Diagnosed with Ameloblastoma

This is all so much.. I am 65 as well. Tracheostomy? That's another layer. I better look that up! I live in NY so to have this surgery in Minnesota, I have to consider how I'll stay there for a few weeks to be local. I'm sure I can figure that out. You do remind me, though, that you are on the other side and now you can look back on it. I look forward to that.

My ameloblastoma is mandibular instead of maxillary, but conservative surgery bought me 15+ years of full functionality with my original jawbone.

Ameloblastomas usually grow very slowly - and 15+ years later when it came back I have (and chose) the option of genetically targeted chemotherapy: 5 pills a day. Chemo is very slowly shrinking my ameloblastoma. I'm much more comfortable with the chemo side effects than radical surgery.

Everyone has to make their own choice.

Important note: Mandibular ameloblastomas (including mine) mostly have the BRAF V600E mutation. Maxillary ameloblastomas generally have different mutations. When I did my deep dive into the literature, I focused on mandibular because that's what I have. LMK if you want help looking into the mutations behind maxillary ameloblastomas.

The feeding tube is a bit annoying I agree, but nothing you can't handle. I wrapped the outside piece over my ear when showering or not in use. Plan for one hour meals and you will take ground up meds through the tube as well. I was 65 when I had this done. Piece of cake. Well, perhaps an entire cake.
For me I didn't like the CAM boot as it was clumsy and often banging into things.
You will have a tracheostomy which should be healing when you leave the hospital and you have to be careful taking a shower as to not get soap in there.
Dr.'s Arce and Ettinger were my team as well. You will never meet nicer surgeons.
My wife has reminded me she had to peal me off the ceiling a couple of times whilst dealing with the feeding tube. Likely so. But I had mine for three weeks and we live five hours from Mayo Clinic so lots of driving.

They, at Mayo, are the best. From the surgeons to the surgical floor and nurses. There is a place right across the street from the hospital we stayed in and was very convenient for my wife. I’m in Colorado and fly back once a year for follow up.

@hrhwilliam I can see what a great support you are to everyone on this forum, so thank you for your response. May lean into this group as I get closer to treatment. It's a lot, as you know! Part of a club we never asked to be in... I plan to reach out to Mayo Clinic, Dr. Arce. I only worry about the distance to get to my care team if there's any complications later, since I'm in NY. PS I am terrified of this feeding tube. To me that's the most frightening part now. Maybe because that was only just mentioned on my last visit.

@therock. thank you for your response. I am reaching out to Dr. Arce and the Mayo team for a consultation. Assuming that Mayo can recommend a place for you to stay. I'd be coming from NY. I worry about needing to get back to Minnesota in terms of distance and time if I needed them. But aside from that, willing to travel to get the best care. I do worry that "surgeons do surgery" and will they take a conservative approach if possible? On the other hand, who wants to do a surgery a second time, so maybe the radical surgery is better now.... I'm 65 but active and in great health, still working and travel quite a bit for my job. Hard to know what to do.

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.

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 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.

Hello, again! I'm just wrapping up a week at MD Anderson and thought I'd pass along my notes from the visits in case they'd help anyone else.

We met first with Dr. Myers, the surgical oncologist, who read the CT results from a scan taken two weeks ago back home in Nashville. He saw more than just bone regrowth, indicating that it's likely the amelo is still present and requesting his own CT. We had that CT the next day and then met with Dr. Akhave. I see why @tomschwerdt chose to go with him for treatment! Dr. Akhave was willing, assuming the markers for V600E come back positive, to use targeted therapy to shrink the tumor prior to surgery. Dr. Myers let us know that the surgery he recommends would be the same (radical) with or without tumor shrinkage. With that in mind, it seems that all roads lead to surgery. That's a bummer, but not entirely unexpected. I've got a surgery date here at MDA, but in the meantime, I'm going to see if I can find a provider back in Nashville that I trust as much as I trust MDA to do the radical surgery. It would certainly be easier and cheaper to do close to home.

My thoughts are with everyone in this forum. I hope that you all find the path that works for you!