Osteonecrosis (ONJ)
My problem with ONJ started on the Easter 2007 weekend. I had terrible pain in my ear and I thought I had come down with an ear ache. On Monday I called the physician who was on weekend duty for a house call. After checking me out he could find nothing wrong with my ear or inner ear that would indicate an infection. With an ear ache ruled out I figured that my wisdom tooth must be acting up.
Tuesday morning first thing, I made an appointment right away for later on that day. The dentist took one look in my mouth, shut his light off, raised the chair to the up-right position and said there was nothing he could do for me! He said I would have to go to a specialist, an oral surgeon, for further treatment because I had exposed bone on the lower part of my jaw.
I was lucky to get an appointment the very next day with an oral surgeon in the next larger city. As I usually do when I visit a new doctor, I take along the most up-to-date medical history document that I have with me. That way I do not leave anything out and it is easier for them to read it as it is for me to try and explain my LCH disease.
After a short examination he told me that I had Osteonecrosis. And it was due to the intravenous use of the bisphosphonate Zometa for which I had been receiving as part of my chemotherapy. At first I could hardly believe him and said Zometa was supposed to be strengthening my bones not destroying them. He agreed, but with the exception of the jaw bone. He said the "condition" is usually triggered at the site of previous tooth extraction.
I remember the last time I had had a tooth extracted. It was before I went to my second stay in the pain clinic in Bad Mergentheim in 2006. I had two teeth pulled on the right side of my mouth before I went because they were loose and I didn't want to have any problems in the clinic. Still, I did have a problem. One wound did not want to heal and I had to visit a dentist in Bad Mergentheim for him to close the wound and give me an antibiotic for the infection.
Back to the present. I had not only ONJ complications on the right side of my mouth where the teeth had been pulled, but also on the left side. He scheduled me for two appointments to do some minor work; removing what was left of some roots and scraping and cleaning up the exposed bone. He also had to pull a tooth on the left side because there was an infection underneath. He cut the tooth into four pieces with a saw and pulled each piece separately. He said he was afraid that if he pulled it in one piece he might pull up some of the underlying bone! He also started me with penicillin and after that an antibiotic. I was on the antibiotic for eight weeks!
We had a very serious talk on what I would be facing in the future with ONJ. My main concern was if I lost portions of my jaw bone would my face be disfigured. He said that I would loose parts of my jaw. He did not know when or how much but yes I would loose some. It could be granular size or larger chunks and if that happened I was to call and then go to his office right away for him to remove it.
Since my last visit with the oral surgeon I have been going to my family dentist here in town every three weeks. He checks for any changes and puts medication around my teeth to keep any decay in check. He also found that my "upper" dentures had been rubbing the roof of my mouth and there was the beginning of a soft tissue injury. He put medication on the spot and also sanded down my dentures. So far I haven't had any problem with that spot any more.
I brush my teeth now at least two times a day, plus I have a "water pick" which I use after eating to clean the exposed bone and have a medicated mouth wash to kill bacteria. Needless to say, it is a hassle just to eat anything!
At my last check-up my dentist said there was a larger portion of bone loose and would have to be taken out in the next few weeks. Unfortunately what the oral surgeon had predicted was starting to come true. How depressing!