Diagnosed with Ameloblastoma

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.

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.

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.

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

Just wanted to also add an update from me- almost 2 months post op and I feel really good. My mobility in the arm is getting back to normal and I am able to have harder foods now and my speech is normal as well, they said that my quick recovery is down to age as being relatively young has aided me massively in recovery. The only thing that I’m tackling most of the time is the fact that it’s still pretty swollen it’s slowly becoming smaller but you can tell my new bone is still trying to settle it’s way in!

@anbar , really happy to read your update! I'm nervous waiting for my daughter surgery next month. Hope everything goes smooth. Anbar, may I know what kind of resection you went through? According to my daughter case, the oral surgeon will do the marginal resection, which preserve the continuity of the mandible. Is this similar with your case? Or you went through the segmented resection?

Thanks for sharing... Really appreciate it. Long journey to recover... I feel nervous to wait for my daughter resection next month, she's only 14... diagnosed with unicystic ameloblastoma. Next month the OMFS will do the marginal resection and after 6 month they will do the reconstruction...
It's really helpful when reading your experienced and situation... Get well soon @kkd

First of all it’s ok to be nervous especially when it comes to your own child but I will say this while the first few months may be challenging, you and your daughter can get through it if you maintain your support and willingness to be there throughout the big changes and the small ones. When it gets difficult do not be afraid to share the strength with your daughter and remind yourself that you will never be put in a situation in which you cannot handle. Your daughter is young and I can never imagine how she is coping but know that at the end of all this she will most definitely be a better and more brave person than she was before so there is endless positives to this journey!

My personal experience was that we did a full reconstruction of my jaw straight away we didn’t opt for the smaller resections just because I waited for my surgery to be after my school exams! Feel free to ask any questions we’re all here and keep us updated and remember everything will fall into place 💕

Did they do dentures too Anbar when they did the bone reconstruction? They did not do dentures at Stanford for me, they only did maxilla bone and palate reconstruction. I wonder how they do dentures now?

First of all it’s ok to be nervous especially when it comes to your own child but I will say this while the first few months may be challenging, you and your daughter can get through it if you maintain your support and willingness to be there throughout the big changes and the small ones. When it gets difficult do not be afraid to share the strength with your daughter and remind yourself that you will never be put in a situation in which you cannot handle. Your daughter is young and I can never imagine how she is coping but know that at the end of all this she will most definitely be a better and more brave person than she was before so there is endless positives to this journey!

My personal experience was that we did a full reconstruction of my jaw straight away we didn’t opt for the smaller resections just because I waited for my surgery to be after my school exams! Feel free to ask any questions we’re all here and keep us updated and remember everything will fall into place 💕