Diagnosed /w Ameloblastoma. Young Adult

@meadowj

Hey, feel free to stick around, ask questions, talk about options you've discussed with your healthcare providers (or whether you want to find a different one), etc. It's hard to find folks who are also dealing with ameloblastoma - even the National Organization for Rare Diseases (NORD) doesn't have much.

Keep in mind that this is usually a VERY slow growing cancer and it rarely metastasizes. You have some time to figure out a course of action - don't get rushed into surgery. Doctors are used to dealing with fast-growing cancers, so they often want to schedule surgery quickly.

Of course, staying calm and considered is easier said than done. I know that when I knew my ameloblastoma was back - I was darn anxious to get treatment going.

Realistically speaking - getting my ameloblastoma tumor scraped out (while keeping my jaw) bought me ~15 years before I had to deal with it again. It was big enough that I lost 2 teeth, almost 3. I'm not saying to ignore yours for that long, just trying to help you from feeling rushed. Taking 6 months, 1 year, 2 years before treatment - it's unlikely to be a problem. Though I would be sure to get an appropriate X-ray at least once a year.

Thank you again to everyone being responsive and checking in with me. I have received news that for my CT-Scan alone, with insurance included the payment of it would be immensely high. To provide an estimate, $1300-1400. I work a job, however, the pay I receive is overwhelmed by the costs of this treatment already. Is this a normal co-pay usually? If not, I will have to figure out what to do. Since my previous conversations, I feel slight pain on the lower left jaw-section. I am unsure if this is is a placebo effect, or if within this period of time it has escalated. I will respond back here again, any and all types of responses are welcome as usual and greatly appreciated. This affects my academic career as well so there is a lot for me to take in.

If there isn't much information for the financial side, I do not mind more advice in general. Bless you all.

Medical costs can vary hugely between providers. I'm not even sure why a CT would be required if you were doing the full resection and fibular flap.

I also would not be in a rush (and yes - I know very well how hard that is).

How long ago was the "cyst" removal which turned out to be ameloblastoma? Do you know the approximate size?

Have you read the other ameloblastoma thread? @erikm was in a similar situation - tumor removed, later identified as ameloblastoma - what to do now? Starts on Page 22 https://connect.mayoclinic.org/discussion/ameloblastoma/?pg=22

Having a new location show up definitely raises the concern level. Have you had a good look at all of your imaging?

@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.

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.

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?!