I have had FD since child hood but the condition was not discovered until I was in a bad motorcycle accident and amazingly did not sustain any noticeable head trauma. Due to the severity of the accident (and the fact I was conscious - against all odds) the doctors did a full body MRI. To their amazement my skull was abnormally thick and not broken or fractured. This discovery led to mass excitement in the emergency room and eventually to the second best neurosurgeon in the military.
The year was 1993 and I was twenty years old and not ready to face reconstructive surgeries. Especially given the fact that the first doctor I saw was way to abrupt in his description of the surgical options. Since the medical records from these first visits were lost by the military I do not have a baseline of the growth in 1993 but I know the skull was thick enough to sustain a 40 mph impact with a retaining wall. Ironically FD saved my life.
I met Yvette later in 1993 and we married in 1997. I did not seek medical care for FD from 1993 until 2005 due to the fear of having doctors "crack open my skull and scrape it out". During these years I self medicated with alcohol (a story for another time). In 2005 a personal tragedy led Yvette to a counselor and she recommended a doctor for Yvette to visit. Once Yvette saw Dr. K he diagnosed her life long pain condition that no other doctor had diagnosed in 30+ years. She learned to trust and like Dr. K and finally convinced me to visit the doctor. Dr. K was able to win my confidence and to start a series of tests and specialists visits to determine what options were available to me.
I have seen various specialists including ENTs, pain management, and neurosurgeons. In September of 2008 I had facial reconstruction surgery in hopes that some pain would be alleviated if the nerves in my scalp were deadened. At this time the external bone of my skull was shaved and reshaped. It was also determined at this time that going into the skull was too risky as the bone is embedded in my frontal lobe and I have no desire to receive a frontal lobotomy. Since September of 2008 I have worked with Dr. K to maintain a pain management treatment and you can read more about that in my other blog entries.
Showing posts with label Sean Cowlishaw. Show all posts
Showing posts with label Sean Cowlishaw. Show all posts
March 3, 2010
March 2, 2010
Update on Sean's Pain Management Fight
I just returned from the pain management clinic. What an experience! I had to take a drug test and learned that there is a database (PDMT) kept by the state that my name is on due to being on pain meds. I have to say I was horrified to find that the state is tracking my prescription use. While I understand there being a drug culture what gives them the right to track this with out my knowledge?
This doctors "office" was crazy. The office was dirty and in no way felt like a medical facility. It was located in a warehouse and felt like one. There was no lobby and chairs had to be fetched from other rooms for waiting patients. The exam room was actually an acupuncture room that had once been an x-ray room. There was a fight (yelling) between one patient and the doctor and people walked out of their appointments. The staff was unfamiliar with this "satellite" office and needed our assistance to give driving directions to other patients.
Moving on to the consultation. Once again I am faced with the choice of being a guinea pig for new drugs and therapies instead of being allowed to just continue the therapy that my general practitioner and I have found to work. The doctor seemed competent but actually stated she did not care about what I had tried in the past she was just looking to start over with the process. She was more than happy to prescribe opiates but wanted to take me through all the trial and error I have already done. However her willingness to send info to my GP is reassuring as I will continue to consult him through all therapies. The next steps for this clinic is for my drug test to come back from the lab and for the PDMT report to return clean. Then they will determine if I can be accepted into the program.
Overall I was very uncomfortable with this whole visit and on Friday I am going to another pain management clinic to discuss alternative medications.
February 27, 2010
How We Manage Health Care Costs & Quality of Care
This is the story of how we have worked with our doctor to manage the costs and quality of care for Sean's rare condition and our families medical care.
To control our costs we utilize a few simple but effective practices:
I realize at this time it is popular to hate private insurance companies but we can not engage in that activity. During the five years that we have had private insurance we have received much more than we have given. When we have worked with the insurance company we have always been able to find a common ground that allows us a great quality of care while allowing them to control costs. We view this as a civic duty to assure that our friends, neighbors, and fellow countrymen do not have to pick up costs we could avoid.
Our experience with private insurance stands in great contrast to Sean's previous experience with the military and our private insurance has provided many options and speed of care that we do not see with our family members that have VA, or Medicare.
Sincerely,
Yvette
To control our costs we utilize a few simple but effective practices:
- We make sure our general practitioner (GP) has records from all other doctors and that we never have a test or receive new medicine without our GP's knowledge. This not only controls costs but keeps us from endangering a life by having conflicting prescriptions.
- We take our insurance Rx formulary (a list of prescriptions covered by our insurance) with us to all appointments and check to make sure any perscriptions given are on the formulary. If they are not listed we find a comparable Rx that is on formulary. Note: we have always been able to find a comparable Rx that is on the formulary or have been able to work with the insurance company to get the Rx approved.
- We retain copies of all tests, x-rays, scans, and doctor files. We take these with us to any new doctor so that scans etc. do not need to be repeated.
- Two people attend every appointment. This assures we hear and understand everything and that the doctor receives the full picture of our sickness from our and our family's point of view.
- We ask questions and understand our conditions and the treatments available as well as the risks and benefits of every treatment.
I realize at this time it is popular to hate private insurance companies but we can not engage in that activity. During the five years that we have had private insurance we have received much more than we have given. When we have worked with the insurance company we have always been able to find a common ground that allows us a great quality of care while allowing them to control costs. We view this as a civic duty to assure that our friends, neighbors, and fellow countrymen do not have to pick up costs we could avoid.
Our experience with private insurance stands in great contrast to Sean's previous experience with the military and our private insurance has provided many options and speed of care that we do not see with our family members that have VA, or Medicare.
Sincerely,
Yvette
How Government Health Care Regulations/Practices are Ruining my Quality of Life
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.
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.
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