Diagnosed /w Ameloblastoma. Young Adult

I was 28 when diagnosed. When removing the ameloblastoma they had to remove 2 molars as well. I only chew on the non-surgery side. I do get some jaw pain here and there.
Are there any other people here that have had ameloblastoma removed with free-flap surgery and reconstructed with their fibula….what kind of follow up testing do you have done since your surgery? CT scan? MRI? Both? With or without contrast? Or both? This would be very helpful for me to know.

Hello,
I had ameloblastoma with fibula-free flap. Recovery took over a year and standing causes some circulation issues. Over time it improved. I don’t do any exercise with any sort of impact and I do wear a compression sock if I have only feet for an extended period of time.

Thank you so much to everyone steadily replying to me. I joined this Monday, so this website is quite new to me. But I am feeling better about the current status of what's happening. There was some conversation about a 'fibula-free flap' if it comes to that, will this effect me for exercising or even jobs that need me to stand constantly? And since its the jaw, could I still work at the job I work at now? It's very talk-oriented. Talking with my surgeon will help, but any answers or advice is extremely appreciated. Bless you all.

Hi. Does Mayo treat children for Ameloblastoma? My 8 y/o old son likely has ameloblastoma (pending biopsy results). There is almost no research on children only case reviews. All major hospitals in So.California say nothing about it on websites. I likewise work at inpatient pediatric hospital and want a collaborative approach to manage this super rare condition. I'd prefer conservative approach for now considering skeletal immaturity. Where do I start?!

Hi. Does Mayo treat children for Ameloblastoma? My 8 y/o old son likely has ameloblastoma (pending biopsy results). There is almost no research on children only case reviews. All major hospitals in So.California say nothing about it on websites. I likewise work at inpatient pediatric hospital and want a collaborative approach to manage this super rare condition. I'd prefer conservative approach for now considering skeletal immaturity. Where do I start?!

Hi. Does Mayo treat children for Ameloblastoma? My 8 y/o old son likely has ameloblastoma (pending biopsy results). There is almost no research on children only case reviews. All major hospitals in So.California say nothing about it on websites. I likewise work at inpatient pediatric hospital and want a collaborative approach to manage this super rare condition. I'd prefer conservative approach for now considering skeletal immaturity. Where do I start?!

Hi Meadow. I’m mom of a 25 year old guy who was diagnosed with ameloblastoma almost 2 years ago. His dentist saw something on a routine X-ray so took a CT and referred my son to an oral surgeon who was confident this was a “routine cyst” and they would just scoop it out. They were quite surprised when the pathology report showed amelo. My son was referred to a local head and neck surgeon in Orlando, FL where he lives. The H&N surgeon suggested surgery with a FFF within 6 months. I’m a nurse with about 40 years of experience in university medical centers in California and Iowa both inpatient and the clinics side of the “house.” I’ve been a bedside nurse and a unit manager. So I knew that a VERY experienced surgeon and surgical team, ICU nursing staff, floor nursing staff, physical therapist, etc. would be critical—where EVERYONE had cared for patients with this rare disease undergoing this type of extensive surgical procedure. I found Mayo-connect and an amelo Facebook group and asked many people where they had or were having their surgery. I called our insurance company (the 1-800 number on the back of your card), and asked about coverage for 2nd and 3rd opinions and for surgery done outside of our home state I called many medical centers around the country and looked at their websites to see if they had experience with this disease and procedure. I questioned my local dentist, my son’s childhood dentist and the oral surgeon who removed his wisdom teeth several years before. They offered names of hospitals and surgeons, but when I investigated I found none really had the necessary experience I was looking for. Many admitted they had heard of amelo but had never had a patient with it. We went to Mayo and saw Dr Arce (a name well-known in the field) and to Stanford, mostly b/c my nurse friends in the area could help my son (and I), with his recovery. We were very impressed with the Mayo experience and a “watch and wait” approach that was suggested. Their entire team has done hundreds of these surgeries. The surgical time is minimized by having one team working on the jaw, while the other team is working on the leg. They can place implant posts during the surgery which makes placing artificial teeth after healing much easier. And also less costly to the patient. If posts are placed months after the initial surgery they fall under dental insurance and are considered cosmetic—so reimbursement is much less— meaning you will pay for most of it. The Stanford surgeon had much less experience and the care seemed fragmented with someone in local private practice who would do the dental replacement surgeries several months later. He wanted to operate right away.
We decided to continue with Mayo where my son is having every 6 month video visits with Dr Arce where they review CTs from his local Orlando dentist.
This is a very supportive and knowledgeable group. Don’t hesitate to ask us any questions you have. Or to ask what you should be asking or considering.
Best of luck to you. We’re here to help.

@meadowj

I've been thinking more about what you said.

When I originally had my tumor removed, the process inflamed or damaged the main nerve on that side of the jaw, so about a quarter of my face and part of the inside of my mouth (including part of my tongue) was numb for several months after the actual incision had healed over with gum tissue. As feeling came back, I had burning and itching around the edges of the numb area for several more months while the numb area shrank.

I still remember the stubborn final spot was on my chin - pretty far from the actual tumor removal. I'm wondering if you are experiencing something similar - part of your body repairing itself. It would be unprecedented for an ameloblastoma to meaningfully grow back in this short of a timeframe.

As an aside: Shaving a partially numb face is WEIRD! I hadn't realized how much I depended on sensation of the razor on my face to microadjust pressure.

For the imaging - I was referring to whatever Xrays or other imaging you already had done. You can often get online access to them.