My name is Sean Cowlishaw and I have a rare condition (fibrous dysplasia of the skull). In short my skull has never quit growing and bone is surrounding my optic nerves, has filled my sinus cavities, and is putting pressure on my brain. My condition is extremely rare in that the bone growth did not end in puberty and the bone continues to grow to this day (I am in my thirties).
About three years ago I finally found a doctor that not only helped me find answers but that works closely with me and my family to assure us a high quality of life. I have also been blessed in that I have had good insurance (for the past five years) and a wife that understands the health care system. My wife and I have worked closely with our doctor to keep costs down for both us and the insurance company and to maintain a high quality of care (see my blog entry about cost containment).
As the Health Care Reform debate heated up in 2009 my quality of life was significantly lowered. The first blow was that my costs for specialists were raised due to the media and Congressional blitz about high quality insurance plans. At first this was not a huge issue for me as I have seen ever specialist possible and there is nothing they can do for my condition. The specialists had sent me back to my general practitioner for pain management and for almost a year my quality of life was the best it had been for a long time. I had one doctor managing my care and he took all aspects of my quality of life into consideration as well as doctoring my full person not just my fibrous dysplasia.
In February of 2010 the second and worst blow fell. I was called into my general practitioner's office and told he was no longer allowed to practice pain management. The clinic management has determined that because of the DEA practices of treating pain management doctors as drug dealers it was too big of a risk for their doctors to prescribe pain medicines. The clinic was only able to give us the names of two practices that are still willing to prescribe pain meds. One option will cost us and our insurance three time as much as our general practitioner. The other option costs over $1000 more a visit and is not covered by insurance. We have our first visit with the new doctor on Tuesday and will update this blog continuously.