Can anyone share their experience with Mandible reconstruction?

I had 35 radiation treatments for left tonsil cancer about 3 years back. After dealing with the typical immediate side effects for 8-10 months or so, I was able to get 2 partial dentures and start to eat food again. It was a great victory to my spirit! The in August of 2024, I had to have a lower left side tooth pulled. The healing took a bit but I thought all was good again. Then, this past March or so, I noticed swelling and discomfort from where the tooth had been pulled. I went to the dentist, he cleaned up some bone fragments and the swelling and discomfort remained. Finally on the 3rd visit he recommended that I see an Oral Surgeon.
The Oral Surgeon tock one look at the x-rays and instantly knew what was going on. ORN had had it's way with my jaw bone where the tooth had been pulled. He se me up to come back and have the mush part of my cheekbone dug out. His first question was if the dentist or anyone had told me about HBO treatment (Hyperbaric Oxygen Therapy). When I told him no, his look was perplexed. He then explained it to me and we started down that path. (Had this been told to me by the dentist, I don't think I would be dealing with this now)
Unfortunately before the HBO could start, My jaw and nock swelled up like never before. That was then last part of May this year. I had a follow up appointment with the oral surgeon 4 days after the swelling cam back with a vengeance.
He looked at me, felt my jaw and immediately knew, the jaw had fractured. He referred me to VCU as the tops in my area to do the surgery.
After waiting for them to contact me, I finally started to try to get the ball rolling. Little did I know the fight I was up against.
My Flap surgery is finally set for August 20th. Almost 3 month of pain and discomfort that is debilitating some days.

I could go on but the point is get all of the information you can. I had no idea what to ask. I didn't know what I didn't know. The fact that these risks and or treatments for the risks were not told to me by any of my care team up front, or at any point is hard to understand. Also they will be pulling all teeth I have left. I'm hoping I can afford to have the post put in the bottom and get a denture for the top

God Bless

Robert - Thank you so much for your reply and your very kind offer allowing me to contact you again. I appreciate it. I see you've been fighting several battles and I hope you are on the winning end. There's never a day without wondering or worrying. My primary care physician told me to do whatever the radiation oncologist suggests without even asking what was suggested. I don't understand the medical field, but I know we need to be our own advocate right from the beginning and nobody will do it for is. I don't think I need a second opinion on the surgery, but a better explanation of the recommended treatment might help. Take care and keep in touch. - Darlene

Hi, I am 17 years out from stage 4 tonsil and base of tongue cancer. My surgeon was unable to get it all so I had chemo and radiation. My cancer was caused by HPV virus. Regarding teeth issues post radiation treatment I really did well first few years. Then lower teeth started to splinter, crack and cause pain. Bot sides of lower jaw. Several root canal’s were preformed to the point that my excellent oral surgeon told me I was eventually going to have all teeth removed . This procedure was completed and I asked to spend night in hospital for pain control but it really wasn’t that bad . I won’t lie to you if it hurts like a son-of-a-bitch I will tell you. No pussy footing around on this site. I went without teeth 5 months until healed enough to have 4 implants placed into jaw bone. My surgeon told me the implants will help stabilize my jaw bone, making new bone grow around implants .there are lots of things to eat without teeth. I was never hungry . Got my snap on dentures and all was okay for another few years. I began to lose weight, jaw got smaller and dentures didn’t fit. Needed full fixed arch dentures to move on. Long story short— got 4 mor implants placed, including 2 zygomatic (implants placed up into cheek bones. NO PROBLEMS!also went toothless for several more months again while everything healing. VERY IMPORTANT!
I was able to get most of cost of everything paid for by making dentist send in cancer code to primary insurance . This condition is a late effect of radiation, thus caused by medical condition covered by medical insurance. I am medical billing specialist call me if you have questions contact me anytime .
319-750-9889-thank you
I Care -Julie Hart

Darlene, sometimes I feel like like just giving up, but that’s not my way. I believe that it is a cowardly way out and I’m no coward and you are not either!! I use “my chart a lot even though it seems like the terminology may as well be Latin, but like my mamma always told me, “ I may not know the answer but I know how to find out- that’s why drs usually have aPDR (physicians desk reference) And a Merck’s manual cause it’s damn hard work to try and remember all of the things that individual things that patients might be experiencing. Also, they are not interested how the process can affect you during and after treatment. The reason? Hell they might not even know but they know what SOP is and as far as that goes they’re sure they know what protocol is and that’s the shield they hide behind. Do not go gentle into that good night- rage yes rage against the dying of the light!! Get all the info you can and research it thoroughly and if you don’t understand or are confused by anything shoot it to me and I promise I’ll beat the bushes til we find the answer. I meant what I said- anytime 24/7 I’m here for you like many people have been there for me. Godspeed, sincerely, Robert

I recommend using Chat GPT. You can put a picture of your results or type them in, along with your age and health. It puts everything into plain English so you can understand better. I went to my first oncology appt today and my dr was shocked at how much I knew.

Thank you. I looked it up but haven't downloaded it yet. I also heard about it today from a local friend. I'm guessing there are a lot of people not interested in educating themselves about their health or conditions. I want to learn.

When turning to Dr. Google, I recommend you confirm the sources. Remember, AI never gets ill or otherwise experience life the way we do. However you are wise to educate yourself as much as possible as to your condition and treatments. You don't have to learn the Latin but you should know the basics, which is far more than many patients do.

Thank you. I have read some interesting info from AI, keeping in mind there could be errors, and I have gained a wealth of information from Mayo Clinic's forums. It's been a shock learning how much I wasn't told. Again, thank you!