Diagnosed with Ameloblastoma

-We lived in Menlo Park and I worked as a nurse at Stanford for over 20 years, about 20 years ago. Still have lots of friends in the area.
-Does Stanford have a team that routinely performs ameloblastoma surgery/reconstruction? -My son (23 years old living in Orlando, FL), had oral surgeon remove a mandible jaw "cyst" in August 2023. They said no biopsy needed, they would just take out the whole thing. Pathology report came back with ameloblastoma. Now after 3 months healing he just saw head and neck surgeon (Fawaz Makki) in Orlando who operates at an Advent Health hospital nearby. The newest CT shows they didn't get it all. (No surprise there.)
-I've looked at Stanford but cannot tell if they perform the surgery with fibula FF often and if they have a team approach to the surgery/post-op recovery--nurses on the post-op floor familiar with care, PT familiar with the fibula surgery and know what kind of care/exercises are needed, etc. We live in Rochester, NY--so will most likely have to fly wherever we go for surgery. Mayo is definitely on our list of options but need to know more about Stanford before getting a 2nd opinion there. Who were your surgeons? Do you know how often they perform this surgery?
_Thank you in advance and continued success with your recovery.
Annie

@anniecl, you might reconsider Mayo Clinic in Florida. All Mayo Clinic locations use the same collaborative team approach. This includes collaboration with specialists from all locations.

You can read more here:
- What makes care at Mayo Clinic different? https://www.mayoclinic.org/patient-centered-care/what-makes-mayo-clinic-different
"Teams of specialists. Genuine collaboration. Focused on your health and safety.
Your Mayo Clinic team will be hand-picked according to your unique needs. It will likely include specialists within and across departments to evaluate your condition from fresh perspectives.

Plus, your team has access to more than 4,700 Mayo Clinic physicians and scientists on three campuses. If there's a question, alternate ideas and emerging research are just a phone call — or hallway — away. At Mayo Clinic, our approach leads to more answers and more happy endings for patients than anywhere else in the world."

If you'd like to inquire more, you can contact Mayo Clinic and ask specific questions http://mayocl.in/1mtmR63

Hi @anniecl Thought I would jump in for a brief moment.
It would certainly be worth asking about the experience of the surgeons specifically with Fibula Free Flap. This procedure was done up until only a few years ago by just a handful of hospitals and clinics worldwide. It is very specific, tricky, micro-surgery and is a day-long procedure involving several surgeons and technicians all working as a team. Complications can and often will result if the team is not well versed in this surgery.
I can only say from my surgery at Mayo, Rochester (MN, not NY) Dr's Ettinger and Arce who have helped develop these procedures now used world-wide have also the experience of well over a thousand cases specific of Fibula Free Flap Mandible Resection.
I for one have had excellent results, walking, talking, chewing gum all at the same time.

Thank you.
-I contacted Mayo in Jacksonville again and spoke with the head and neck surgery clinic and now have heard that they do care for people with ameloblastoma
Will be sending records there for review. Not sure who I spoke with the first time I called several months ago.
-Were you treated at Mayo Jacksonville? If so, what was your experience?
Thanks in advance.

-We lived in Menlo Park and I worked as a nurse at Stanford for over 20 years, about 20 years ago. Still have lots of friends in the area.
-Does Stanford have a team that routinely performs ameloblastoma surgery/reconstruction? -My son (23 years old living in Orlando, FL), had oral surgeon remove a mandible jaw "cyst" in August 2023. They said no biopsy needed, they would just take out the whole thing. Pathology report came back with ameloblastoma. Now after 3 months healing he just saw head and neck surgeon (Fawaz Makki) in Orlando who operates at an Advent Health hospital nearby. The newest CT shows they didn't get it all. (No surprise there.)
-I've looked at Stanford but cannot tell if they perform the surgery with fibula FF often and if they have a team approach to the surgery/post-op recovery--nurses on the post-op floor familiar with care, PT familiar with the fibula surgery and know what kind of care/exercises are needed, etc. We live in Rochester, NY--so will most likely have to fly wherever we go for surgery. Mayo is definitely on our list of options but need to know more about Stanford before getting a 2nd opinion there. Who were your surgeons? Do you know how often they perform this surgery?
_Thank you in advance and continued success with your recovery.
Annie

Checking in with my Ameloblastoma peeps - hope everyone is doing well! Feel free to post updates if you are up to it.

Happy Solstice!

Hey guys, I hope you’re all well and finding lots of peace and clarity within this period! My ameloblastoma journey has been really odd, I had the free flap from the bone in my shoulder blade and now four months down the line the bone has failed so today I got the bone all removed and now I have to wait for the site to fully heal and then go from there so it’s all over the place as of now but I’m happy and forever grateful I’m in this position and I have learnt a lot and definitely become a better person because of this up and down journey. How is everyone else doing?