Diagnosed with Ameloblastoma

My dad ( born 1907) was a commander in the US Navy. His family was dirt poor, so it must’ve been in officers training that he learned his table manners—which were excellent. I grew up watching him eat everything with a knife and fork—fried chicken, even pizza! (Which I sometimes do as well.) So if others look puzzled seeing you using eating utensils while they use their hands, just assume the poor things never learned proper etiquette. 🤣

Thanks for the info. As far as mouth opening goes, with lots of practice I can now consume a large sandwich or hamburger using a knife and fork and eating European style, fork reversed in left hand and knife in right without switching out like we do in the states. As always, everything is cut into small bites. I get looks in restaurants especially eating chicken or ribs with utensils but I don't really care, it works. Good luck with finding what works as time goes by.

I thought having granulation surgery twice was a bit over the top but now I see you have had it four times, yikes! For me the biggest pain with that surgery is they classify it as Dental, which means my insurance doesn't cover it and it isn't cheap. I am going to see Dr. Arce in a couple of weeks and I think I will broach that subject with him.
It seems the new tissue continues to grow over time and once it rubs on the prosthetic, it becomes inflamed. Then a reduction is called for which is known as granulation tissue removal. Personally if dental would get rid of that silly simulated gum skirt below the simulated teeth, I believe that would end the granulation surgery necessity.
I had a situation earlier this year however instead of granulation surgery I convinced Dr. Ettinger's group to give me antibiotics. It worked 100% and have not had an issue since. But thanks @ssalava for the update and info. The better informed we are as patients, the better we can deal with our rather unique circumstances.

After seeing Dr. Arce for my annual visit first thing this morning, they worked me in today to remove the granulation tissue for the 4th time (by Dr. Wu). But it has been two years since the last time it was removed (Dr. Van Ess) and I suspect I will be having this done every year or two. Everything is good with my permanent prosthetic.

It is Facebook so there's that...but it is a private group not to dissimilar to this community. Unlike this Mayo group, the vast majority of the members of the private Facebook group are not receiving the level of care that we get with Mayo.

How are you doing with your hyperplastic tissue growth and permanent prosthetics? Is the FB group secured? It still exposes our identity there.

for those that are on Facebook, there is a private Ameloblastoma group:
https://www.facebook.com/groups/154326351301307/
although I sometimes feel bad reading about others with Ameloblastoma tumors who don't have access to the excellent Mayo care.

Just wanted to update the group that they did CT scan in Feb 2024 and they found that the plate dropped a little bit into my mouth, only option was to remove the plate through surgery. I completed radiation in Sep 2023, they had to wait 6 months after radiation. Did MRI in Apr 2024, no tumor growth. Finally got the plate removed in May, the bone is healthy and fused, so no biopsy done during surgery. It's been 6 weeks since I got the plate removed and next MRI scheduled for Oct 2024 to monitor the tumor. Working on mouth opening exercises, still around 15mm opening.

An uncontrolled growth of cells has always been my definition of cancer as well Tom. And there are some skin cancers that do not metastasize yet they are cancers. It seems only the common or “popular” growths get the proper recognition in the medical journals. Thanks for your input Tom. I wish it was within my royal powers to grant you an honorary medical degree as I most certainly would. Until then I and all very much appreciate your input.

I will comment on the "is it cancer" thing. The below is my opinion, based on the information I have found in the medical literature.

An ameloblastoma is incredibly rare. Having one metastasize is somewhat rare (low single-digit percentage) - but it is documented in the medical literature. That said, even medical professionals who know what an ameloblastoma is... almost certainly have no idea this happens. I only found it in the literature last year, not back in my 2007/2008 literature searches.

It's taken a long time for me to get around to the point of view that ameloblastoma actually is cancer.

Ameloblastoma is an uncontrolled growth of cells (tumor) which destroys the tissues around it and sometimes will metastasize. It meets all the requirements of cancer. It's just that the wider medical community hasn't caught up yet.

Not uncommon in science. We get new information and need to update our understanding of the world.

Anybody have a contact for who officially defines "is this cancer?" so that I can have a chat with them? Won't be the first time I've disputed world-class experts, usually successfully - even outside my area of expertise.

Hi @charlesvalley . I will add my welcome. You have excellent advice here from @anbar04 and @tomschwerdt as to the specifics of ameloblastoma. From my perspective, I have had the surgery that they have experienced yet for reasons other than ameloblastoma.
It is rare, very rare. It is also not considered cancer as it does not metastasize to other parts of the body. And as far as I know it is specific to the bones around the teeth only. GP’s I have talked with about this usually have never heard of it and had to look it up after I spelled it out for them, so don’t be surprised if you are met with the same lack of understanding.
Anyway good luck with this. We are here for you. And as I often said to anbar, “Courage”.