Diagnosed with Ameloblastoma

Hi @ssalava An additional note. I just returned from an Oral and Maxillofacial group visit for a check-up, which was fine now four years out. We discussed "a patient" having granulation tissue removed now four times. Everyone involved seem to agree that "a patient" has excessive tissue growth as part of the healing, is not considered in the center of the Bell Curve but more to one side whilst I myself am on the other side of the same curve. We are all different. We all have unique experiences and differing healing properties. Dr. Arce's group is doing the best they know how to make this patient comfortable and fully healed where repeated granulation or de-bulking will no longer be necessary.
I hope for you this is the last time and your future visits come out 100% good. We both have gone through something that would make most folks legs buckle at the mere thought of it. I think in the long run it makes us stronger than most, certainly unique, and especially brave, like Horatius, Captain of the Gate. He survived too!

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.