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-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
Replies to "-We lived in Menlo Park and I worked as a nurse at Stanford for over 20..."
Annie, sorry for the late response. Dr. Divi did my fibula free flap reconstruction. From what I heard by his fellow doctors was that they do these every week. They have full team of Swallow pathologists, Dieticians, nurses who are trained to support the patient recovery. Not just Ameloblastoma, they treat anything related to head & neck tumors. Their web site is very bad, doesn't list doctors experience or qualifications very well like other web sites I have seen, a lot of stale information. Hope they take time to update their website. They are too busy for that.
It took Oral surgeon & Dr. Divi almost 10 hours to remove the tumor and do the reconstruction. I love the speedy responses that Dr. Divi team provides. They also perform their tasks with the same speed behind the scenes. I live only 12 miles from Stanford, so I chose them. UCSF Dr. El-Sayed is good too. UCSF doesn't need any referral, but Stanford does need a referral to Head & Neck Oncology department. I got referred by Stanford Oral surgeon. I wish I had gone to HNO department to begin with.
If you like Mayo in FL and it is close to your son, you may want to prefer that per Colleen and other referrals. If Mayo FL has experience in treating these just like Stanford & UCSF, or even better than those 2, then you are in the right place.
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Hey, Annie!
Yes, since it's ameloblastoma - basic removal as if it were a cyst isn't going to do the job.
One thing that may make you feel better - ameloblastomas tend to grow quite slowly, so you can take a bit of time to find the right surgery team then make travel and recovery arrangements.
As an aside, since it's mandibular - there's about an 80% chance the ameloblastoma has the BRAF V600E mutation.