Diagnosed with Ameloblastoma

@anbar04 Thank you or your kind words and any prayers you can send my son's way. The anxiety has been awful. Like a constant lump in my throat. I'm hoping with our appointment next week, we can at least have some tests done. We were referred from our dentist to an oral surgeon, which is where we were given the prognosis. That oral surgeon has referred us to another oral surgeon who is associated with a hospital that can operate on a child his age. So I'm not sure if this appointment will be another consultation or if they will have tests scheduled as well.

I am thankful to have found this forum. There is so much helpful information, and very supportive members!

@lesleylbrown I’m sorry to hear that we’ll all be praying for and wishing the best for your son. It’s always nerve-racking to be diagnosed with something so rare and I can only imagine how it must feel as mother. The best thing you can do to relieve the anxiety is to keep supporting your son throughout this process but also take time for yourself to come to terms with everything and feel well informed with how the process may be for him. Just know that as long as he’s in good hands he’ll be ok and that this journey reflects your sons and also your own strength and can build character in ways you’d never think. In the meantime research is good and you can always ask us if you have any questions and know that with hardship comes ease💕🥰

Hi everyone. I had read through many of your stories and found them very informative. I mainly came to this page because my 10 year old son received a prognosis of ameloblastoma. We just found out two days ago and I am completely stressed out. Our oral surgeon referred us to a different oral surgeon who is associated with a hospital that can operate on children. Our appointment is next week and I'm just anxiously reading information until then.

Had someone else with a mandibular ameloblastoma reach out to me for more information on another forum some weeks ago. Obviously I shared my experience. They decided to pursue the targeted chemotherapy at MD Anderson and have an initial appointment later this month. MDA is already getting the biopsy sample for genetic testing to confirm whether it's BRAF V600E.

So it looks likely that by the end of the month there will be three of us with the same treatment plan at MDA. I hope it works out well for all of us.

Tom, I wish you the best. I hope all goes well next scan. Your input to this group is so valuable, your journey so unique.

Hey, just checking on my Ameloblastoma peeps!

Still continuing on here, next CT is mid-September. Nothing really new to report on the targeted chemo.

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.