Osteoradionecrosis - free flap jaw and maxilla reconstruction

Hello @mavish. Welcome to our head and neck cancer gang. To your question, I have had mandible section replacement due to osteoradionecrosis. This was five years ago. They took a section from my fibula, which horrified me initially yet I had minimal problems with leg recovery. Jaw doing well or as well as can be expected.
There are a few discussions in this group concerning this surgery. Search above for either fibula free flap, osteoradionecrosis, Ameloblastoma, or anything related to this surgery. We are a small group. It is not a particularly common surgery. It is however a very specific surgery and should be performed only where there is considerable experience with it. You must ask your surgeons what their experience and training in this specific surgery is. Otherwise failure becomes a life sentence.
As for my experience, it was a difficult day long surgery. Lots of pre-op measurements and assessments. Total of seven days in hospital prior to home care release. Three additional weeks on nasal feeding tube. Several return follow ups. Trach did not close on its own so that had to be sewn four months later when I had my prosthetic pegs uncovered, for teeth. Although there were obstacles and recovery issues, I enjoy no major dental issues and corn on the cob once again.
Can I ask where you plan to have this done? Do you need recommendations for this procedure?

Hello @mavish. My dad had this surgery on his mandible way back in the early nineties at Ohio State James Cancer Center. It was successful in rebuilding his facial contours and supplying bone for future tooth implants. His recovery was surprisingly smooth. Unfortunately his SCC did recur orally in a different location and at age 75 chose palliative care at that point. I am certain that the procedure is vastly improved since then and would not hesitate if this was recommended to me.

Hi Sue,
Thank you so much for sharing.
I am sorry for your father's recurrence.
Sharing the experience decreased my fear and worry. Thank you!

@hrhwilliam thanks for the reply.
I am in Canada.
Surgery likely be done at Toronto Mounth Sinai Hospital ( I was treated for SCC at Princes Margaret Cancer Centre, all follow ups were there.)
I am open to reccomendations on centers experienced in this surgery

In the U.S. Cleveland Clinic is well versed in this surgery and is closest to you. The premiere clinic in my opinion is Mayo in Rochester MN. I know that PMCC is excellent in cancer treatment but I am unfamiliar with their experience and training in the surgery you need. That goes for Toronto Sinai as well. I always recommend the patient to simply inquire as to the experience in this specific surgery. Mistakes made here can be life challenging. Micro-vascular requirements as well as overall fit and build up of tissues requires a very experienced team.
I realize most of us hesitate to question our doctors and surgeons but in this instance it is paramount that you do so. I also do not know how Ontario handles referrals to the states as every province is different in that regard. Manitoba would put you on a bus before you could pack.
Let me know what the response is in your area. This is a rare surgery to be sure.

I had this 11 hour surgery in 2024 for SCC in my upper jaw. I was in the hospital for almost two weeks, was cleared to swallow and discharged with an ng tube that was removed a few days later. Radiation followed. Significant weight loss and long recovery time for swelling and neck lymphedema to subside. Next phase will be replacing teeth. I am in Minneapolis/Saint Paul, Minnesota. Happy to share hospital and surgical team names. Friends in medical professions always tell me my surgical team did an amazing job. I researched Mayo Clinic in Rochester, MN and also Memorial Sloan Kettering in Boston prior choosing the team in the Twin Cities.
https://www.mskcc.org/cancer-care/patient-education/mandibulectomy-immediate-mandible-reconstruction-fibula-free-flap

Hank you very much for sharing your experience.I would appreciate if you share medical team names,and hospitals. I also wonder how long did it take to go back to work? Did you need someone to take care you after the hospital? When discharged, were you completely mobile and able to do light chores.
How long did you have to wait before having teeths?
Thanks again

My surgeons were Dr. Ketan Patel and Dr Jeffery Goldstein at North Memorial Hospital in Robbinsdale, Minnesota. https://northmemorial.com/surgery/oral-maxillofacial-surgery/

I wore a Velcro closure ‘boot’ 24 hours a day for six weeks post-surgery. I had someone drive me to two medical appts in the two weeks after I was discharged but then was able to drive an automatic car and drove myself to radiation appts.
I live alone and had family and friends willing to run errands, provide meals and help, however, all I was eating were soft foods—bone broth, soups, cream of wheat instant mashed potatoes IKEA’s frozen Swedish pancakes, scrambled eggs, and Premier Protein shakes and beverages. I had a visiting nurse come to change bandages on my leg and monitor the oral surgical site and was able to drive myself to and from daily radiation appts.

It felt like all I was doing was sleeping and going to the radiation appts.. for two plus months post-surgery. I live in a coop condo with neighbors who were eager to assist I could walk to a grocery store and pharmacy. I did not have to shovel snow and had underground parking but was able to maneuver winter while wearing the boot.
I am retired so didn’t need to worry about returning to work. Members of a support group I am in always comment that they do not know how they could have done it without their spouse providing care and encouraging them to eat, making sure they had enough calories. Etc. Somehow I managed.
I am still waiting for teeth— they recommend waiting 12 to 18 months for the bone graft to heal and also to make sure the cancer does not reoccur.

The comment by @anndri3 sounds frightening or likely worse case scenario.
First, Cam boot on leg typically is worn only whilst walking, only two or three weeks, never when sleeping. Perhaps a compression sock at other times.
This is also the first case of radiation treatment while trying to heal from the facial bone graft. @mavish as in your case, this surgery is normally performed long after the patient has suffered the ravaging of cancer treatment.
My prosthetic teeth were fitted about eight months post surgery. I return annually to ensure the blood flow to the bone continues and all is clear with this most complex and intricate surgical repair to the noggin.
I eat basically anything except hard foods such as hard candy. Tom Cruise still looks like me although he is not aging well ( notice I didn’t say that the other way around).
While initially this surgery is a bit grueling, the healing is far more rapid than cancer treatment. I was 100% for work within three months, walked with a bit of a limp perhaps one year, and got used to the different oral sensations in roughly two years.
The key here is to ensure your team is vastly experienced in this surgery. Good healing.

Do you know who is the most experienced in Canada?