The Bone Monster and me- my battle with myositis ossificans.

My Battle with the Bone Monster

Today I received all my medical records from my oral surgeon’s office.  I’ve been looking through them and discovering things I did not know and remembering things that make me want to cry even now. 

It all started in the summer of 2001, right before I started my senior year of high school.  I was 18 and I had all four of my wisdom teeth taken out.  No biggie, right?  Yeah . . . that was the beginning of my battle with the bone monster, which is commonly referred to as myositis ossificans.  However, I was not properly diagnosed for five months, during which time I was tortured and underwent numerous tests and procedures.

Needless to say, I had a pretty crappy senior year, and no one could understand why I had to leave school early every Friday for a couple months.  The doctor was sedating me and "cranking" me every week.  This entailed the doctor putting me to sleep and using a crank to open my jaw.  

My friends could not sympathize. I went into a deep depression that continues to this day.

Within a month of having my wisdom teeth removed, my mouth opening had reduced to less than 1 cm.  The original doctor tried a few different medications and manipulations of my jaw, and I was eventually referred to my current oral surgeon, whom I call my favorite doctor of all time, Dr. Michael Duffy.

For those of you who are healthy and/or have never had a rare or undiagnosed disease, it is extremely disconcerting and emotionally draining to have your motives questioned as a patient.  One doctor in particular, I will call him Dr. Pain (for obvious reasons), believed the symptoms I was experiencing were psychosomatic.  Essentially, he was accusing me of making it up and clenching my jaw on purpose.  I will never forget one torture session, in which he forced my mouth open with tongue depressors and stuck something in it (a bite block?) to keep it open for an extended period of time.  I was crying and screaming and the nurses looked horrified.  To this day, I believe he caused me much unnecessary harm and definitely aggravated the disease.  I also blame him primarily for knocking out two of my teeth and giving me black eyes during a procedure that entailed two doctors, one on either side of me, cranking my jaw open on both sides at the same time.

Thankfully, Dr. Duffy did not believe my problem was psychological.  He was kind and patient and very smart.  In his notes, he says, “This is an unusual case, very unusual, very difficult and I’ve never seen anything like this in 30 years of practice.” He went on to consult with doctors all over America and do research back to 1966.

Essentially, I was found to have myositis ossificans affecting my coronoid, pterygoid, masseter, and temporalis muscles- all around my right jaw joint.  My opening closed to 2 mm at the worst point, and I could barely eat, could not brush the inside of my teeth, had difficulty speaking and laughing, and when I was sick I almost choked on my own vomit because my mouth just would not open.  I had to take a strong drug called Didronel for several months, which was supposed to stop all bone growth in my body and cost $200 a month.  At the time, this was an experiment, because no one had ever used this drug for this specific disease in this specific area of the body. 

Every surgery I had related to this disease is described in detail in Dr. Duffy’s notes.  He used phrases like “We got a huge chunk of bone out of there” and “It’s really impressive what has happened with her bone since we took her off Didronel . . . She’s laid down twice as much bone.”  Also, during the second major surgery I had for this condition, his notes say, “Once the mandible was exposed . . . low and behold the area of bony attachment was much wider, thicker, and greater than I thought.” During that surgery they took out a lot of bone and put in a titanium plate.

A couple years later, my opening was totally shut down again, requiring another major surgery. Doctor’s notes from that one included: “This was just unbelievable what had taken place. The [titanium] plate and screws had bone over it.  She had completely filled in our gap and then some . . . I had to grind the bone off of the plate and screws . . . we took off the first section and got a big huge piece of bone . . . I mean this was impressive. I’ve never seen anything like this and probably never will again.”  Yeah. They took everything out that time- all the muscles involved, the titanium plate, the bone, and my right jaw joint.  The theory was that now there should be nothing left for bone to grow on.

(Incidentally, this is when I began having my problems with painful swelling in various places after surgery, getting more severe with each surgery I had.  This problem has yet to be diagnosed, and it is going on 10 years.)

So fast forward 5 years from that last surgery to 2011.  A CT scan showed that I had not laid down any bone at all, and Dr. D thought I was ready for reconstruction of my jaw and joint.  I was ready, my insurance approved it, and it happened in November of 2011.  The point of this surgery was to fix my facial deformity, which was caused by the last surgery that removed the muscles and joint on the right side of my jaw.  Yes, it had opened my mouth to a point it had never been since I had my wisdom teeth out, but it also caused me to literally lose my smile and any symmetry in my face.  Deaf people could no longer read my lips (one deaf lady got furious with me, thinking I was mocking her). I was deeply depressed about my appearance.  During the reconstructive surgery, the right side of my jaw was fitted with a specially designed titanium plate, and I got a titanium right joint. The end result of the reconstructive surgery was okay, but I still can’t smile without looking deranged, my right eye leaks, and my right eyebrow can't arch.  At least I’m hinged again, although I used to love telling people I was unhinged. 

And this may not be the end of the story.  The Bone Monster could come back any time, and my titanium joint will eventually wear out. 

Also, on a sad note, Dr. Duffy is retiring next year.  He told me a couple months ago, and I burst out crying.  Right in front of him and his nurse.  I was inconsolable, even as I drove home, and I realized that this man, this wonderful, special, one-in-a-million doctor had become a fixture in my life and a father figure.  He has always been there for me when I needed him, and I will miss him dearly.