Fibula Free Flap, my favorite! Been there, done that. Your worries about standing, walking, exercising were exactly my thoughts as well four years ago. I was back on my feet within a few weeks and walking without difficulty. Standing on one leg is still nearly impossible. On the other hand, my engineering job at the time had me on my feet nine hours per day and walking roughly five miles per day. Like you I worried but found it was not much of an issue.
You likely will have some odd nerve sensations for a year or two in your leg and foot. You also end up with a really cool scar, about 100+ stitches which probably should have a zipper tab tattooed on one end just for laughs. The jaw and mouth will also have nerve issues for a while. For me, I have had issues with my prosthetic teeth rubbing on my ever growing gum tissue. No other issues.
Make sure, and I can't stress this enough, make sure the team that does the Fibula Free Flap surgery has many under their belt, not reading it from a text book. You must ask them and the number hopefully is greater than fifty. This is a relatively newer surgery where just four years ago was done only in a handful of clinics in the US and two in Europe. Mayo, Rochester has trained teams in this procedure from around the world. Perhaps you might consider having this done either at Mayo or a clinic they have worked closely with. It is your life and your body and we hope it lasts a long-long time.
When and where is this scheduled (if you wish to share)?

Hi, @meadowj !

One good thing about ameloblastoma is that it is almost always a SLOW growing cancer. Please take the time to figure out your options and find the right treatment for you.

If you don't mind sharing - is your ameloblastoma in the mandible (jawbone)? Mine is, and around 80% of mandibular ameloblastomas have the BRAF V600E mutation. One cell in my jaw got that mutation at some point, and grew into a tumor.

My ameloblastoma was first diagnosed in 2007, spotted on a dental X-ray, then referral to an oral surgeon. The surgeon wanted to do radical surgery like yours - because surgeons do surgery.

Instead, I opted for a conservative surgical approach (enucleation and curettage - basically "scrape out everything, but leave enough to maintain a jawbone"), with the understanding that it increased the chances of a recurrence. Not that the radical surgery had THAT much lower chance of recurrence (based on the scientific literature at the time). While being slow, Ameloblastoma tends to send out sneaky tendrils fairly deep into surrounding bone.

2023 - another dental X-ray found the recurrence in my jawbone. I was again referred to an oral surgeon who wanted to do surgery, because surgeons do surgery. Radical resection and fibular flap was the recommendation. Because I'm not comfortable with the rather significant chance of lifelong loss of capability (morbidity) from radical surgery, I looked for other options.

I (with a lot of support/help) researched the modern medical literature again and found that there is now an alternative. Targeted chemotherapy specifically targeting tumors with BRAF V600E mutation. The therapy was developed for other cancers with that mutation because ameloblastoma is so rare.

I had my PCP/GP give me a referral to MD Anderson, went through their process, was clear about my concerns over radical surgery, and was put on the targeted BRAF chemotherapy: 5 pills a day. There are now multiple ameloblastoma patients at MD Anderson using this treatment.

I'm definitely happy with my choice. The pain went away within days of starting the chemotherapy, and the tumor has been (very) slowly shrinking. It hasn't been a total picnic - I was super tired early on and had to go on thyroid hormone replacement (synthroid) - so I guess technically it's 6 pills a day.

Radical resection and fibular flap very likely means you would need significant physical therapy for eating, drinking, speaking and using your leg where they source the bone/muscle/etc. You may never regain nerve function on that side of the jaw area - I had a numb cheek, part of my lip, tongue, etc for months after my conservative surgery. It likely would have been permanent if I had agreed to the radical surgery.

I've since met (or "met") two people who had a rejection of their radical resection and fibular flap. One in person at MD Anderson, one online here. The one at MD Anderson was very hard to understand - her husband translated most of the time. @anbar04 - if you're still around, could you share your experiences with that surgery and the challenges afterward? You are also closer in age to @meadowj

I'm not here to tell anyone what to choose - I'm just sharing my experience and choices.

Personally, I would really like to see the "standard of care" as something more like treatment of more common, faster growing cancers: Conservative (jaw preservation) surgery to cut out the main tumor followed by targeted chemotherapy to kill off any scraps of tumor remaining.

Lots more information/discussion in the prior Ameloblastoma thread, if you have interest: https://connect.mayoclinic.org/discussion/ameloblastoma/