Rudolf
Hi. In 2007, when I was 13, I started to get pains in my forehead. I went to the doctor and they gave me medicine for pain and a small dose of anti-inflammatory medicine. The pain continued and got worse. I was sent for a MR scan and from there immediately to a neurosurgeon. He gave me large doses of anti-biotic and I received stronger pain medication as well, but it did not help and the doctor decided to operate on my head (2008). An infected part of my frontal skull was scraped off and was sent for biopsy. Results was negative for cancer, TB and any other known pathogen.
At first this seemed to work, but in 3 months time my headaches returned and was worse than before. Another operation was done on me and this time I stayed in the hospital and received anti-bionics with an IV for 2 weeks. Again it was sent for biopsy and results returned negative again.
I stayed on anti-biotic for the rest of the year. At the end of 2008 my CRP and ESR levels (this is the indicators used by doctors) rose and I felt a pain in my chest. I went for a special scan (bone density scan). This showed that I had strange bone activity in my 3rd right rib. I went for a CT to look at the rib. It was swollen and had small holes. My head however was totally recovered with no infection or weaknesses of any kind. My rib was removed and I stayed a week in the hospital on anti-biotic.
4 Months went by and I had no pain or anything. I went to the dentist for regular hygiene checkups. He found my gums at the back was swollen and took X-ray scans. My back molars wasn't growing in the right direction and pushed my other teeth up. This was common and a specialist removed all 4 back molars.
3 weeks later I had pain in my jaw. I revisited the specialist and he gave me a regular dosage of anti-inflammatory and anti-biotic. The pain continued and my jaw started swelling. He did research and talked to my previous doctors and they concluded that I have CRMO.
The specialist wanted to try something different and I received Hyperbolic Oxygen treatment. This means you lie down in a tube (a bit bigger than a MRI) and pure oxygen gets pumped in the tube. The tube also get pressurized to increase your oxygen intake. This was said to make absorption of my medication better.
I received 20 (4 weeks) of these treatments, but it didn't seem to help, because the jaw pains and swelling went on.
In 2010 I went back to my physician and he continued with research. He discovered in multiple case files on the internet that anti-inflammatory had a better effect than anti-biotic. I then stopped using anti-biotic and started with anti-inflammatory.
It's now 2011 and I still have CRMO in my jaw, but luckily no other places is detected to have it. Recently I went for another bone density scan and it confirmed that only my left jaw is infected.
The symptom's that I have are swelling and pain. Luckily this is only 2 symptoms and it comes and goes with periods of 3 weeks between occurrences. The pain is still really intense and sometimes my jaw is so swollen that my mouth only opens about a centimeter.
Another thing the doctors and case reports makes clear is that to operate on CRMO doesn't help. Only extreme cases when no other option is available should there be operated on the patient. Research shows that no successful treatment exists and that CRMO goes away in time.
If anyone has new information please reply on this post. My best wishes and prayers to other people with CRMO.
Thank you