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.
Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.
I’m a touch behind you, my defect was Bit large so it’s been a journey trying to find a design that aids speech and chew. I think we are close though. I don’t have the hyperplasia tissue growth, do they anticipate that being a regular process for you or will it settle as time passes?
Jump to this post
The growth started after my temporary prosthetic was installed in October, and I began to notice it (with my tongue) in December before it was removed in January. My surgeon said, after removing new growth in March, that the hyperplastic tissue was less in March when compared to January. But he did indicate he'll probably have to remove it again May, and hopefully even less growth then. I did confirm with my local (DFW) dentist that she would be able to remove it to avoid another plane trip to Rochester. I hope the growth stops at some point. At its peak, the hyperplastic tissue does effect my speech (mush mouth).
I hope you get some improvement on speech and chewing.
My surgery was July 2022 and still have swelling and numbness in the face. Anybody else have these issues
I'm almost 2 years out and the numbness is still there, they say sometimes some people get some of the feeling back but I haven't. I didn't have a nerve graft so I'm not anticipating regaining any sensation. The swelling took me several months to go away, maybe 8-9 months in total to go away.
Was yours in the mandible or maxillary? Did it effect your eating as far a feel in the mouth?
Was yours in the mandible or maxillary? Did it effect your eating as far as feeling in your mouth
Mine was mandible, I lost 10 teeth. After a prosthetic was in, my issue was with tongue weakness and difficulty swallowing. With exercises to strengthen the tongue its pretty close to normal now. I eat slower than I used to but for the most part I can eat everything. I also needed lip support on my prosthesis so I wouldn't bite my lip with eating.
Hey guys, I am an 18 year old girl who was diagnosed with ameloblastoma in my right mandible in November 2021. I am currently heading to an appointment on Thursday for a final decision on if they will do the jaw reconstruction or if they will simply take the tumour out and put in a metal plate to see if it comes back. I am currently feeling very overwhelmed and scared and I just wanted to ask how any of you guys coped. I feel as though none of my family or friends can understand but i appreciate them trying. Thank you so much
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.
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?
Connect with thousands of patients and caregivers for support and answers.
Already have an account? Sign In