Diagnosed with Ameloblastoma

Hi Tom, good luck with your targeted treatment.

Here is my story:
I was recently diagnosed with Ameloblastoma in my Maxilla bone, it took one year for the diagnosis after visiting several doctors (dentist, endodontist, internal medicine, oral/maxilla facial pain, orthodontist). By then, the tumor became large per CT scan done by ENT specialist at PAMF in Mountain View, CA.

The biopsy sample was tested by 2 different institutions to confirm it was Ameloblastoma benign tumor. The PAMF doctor who did my biopsy referred me to Stanford Oral/Maxillofacial Department in Feb 2023. It took them 3 months to give me a surgery date because it involved 2 surgeons from 2 different departments (1 surgeon from Oral/Maxillofacial Department for tumor dissection and 1 from head/neck oncology department for reconstruction).

After the complex surgery for 10 hours, they did an emergency redo within 24 hours on flap because it was missing blood flow, I was able to recover with ups and downs for the flap to survive. Stanford pathology came back after 4 weeks saying it was Ameloblastic Carcinoma with no BRAF mutation. So Stanford medical oncologist mentioned that I had to go through surgery/radiation treatment and no chemo/medical treatment. I went through surgery by then, so radiation was the next step. But my Head/Neck Oncologist performed another CT & MRI and found out that another tumor split from main tumor and started eating bone in the skull base. So they had to perform another surgery before going radiation.

I finally went for second surgery with neurosurgeon to remove that newly discovered tumor and the same Head & Neck Oncologist to remove extra margins from the first surgery location. Radiation therapy was started after 5 weeks of second surgery and 11 weeks of first surgery. Radiation was planned for 33 sessions everyday M-F and now I am in recovery mode.

In Summary, here are the timelines I went through:
Jan 2022-Jan 2023: Dentist, Endodontist, Kaiser PCP, Kaiser Oral/Maxillofacial Pain MRI test, changed insurance because wasn't happy with Kaiser
Feb 2023: Orthodontist who discovered lost Maxilla bone, PAMF ENT doctor biopsy
Mar 2023: PAMF pathology, UTSW pathology, UCSF Head & Neck, UCSF MRI, UCSF biopsy slides review, all confirmed that Ameloblastoma benign tumor
Apr 2023: Stanford surgeons meetup, leg CT scans for reconstruction
May 2023: Stanford tumor resection & reconstruction surgery
June 2023: Stanford pathology confirmed that Benign turned into Carcinoma from removed bone tests and tumor mass tests
July 2023: Neurosurgeon skull base surgery
Aug 2023: Radiation started
Sep 2023: Radiation ended
Oct 2023-Current: Recovery

Good luck with that surgery, is it outpatient surgery? I am not getting any tears from my left eye, I have to ask my surgeon during my next appointment. The standard answer I am going to get is wait for an year for the inflammation to go away and the body to settle down from the 2 surgeries.

I am going to Mayo and have been for all treatments. As a matter of fact, I’m headed there next week for minor surgery for a blocked tear duct which happened during the 10 1/2 hr surgery.

No worries, the info you have been providing is very useful in this discussion board. That's what has inspired me to post about my story here.

@kkd In 2007, they basically carved away as much jaw bone as they could (and two teeth) while leaving enough along the bottom of the jawbone to regrow/reconstruct. The bone mostly regrew, the nerve recovered over months - then I had a small bone transplant from far back in my jaw. Then dental implants.

If @therock or anyone else had maxillary, I either missed that detail or forgot.

Yes, mine was in the left maxilla. Immediate reconstruction with fibula free flap and posts put in at time of surgery for implants later on. And yes, maxilla is very rare for ameloblastoma

@therock Was yours Maxilla Ameloblastoma? @tomschwerdt said that no one in this group had Maxilla Ameloblastoma.

That is correct, Tom, it was very rough. My dad went through very big spine surgery 2 times last year while this was happening, had to deal with that too. Unfortunately, the tumor grew that big because it had enough space in sinus area (Maxilla) and I did not go to dentist until I had tooth pain. Kaiser Oral/Maxillofacial Pain doctor said that it was due to TMJ that I was getting that pain after reviewing my MRI last year, he gave me mouth guard to wear in the night so I don't grind/chew on my teeth in sleep. It actually helped with my pain, but I found 4th loose tooth even after wearing that. Filed a complaint with Kaiser earlier this year even after I left them, after I came to know about the tumor, and they decided that I did not give all my symptoms to the doctor so they did not do MRI or look for other areas other than where I reported the pain (near my ear).

If it was detected when my dentist discovered 2 loose teeth in Jan 2022, I wouldn't have to go through all this. But we never know what the condition was back then, it was just a guess. We cannot reverse any of that, I am gaining energy back, slowly recovering from radiation side effects, started eating some soft solid foods.

What type of conservative surgery did they do in 2007 for you that it came back after 16 years? Please let me know if DM is better for this type of questions. I found this discussion forum helpful for me, so shared all my details here for others to know & learn as well.

Yes, Mayo Rochester has a great team approach. I had free flap fibula as well as immediate reconstruction of the maxilla. They even brought in the prosthodontist for the posts for the implants during surgery. The post surgical floor was very knowledgeable in the care of amelo patience. I had a 10 1/2 hour surgery.

@kkd Wow, that sounds really, really rough.

Best of luck on your recovery. You're the first person I've heard from with a maxillary ameloblastoma.

It does not surprise me your tumor didn't have the BRAF V600E mutation - from what I could find in the literature, that mutation shows up in somewhere around 80% of mandibular ameloblastomas, and is rarely if ever seen in maxillary ameloblastomas.