Diagnosed with Ameloblastoma

Hi @anbar04 So good to hear from you. Doing well I expect? Has recovery been complete? I am hoping you have a nice smile once again to go with your courage. Cheers.

Hi @sueputnam I think we should soon require a medical definition of “dental”. I have experienced Medicare rejection of gum tissue ablation as dental, no teeth in that area, only prosthetic. In your case however, an advantage plan is really only an advantage to the insurance company or to those who never get sick. My costs have usually been under $2000 USD under standard Medicare without appeal.

Hey, thank you so much for sharing your story and insights I do appreciate it so much!! I’ve currently had the jaw reconstruction and a few other surgeries, recently they took my hip bone out and put it in my jaw as my previous surgeries had failed. I can also confirm insurance always tries to be sneaky😭

I had a 1”x 3” section of lower right mandible removed in 2021 along with a 1”x3” benign unicycistic ameloblastoma cyst, and 3 teeth. The replacement is a 5 tooth permanent bridge with a small space below it for cleaning and future access. My biggest problem was with payment. By the time you get to “benign.” your only thought is to get it out as soon as possible! I had Medicare Advantage PPO Dental Insurance and a Physicians Mutual dental insurance policy. The approximate cost was $10,000 to take it out and $10,000 to fill the hole. Problem was that UHC said it was a dental issue as did PM. It took nearly 4 years of fighting with the insurance companies to prove to them that their own rules define unicycistic ameloblastoma as a medical condition. Of course, if you want definitive answers and course of treatment, payment is due upon receipt of treatment. In the end, UHC came through with $2000 by way of their appeal process.

Hi @la93 Just returned from Mayo and whilst there I was thinking you were likely in recovery over at St. Mary's Hospital. I met with Dr. Ettinger from the Oral and Maxillofacial Surgery group. We had a chance to discuss current cases which is why you came to mind, although we never discuss specific patients per se. I hope all went well and you are now in the struggle to full recovery. It certainly isn't a simple procedure or quick to bounce back but I hope you will do just fine.
I of course was there for an annual follow-up being now coming up on five years out from surgery. I have a specific issue not uncommon with using leg tissue in that I get a section which continues to grow and requires a quick snip to remove along side my prosthesis. Aside from that, scans show complete recovery with no known issues or (in my case) cancer reoccurrence.
I wish you well.

Hey, sorry to hear of your difficulties. We've discussed the genetic testing across a few different Ameloblastoma threads.

Thank you for this @tomschwerdt. Doctors Arce/Ettinger removed a maxillary ameloblastoma in my right sinus cavity, via FFF, in July 2021. While I have no proof/evidence, I believe the ameloblastoma tumor was triggered by the extraction of Tooth #3 (6 year molar) in January 2015. The tumor was first discovered during a pituitary gland MRI and subsequently removed (the first time) by my ENT in June 2020.

Now separately, I am facing root resorption in Tooth #30 (also 6 year molar), directly below my Tooth #3. My dentist and endodontist have recommended extraction as the only option once #30 becomes problematic. Right now, I am not in pain and only aware of the resorption when I brush my teeth back there (no pain, just a slight "ting"?). I usually eat on the left side of my mouth because of the prosthetic appliance (Dr. Muller in Mayo's Dental Specialties) so #30 is not a problem...yet.

Given my prior Ameloblastoma tumor, I have inquired about genetic testing as referenced here: https://www.mayocliniclabs.com/test-catalog/overview/608305 and here:
https://news.mayocliniclabs.com/2018/08/21/neuroonc-cases/ when I am in Rochester in a couple of weeks from now.

Has anyone else pursued genetic testing related to ameloblastoma propensities?

I had the FFF with implants done at the time of surgery. I’m not familiar with using skin from my arm. I was also lucky enough to have enough skin in the mouth without having to do a graf.

reading back on your posts @kkd and @the rock, since my Maxilla Amelo surgery is upcoming end of August... I'm considering Zygomatic implants which means they believe they can do a flap using skin from my arm rather than the FFF and leg bone transplant... Dont know if this is a rather new choice, as I've only seen one other person in another Amelo group who had the arm tissue transplant.

As I recall, I was able to walk normally within a few weeks of the FFF surgery with no complications (other than painful nerve re-awakenings managed with Lyrica). I've been walking 3-4 miles in the mornings, 3-4x per week at about 4 mph clip starting about a year after the surgery.

Since this post from 3+ years ago, I still travel up to Rochester for annual visits with Dr. Arce and Dr. Mueller and every visit has required the removal of hyperplastic granulation tissue between my right cheek and the permanent prosthetic (received 10 months after the surgery). My local dentist monitors and confirms the growth is happening.

Because I went a few months with nothing in my upper right jaw, and then several more months with temporary prosthetic appliances, I usually chew on only the left side of my mouth and have to consciously push food to the right side if I want to chew using the prosthetic.

I hope that helps!