Can anyone share their experience with Mandible reconstruction?

Hi @blondeboss It's called Osteoradionecrosis or bone death due to radiation. I hope that isn't the case with your husband but if it is, there is a fix for that, of course. Not a fun fix but here I sit now almost five years out eating corn on the cob with a smile albeit a bit of a pirate smile. I wrote about this with this link: https://connect.mayoclinic.org/discussion/mandible-reconstruction-with-fibula-free-flap-is-this-an-option/
Cancer is the gift that keeps on giving, whether you want it or not.
All I will tell you is to make double sure your surgical team is well versed in this complex operation. It takes several weeks to work up the procedure specific to each patient. You likely would need to travel to a large clinic or hospital somewhere to have this done. For me the choice of Mayo Clinic was due primarily because the Mayo team has trained other teams around the world in this and has likely the most experience. In addition, they were great in all areas, so great that here I am still volunteering help in this area on Connect.
Any questions please don't hesitate to ask. Courage.

So sorry to hear about your husband. I am going through the same thing right now. I have an appointment tomorrow with the surgeon and am hoping to get a scheduled date for the surgery.
I've been dealing with a fractured jaw and exposed jaw bone digging into my tongue for about 6 weeks now. Nothing is happening fast.
Prayers sent for your husband and those tending to him.

Well, I was kind of hoping that someone who’d been diagnosed with throat cancer could tell me some specific symptoms to watch out for?

Here's a link to Mayo's overview of throat cancer. I am just back from Rochester Mayo and have nothing but gratitude for those surgeons, and everyone else there. I had a tumor removed from my carotid artery by neurosurgeon Dr Michael Link, and head and neck surgeon Dr Eric Moore. Check out this website: https://share.google/gZnUaKGcQNkKSYR2O

Fair enough. After photon radiation to the throat for my SSC, within a very few years I began to have tooth issues on that side lower teeth. One tooth split which I had repaired yet ended up with a root canal. Then another root canal. Then infections in my gum in that same area. Eventually I required an extraction however the x-ray showed mandible structure to be roughly 50% of what it should be. No dental surgeon in my area wished to touch this procedure lest they break my jaw. Eventually I consulted Mayo Clinic who finally had a plan as they were well versed in this scenario.
Look for infections, pain while eating on that side, multiple tooth issues. Dental x-rays and specifically Panoramic x-rays will show deterioration of the mandible.

Appreciate your candor as well as your willingness to share such a nightmarish experience with me. Along that path did you experience a similar thought as I have that not only was your primary onocologist was not only out of his/her league but maybe even killing you? At least I have thought so. Or perhaps feeding you that all familiar line such as “standard of care” or sop “standard operating procedure”- things like that? Plus, if you don’t mind me asking the length of your survival as I do not need to know your quality of life as 2 rounds of bladder cancer, stage 4 lung cancer and presently being treated with oral chemotherapy for stage 4 prostate cancer I can pretty much glean the answer to that question? Sincerely scared, in Dayton Ohio!

My husband has survived 4 years post surgery and treatments. I had no problem with his Oncologist. She was honest and helpful and discovered some other underlying issues, leading to his fatigue and anemia.

In this journey, we now realize that his Radiologist did not give us all the information about the after effects of these treatments.

We continue to see his cancer surgeon every 6 months. It was during his visit a year ago when I asked him a question about my husband’s decaying teeth that he referred us to the dental clinic.
He is always uncomfortable discussing all the aftermath of cancer treatments.

I also feel that we did not get the support we needed.
I have worked in a medical environment previously in my life, but I was not told all the information I needed in order to correctly care for his G tube when issues occurred.
We also were not told about palliative care. It was nay last week when there was a conversation here about palliative care that I investigated and found out that that care does exist at our cancer facility. After several phone calls, I was able to make an appointment and we have an appointment today.

Other caregivers do not know or realize wat I did and I worry about them getting the support they need.

You are 100% correct about the withholding of some facts that for some odd reason besides the fact that drs. Do not believe that we are smart enough or intelligent enough to give all of the information that they have- not is it unethical but downright wrong!!

Thank you so much for phrasing everything as honestly as you did. I'm just starting out with the possibility of radiation. I have a non-aggressive cancer in my salivary gland. I had surgery and was then asked to speak with the radiation oncologist. I knew nothing going into this. The rad. oncologist pretty much told me nothing and I walked out of there knowing that they would make me a "special cap" and that I should see the dentist. Radiation would be the usual 5days/6 wks. I was told nothing more and asked to notify him of my decision. When I emailed back and said that I thought I needed to wait until I felt stronger from my surgery, I was then given the SOP you mentioned. No, it needs to start in eight weeks etc. Then when I saw the nurse in the ENT's office, she asked me who I had to help me. Help for what? She said I may need someone to drive me for the treatments. I'm 74 y/o, worked hard raising my family and never had help. So every day since that day, I have researched radiation and salivary gland cancer online. This forum has been very helpful. I never knew about any of the possible side effects, nor how long they can possibly last. I might be reading too much into everything, but I really feel people should be educated about what's possible. I wish you the best of luck.

I’m 71 years old and you should question everything, which of course pisses them off but you have every right to know “all” information that drs. have as well as every right to question everything they are trying to put into your body, but most importantly you have an exorbitant right to not only know everything but the right to participate in the treatment plan so you can research it yourself!! Be well & careful- I know that as long as I’m alive you may contact me anytime night or day. Sincerely, Robert