Diagnosed with Ameloblastoma

I went to Mayo for my appointments last week. I was very impressed first with the kindness of the people of Rochester, also the ease of navigating the city and Mayo itself. They operate like a well-oiled machine. And of course, impressed with Dr. Arce and his staff. My surgery will be in August. We are deciding now between the FFF or tissue and vein from my wrist with zygomatic implants. The recovery with the wrist tissue flap is quicker than the FFF; but I am unsure about Zygomatic implants grounded in my jaw. Guess I need to explore more.. I feel like that could also be painful in the future... If anyone in this community has had the wrist flap and/or zygomatic implants, please share how that experience was for you. Thanks.

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.

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?

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.

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.

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.

That’s very possible. I am not up on the Maxilla surgery. I will be meeting with the surgeons at the end of August. I will get better information as to this surgery for the future. Sorry. Just a Mandible patient.

Since mine is the Maxilla, no one has mentioned a 3D bone jig; etc.. So I would be going back you think before the surgery?

That is correct. It will take a while to plan the surgery, make the parts necessary for the surgery such as the 3D bone jig, the metal brace, and so forth. They also will want to fit this into your schedule as well. I wish it could be one and done but unfortunately surgery is not that far advanced yet. Getting close but not there yet.
By this time next year you should be doing great. In the meantime, explore Mayo and the connected tunnels in Rochester while you are between appointments. Take the elevators to the top floors and take in the views of MN.

I'm scheduled for a consultation in early July. He has all my CTs, MRI's etc. They asked me to have 2 more scans and bloodwork. Then the following day I have a consultation. Im assuming if it goes well, then I'll get a surgery date.