Diagnosed with Ameloblastoma

Greetings!

I've also been recently diagnosed with an ameloblastoma of the right front mandible and am SO glad to have found y'all! Although my journey is just beginning, the information provided has been quite elightening. It really does help to know what the next steps could be. Thank you all for sharing!

My tumor was discovered initially in January of this year (2024) by a dental panoramic xray. Dentist referred me to a local oral surgeon who, after performing his own xrays and CT scans, came to the initial diagnosis of Keratocystic Odonotgenic Tumor. Conservative surgery was on 2/14/24. Pathologist returned a final diagnosis of ameloblastoma, follicular type.

I have read a good number of your posts and just had one question. For those of you who experienced recurring ameloblastoma, how long after the original surgery did that occur?

Hello! Welcome to our little club @mjarmbruster !

Original discovery of my ameloblastoma was in 2007, followed by conservative surgery. Recurrence discovered in 2023. Both times discovered on a dental X-ray, followed with a biopsy by an oral surgeon and a long wait time for a pathology report.

Ameloblastoma tends to be slow growing, and tends to recur - which is why more radical surgery is typically chosen. That said, I have no regrets.

-My 24 year old son had a similar experience. His dentist saw something on a routine xray so took a CT and referred my son to an oral surgeon. We were told it was most likely a typical dental cyst and they did surgery to remove it. They didn't feel the need to do a biopsy because they were so certain it was a simple cyst. We later learned this was probably the conservative "scoop" surgery. The pathology report identified ameloblastoma. The oral surgeon referred my son to a local head and neck surgeon (who does surgery in a community hospital), for follow up 3 months later. Before this appointment they checked another CT for comparison and not surprisingly saw 2 spots of the amelo, so the FFP surgery was recommended to be done in a few months or up to a year later because amelo is so slow growing.

-My son has decided he would like to proceed with FFP surgery as it seems the conservative scoop surgery rarely seems to remove all the amelo cells and recurrence occurs down the road at some point. I'm a nurse and knew we would need to have this done at a major medical center where there was a team approach and the surgeons had done many of these procedures. That's how I found Mayo Rochester and we are in the process of getting a consultation appointment there.

-To answer your question, I don't think my son's amelo recurred after the initial conservative surgery to remove what was thought to be a cyst--I think the amelo wasn't all removed at his first surgery. Perhaps if the oral surgeon had known it was amelo he would have done a more extensive, conservative scraping. Then it would be all clear at this point and my son would just be monitored frequently so any re-growth would be detected early, and we'd proceed with the FFP at that future time.

-The new wrinkle in our plan came last week when my son saw a prosthodontist who works with the local head and neck surgeon. She evaluated him for implants to be done during the FFP surgery--if he chose to have the surgery done by the local surgeon. However, she thinks the amelo is so small at this point that my son should "wait until it gets larger." She mentioned research that the FFP transplant commonly fails if there isn't a large enough piece of fibula bone that is placed in the jaw where the amelo is removed. So now we are in the process of contacting the local surgeon to clarify this. I haven't seen that issue mentioned anywhere and am dubious. This seems like another reason one should have the FFP surgery done at a major medical center by very experienced surgeons who've done a lot of these surgeries.

-Best of luck to you. This is a great site for accurate information!

-My 24 year old son had a similar experience. His dentist saw something on a routine xray so took a CT and referred my son to an oral surgeon. We were told it was most likely a typical dental cyst and they did surgery to remove it. They didn't feel the need to do a biopsy because they were so certain it was a simple cyst. We later learned this was probably the conservative "scoop" surgery. The pathology report identified ameloblastoma. The oral surgeon referred my son to a local head and neck surgeon (who does surgery in a community hospital), for follow up 3 months later. Before this appointment they checked another CT for comparison and not surprisingly saw 2 spots of the amelo, so the FFP surgery was recommended to be done in a few months or up to a year later because amelo is so slow growing.

-My son has decided he would like to proceed with FFP surgery as it seems the conservative scoop surgery rarely seems to remove all the amelo cells and recurrence occurs down the road at some point. I'm a nurse and knew we would need to have this done at a major medical center where there was a team approach and the surgeons had done many of these procedures. That's how I found Mayo Rochester and we are in the process of getting a consultation appointment there.

-To answer your question, I don't think my son's amelo recurred after the initial conservative surgery to remove what was thought to be a cyst--I think the amelo wasn't all removed at his first surgery. Perhaps if the oral surgeon had known it was amelo he would have done a more extensive, conservative scraping. Then it would be all clear at this point and my son would just be monitored frequently so any re-growth would be detected early, and we'd proceed with the FFP at that future time.

-The new wrinkle in our plan came last week when my son saw a prosthodontist who works with the local head and neck surgeon. She evaluated him for implants to be done during the FFP surgery--if he chose to have the surgery done by the local surgeon. However, she thinks the amelo is so small at this point that my son should "wait until it gets larger." She mentioned research that the FFP transplant commonly fails if there isn't a large enough piece of fibula bone that is placed in the jaw where the amelo is removed. So now we are in the process of contacting the local surgeon to clarify this. I haven't seen that issue mentioned anywhere and am dubious. This seems like another reason one should have the FFP surgery done at a major medical center by very experienced surgeons who've done a lot of these surgeries.

-Best of luck to you. This is a great site for accurate information!