soft foods (at least he can do that!). Oral surgeon had been taking panoramic X-rays and the one last week showed the dark area in lower back jaw had increased in size and he mentioned a fracture. I wasn’t at the appointment so I’m not exactly sure what he saw. Was it a crack in his jaw? Anyway, he wants to wait a month for another panoramic (Sept 21) to see if it is still progressing. If it is, then jaw replacement surgery would be next step. This has scared the s##t out of both of us. We will definitely be seeking second and third opinions. I have started researching the surgery. I saw an old post about a surgeon in Miami who used stem cells and rhBMP2. Unfortunately he has retired. We are in Park City, Utah but we are willing to travel for the surgery.
Stay strong. I may reach out to you in a month or so if he has to have his jaw replaced.
Nancy
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Nancy so sorry your husband is dealing with this. I think this is the greatest dread of Head & Neck Cancer patients.
In relation to this subject, another member of this site just posted this answer in a post and it may interest you and others. Member is Mavish.
Photodynamic laser treatment for osteoradionecrosis
Mavish Member Posts: 76 Member
Photodynamic laser treatment for osteoradionecrosis
As you may remember, 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 share a good news with you.
Here is my osteoradionecrosis 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 ulcers in my mouth it took 18 months 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 trigger the osteoradionecrosis. 2 of my healthy looking tooths dropped on their own and left me with a big exposed bone.
Described reconstructive surgery sounded very complicated on its own and considering my tissues are being affected by radiation, we weren't sure if my tissues would heal after the surgery as 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 oxygen 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 antibiotics for two weeks and then I would be infection free for just 2-3 weeks and it was like a vicious circle. Some antibiotics started not working. I was treated one of the best Cancer Centres in Canada and my healthcare team is great. But it was nothing can be done except surgery or living with it.
About 2 years ago, I moved to another 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 mentioned a use of photodynamic laser treatment. She told ORN is too big and it is in advanced 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 increases 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 treatments to keep it where it is. She kept me on doxycycline. A few months ago, the exposed bone started mobilizing, 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 surprisingly healthy well vascularised tissue under it.
- Officially I do not have and exposed bone or osteoradionecrosis (ORN) symptoms at the moment. I will use Doxycycline for four more months and then 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 grateful to all my doctors, nurses, dietitians, dentists, dental, hygienists, physiotherapists, social workers, my family, friends, people in this group who kept me alive.
I am constantly searching photodynamic laser treatment on the internet, to see what is published about it. Recently, I found the below page of Cleveland Clinic. It seems it is also becoming a new cancer treatment modality including head and neck cancers.
https://my.clevelandclinic.org/health/treatments/17922-photodynamic-therapy-pdt
I am grateful to all my doctors, nurses, dietitians, dentists, dental hygienists, physiotherapists, social workers, my family, friends, people in this group who kept me alive in this journey.
May God bless you!
Take care, God Bless-Russ
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Nancy, you are so very welcome, I made a topic main posting of it now.
I did some research on it but there is not a lot related to it on Osteoradionecrosis but a lot more on the procedure itself seems to come up with a lot of results.
Here is a result I find has some good info--
https://my.clevelandclinic.org/health/treatments/17922-photodynamic-therapy-pdt
What conditions are treated with PDT?
Healthcare providers use PDT to treat a wide range of medical issues, including skin conditions, many types of cancer and some noncancerous conditions.
Take Care, May God Bless & Watch Over You
Russ
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Debbie,
My 74 year old husband had a partial mandibulectomy fibula free flap on Dec 1 (23 days ago) to replace his lower left jaw due to ORN (the jaw had fractured). He is doing amazingly well. He had a nasal feeding tube for 2 1/2 weeks. The tube came out 5 days ago. He is chewing without pain for the first time in 6 months. He does have trismus but the physical therapy exercises for his jaw are helping. He also has swallowing exercises (the ones he should have been doing since his cancer treatment) and some exercises for his leg. I have documented his post-op journey and will be posting a summary in this group very soon. In the meantime, I’m happy to answer any questions you may have - feel free to send me a message.
Nancy
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Thank you so much for the reply.. so happy to hear your husband has had a positive result. I am in a scary position. My jaw has not fractured, yet! I am 68 yrs old, feel like I am healthy enough ( no major health issues other than radiation side effects). Dr wants to wait for a fracture b4 doing surgery.. when will that be? Never? Or in 10 +yrs when I can no longer handle the surgery/recovery.. I have had a stomach feeding tube since June.. how strongly do I fight for quality of life. My medical coverage no longer covers my feed.. cost is getting prohibitive..
Dont get me wrong, I am happy to be walking, talking ( with some slurs) and being able to enjoy my family.. but... it is getting an effort and I dont know if I should fight for the surgery or ..just enjoy what I have?
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Debbie: it’s a challenging decision. My husband obviously didn’t have a choice - the jaw fracture forced him to have the surgery. I will tell you that he is eating regular food and very much enjoying it. He does eat rather slowly. Not sure if that’s a swallowing issue or that his chewing muscles are out of shape from lack of use. I also found 2 (rather expensive) protein powders that he likes which is helping him with weight gain and additional protein for healing
I don’t know where you are located, but his 2 surgeons in Salt Lake City were outstanding. John’s primary surgeon has been doing this surgery for 25 years and estimates he has done 1000 of them. He shared how the surgery has changed over time and some “lessons learned”, eg, they bandage the leg and put the boot on in the operating room, remove the boot on day 3 post-op but do not remove the bandages until the patient is discharged. When they used to change the bandage while the patient was in the hospital, many legs became infected.
Perhaps you can a get a second opinion. Is the necrosis stable or is it aggressive? We looked at x-rays from May to July and saw a significant increase in the amount of necrosis leading to the jaw fracture. If his necrosis had been in an isolated area and not progressing, I don’t know that he would have opted for the surgery. On the other hand, he had been dealing with mouth issues since the molar was extracted in October 2021 and was tired of the pain, the hole in his gum that he had to constantly clean out with a syringe, the soft food diet, and the many visits to the oral surgeon. He wanted the problem to be gone.
Every person’s situation is unique, including pain level, insurance coverage, finances, and having someone to help you get through the surgery and post-op. I wish you all the best as you weigh the pro’s and con’s. Please reach out to me any time.
Nancy
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