ONJ

    ONJ - What is ONJ - Osteonecrosis of the jaw is a condition where the jawbone is exposed and not covered by gums..... and that is what I had.  Um ok, what?  

    So this all started back in the beginning of April of 2022 when I ate some starburst candy and a few days later, started feeling pain in my lower left jaw area.  At first, I went to my family dentist, the normal found some cavities in the area and filled them.  However, the pain still was there, in the same area, but below my left jaw, a dull pain.  So I went again for a checkup and dentist said well you might need a root canal (in which they didn't do... but dentists in the 90s used to.... whatever).  That lead me to another dentist who did root canals and they took an pano image of my jaw, in which I commented, "I am a Stage 4 Cancer patient, how does that work with what your are doing" and I got a deer in the headlights look from the Dentist, my confidence fell at this point.  Another $600 and was told we will have the results back in 2 weeks.  By this time is was I beyond frustrated, and was thinking this more than a dentist thing, maybe it was something bigger.

    While speaking with my support group, the facilitator said that the head and neck cancer groups, go see this maxi facial surgeon, Dr Razavi he is like a Dental Oncologist.  I called to make an appointment, walked in and within 5 minutes I know I was in the right place after searching for a 1.5 months.  We did a CT pano-graph of the jaw and teeth structure and then rolled over to his computer - no see you in 2 weeks.  Razavi was able to spin the model of my jaw area like a 3D model, cut sections and see what was going on.

3D scan

    We determined that I most likely had early stages of ONJ and decided to remove the back two teeth to remove the pressure from the jaw.  It was likely that my jaw was already disintegrating from the inside and moving up dead bone to the surface where the teeth where.  As soon as I had a diagnosis, we told Oncology who immediately held my bone strengthening shots, XJEVA which guess what had a low chance of developing ONG.... fuck! Read the fine print

    

    In mid May 2021, we removed my two back left lower teeth.  I was pretty sad to see them go.  Within days, my jaw pain had subsided and my body started healing itself.  As we expected, within a month the dead bone of the jaw begin to surface and expose itself in the area where the teeth have been removed.  I had already switched to eating soft foods and eating on my right side of my mouth. 

mid June 22- rear white area is bone coming to surface

    By December of 2022, the ONJ was in full swing, allot of the bone was on the surface, but the scans showed even more deterioration within the bone.  The dead bone had basically put "holes" in my bone stretching towards my front teeth and the concern was the dead bone could undermine the front teeth and then those also would need to be removed.  We set up a plan to clean my teeth every 3 months, and switch to a prescription toothpaste called DenaGel.

    Somehow I never lost my front teeth.  By June 2023 a full year since all this started, my ONJ had really surfaced and bone was moving up towards the hinge in my jaw making it discomforting to eat.  Perhaps Razavi was in a good mood, and said let me just cut a little off.. I opened as wide as I could, heard him say, need Bone Clippers and then felt him put allot of pressure on the ONJ, asked me breathe, breathe and then YANK! it was out, followed by GAUSE, GAUSE, MORE GAUSE! It actually didn't hurt, it bled allot where it was attached to new gum underneath. Yes, my body did what it was supposed to do and grow new gum under the dead bone and force the dead bone out of my jaw.  I snapped this picture of how much ONJ was in my mouth and my new that this part of the cancer journey had ended, thank goodness!

ONJ - left, front of mouth, right - hinge of jaw