Diagnosed with Ameloblastoma
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.
oh you may be right even for Maxilla! Honestly every visit Ive had in NY seems like there's another layer ... sigh. I keep thinking about how you wrote, "what have I done?" when you woke up. As much as I mentally prepare, don't think I know what I'm really in for...I also thought about that dry erase board. I'm going to create a list of "must haves" before I go to surgery, like that simple dry erase board. Genius.
St. Mary's staff actually supplied the dry erase board. They let you know what you will need and it isn't much. Having a friend or loved one to help you out is probably the main thing which will help with recovery and dealing with meds and a feeding tube for the short time necessary. There are a couple of hotels across the street from St. Mary's with very reasonable rates for family of patients, and a very short walk. Else, there is likely shuttle service from most area hotels as well. The city is amazingly geared toward the clinic and helping patients and their families such as dealing with last minute schedule changes.
Hi @caw, I had mandiblectomy of rt jaw in Nov, 2023 with fib flap surgery. In remission, thk God. Lost 6 teeth in process.
Got fitted for partial denture. Before that, I drank smoothies. I am having hard time getting used to denture. Still not eating with it yet. All in good time. The fib flap surgery on leg is still giving me problems with walking. PT didn't help. This has gone on way to long. Any suggestions would be greatly appreciated.
Hey there, I didn’t have much trouble with my FFF leg, I wore compression socks during the day for the first year then after that I’d wear them when I worked, and I still do. That helped a ton with the aching. Are you wearing compression socks?
It took about two years for the leg issues to subside. Phantom pains were the worse. Compression socks helped a lot. I also had to concentrate on my walking pace, which still isn’t the best. I have a little hitch in my get-a-long but it doesn’t slow me down.
I understand the hesitation to eat on the prosthetic side. It’s likely 50% fear and 50% physical. Hard chewing on that side might produce pain. I think that is due to a lot of factors such as the new bone being physically smaller than the original and likely not as stiff. Just my theory. I’m coming up on five years out this fall, four with the prosthetic teeth and am still not comfortable chewing hard foods on that side.
All in all it beats the alternative and I am generally pleased with the results overall.