Reaching out to anyone else wanting to connect with others diagnosed with Ameloblastoma and the journey involved.
My background, diagnosed February 2021, segmental mandibulectomy, fibula free flap March 2021.
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@anbar04 Just checking in on you! Hope things are going well
@hrhwilliam Thank you for the offer, I'd been waiting to respond until I had the detailed pathology report - which hopefully will be soon, the oral surgeon left me a message yesterday wanting to discuss the plan going forward.
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Hi Tom, any update?
Hi, Colleen! Thanks for checking in.
Pathology confirmed ameloblastoma for both tumors, was iffy on the subtyping but said probably unicystic. That wasn't definitive enough for my oral surgeon to go with conservative surgery.
Therefore, I've gotten a referral to MD Anderson to pursue targeted therapy and I'm working through their process. Nominal first appointment isn't til mid-September, unfortunately. Every step seems to take so darn long.
It feels pretty lonely having such a rare disorder - this is the only place I've been able to communicate with others who also had/have ameloblastoma. The loneliness is compounded by needing to take my own road for targeted treatment instead of the conventional approach of radical surgery.
Having Ameloblastoma comes with a multitude of complex emotions, and I know it can feel lonely but you are not alone and always remember you will not go through any situation in which you cannot handle. I wish you luck for the targeted therapy, remember to look after both your physical and mental health throughout this process and I know you’ll come out of this much better in all forms!
I just had my pre-operative assessment today and I’m going to have my surgery on Monday, they decided to a scapula free flap in which instead of taking the bone from the leg they’ll be taking it from the shoulder bone. I feel nervous yet excited but I know it’s all going to be worth it!
Best of luck with it @anbar04 !
Thank you for the support and quote! I have been doing lots of research which can be quite daunting at times. I think my main fear is the fact that will I ever be the same again after the surgery both physically and mentally? How long did it take for you to confidently say you have fully recovered?
Do you have speech and swallow problem after 2 years? Can you share the problem that you experienced one post operation?
I too recently had my left mandible replaced with fibula bone and free flap reconstruction up at Mayo. Yes, it was scary and not the most pleasant experience of life. However, two years out and I am doing fine. Please, if you have questions or concerns don't hesitate to ask me or anyone else in this group for information.
Believe it or not, my biggest concern was if I would ever be able to walk normal again after removal of the segment of leg bone. Turns out that was a non-issue.
Anyway, I am sorry you have to go through a battle like this at such a young age. As Winston Churchill would often say, "Courage". Later when your friends whine about a cell phone or pizza not having enough cheese, you can just smile at the triviality knowing what you have been through is a mountain most would not climb. Good luck.
I have some questions... After 2 years... Do you have speech and swallow problem? Could you please share your experienced , one year post operation, I mean the problems that you experienced...
I really want to know because my daughter age 14 will do the operation like yours
My 23 year old son was recently diagnosed with ameloblastoma in Orlando, FL. His lower jaw/mandible cyst was seen on annual dental xrays and he was referred to a local oral surgeon. The pathologist we met before surgery said it was most likely OKC vs a dentigenous cyst. He had surgery to remove the cyst in the surgeon's office with a local and IV sedation and went home afterwards. (He is well-healed now, back to work and school and will be on a soft diet for 3-4 months while the bone graft heals.) However, the pathology report came back with amelobalstoma. He has been referred to another local Orlando MD who is a head and neck surgeon for "monitoring" starting in 3-4 months after he is healed.
I am a former oncology nurse and everything I read mentions removing healthy tissue around the ameloblastoma in the hopes that all the tumor cells will be removed to lessen the chance of recurrence. Because the surgeon wasn't expecting this diagnosis, I believe he only removed the cyst and the lining (like a balloon) that surrounded it. We feel our son should be seen at a major medical center where the physicians have more experience with this type of tumor. We would at least like a 2nd opinion at such a center to tell us if he should actually have more tissue/bone removed asap, or if monitoring by a local head and neck surgeon in Orlando is appropriate. Besides the Mayo Clinic, are there other centers of excellence for ameloblastoma? Stanford appears to be doing research. Is there anything at MD Anderson, Cleveland Clinic? Anywhere else?
Thanks so much in advance. Annie
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