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Diagnosed with Ameloblastoma

Head & Neck Cancer | Last Active: 5 minutes ago | Replies (258)

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@la93

Hi everyone, new to this forum with a recent diagnosis of ameloblastoma in the right maxilla. I have seen two doctors: one an Orthognathic Surgeon who told me he could remove the tumor in a 2 1/2 hour surgery with a flap using skin from my mouth. The second surgeon is an ENT who specializes in tumors (although has never operated on an ameloblastoma in the maxilla) He will first try a conservative surgery. However, suggests that pending actually being in the surgery and seeing how far the tumor extends (given the edges indicated in scans and biopsy), he may need to do the more radical surgery with fibular flap, arteries from my neck; etc. which will take approx 10 hours. My next step in that process is to meet with a reconstructive vascular surgeon. The thought of this fibular flap---and of being in Icu for a week on a feeding tube--is terrifying. How can two doctors approach so differently? I am in NY. This has led me to believe I need a 2nd or 3rd opinion.. In any case, I can see this is a very supportive group, and am wondering if anyone has used a doctor in NYC for a ameloblastoma maxillary surgery. Thank you all. Just reading your messages between the group is very comforting.

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Replies to "Hi everyone, new to this forum with a recent diagnosis of ameloblastoma in the right maxilla...."

I had ameloblastoma in the left maxilla 3 years ago. I went to Mayo Clinic in Rochester and had Drs. Arce and Ettinger perform the surgery. It was 10.5 hours, 1 week in the hospital with feeding tube and 1 week in an apartment with feeding tube. After 2 weeks feeding tube was removed and I was allowed to go home with a CAM boot on my left leg where they harvested the fibula free flap. After 3 years of follow up all is clear and have 2 more years to go. I would highly recommend Mayo Clinic.

Hi @la93 Because an Ameloblastoma is very rare, you should definitely enquirer as to the surgeon’s experience with this. This applies to the surgeon who has recommended the fibula free flap as well. The latter operation requires an experienced team to perform yet the timeline given sounds about right. That surgery, horrible as it might sound, often has great results, mine included.
In a nutshell, consult to find experience. This is your life, not the local doctor’s.
Personally I would recommend Mayo as well. However Mayo has trained many surgeons around the world in this procedure so perhaps your local team may be well versed.