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.
6 comments:
Hi, Sean!
Your blog post came up on a Google alert I have set up for FD. I am so sorry for all you've endured with this terrible disease... then adding insurance complications surely made things far worse.
My 9 y.o. daughter has MAS/FD and I am hoping you won't mind sharing some information. She too has FD widespread in her craniofacial bones, sinuses, and skull base. Currently she is doing well with no outward deformities and her vision and hearing are both good. My question for you, as an adult with FD is, Has your pain been terribly bad during your adult years? What kind of pain meds have worked best for you?
I've been to medical conferences and researched the living heck out of this, but have found that although IV bisphosphonates work wonders for pain in orthopedic FD, it does very little to help with craniofacial FD. Do you have any words of wisdom?
My thoughts and prayers are with you as you fight this terrible battle against FD and our medical system. Thanks for any insight you might be able to give.
Kind regards,
Tanya (mom to Lauren, MAS/FD)
P.S. I'm uncertain if you see an endocrinologist, but that's who will do Lauren's pain management if/when the time comes, as not too many Pain Management Specialists want to take on children-
Tanya,
This is Sean's wife Yvette. Sean is having a bad day with his fibrous dysplsia and is not able to write but will respond later.
As his wife I can tell you that as an adult Sean's pain is usually at 8 on a 10 point scale and has gotten worse as he has aged. This is for two reasons: 1. he was not diagnosed as a child so it was not discovered when the most help could be given. 2. His bone is still growing which I'm sure you know is rare as the growth usually stops with puberty. I trust that your daughter will not have continued growth.
As for pain meds: Sean has very dramatic reactions to many drugs/therapys as they cause him to become aggressive. For this reason the main drug he uses is Darvocet. While low use of pain meds don't remove all the pain it does allow him to be function enough to have some quality of life while not being so angry that the family suffers.
Sean has had surgery in the past two years but it was too late for them to do much about the bone putting pressure on the brain. That surgery would have needed to be done before the bone was surrounding the optic nerve. Sean's vision has not yet been impaired by FD although he did have lazy eye as a child and has independent vision.
When Sean is feeling better I will have him place his comments about the experience here for you to view.
We will keep your family in our prayers and if you would like to contact Sean directly please feel free to email him at yealc@yahoo.com. God Bless!
Hi Sean,
I'm sorry to hear you're in so much pain. I haven't had any pain although I have fd of the sinuses, skull, jaw, etc. In 2000 at the age of 34 I had a craniotomy and decompression of the optic nerve - they also removed fd bone from the skull, sinuses and moved my eye and socket over since I was being disfigured by the fd. To date, it hasn't grown back. I'm surprised there are no doctors willing to operate on you. Our healthcare system is so bad and it scares me to think what will happen to those of us with rare diseases in the future. I will keep you in my prayers! Marie
Thank you Maria,
I want to state that I have received great health care. The reason I can not have surgery to remove the FD bone internally is that it has not remained porous. It has formed into true hard bone and is embedded in area's of my brain and optic nerve. This means that even going in to try to remove the bone would be extremely risky and is not a risk we are willing to undertake. The bone is against/in my frontal lobe and as this area of the brain affects so much I am not willing to lose brain tissue in this area.
Take care and God Bless
Sean
Tanya,
Yes the pain has been bad in my adult years but we trust that your daughters will never progress to my level.
It is a horrible thing and the only med I have found that has helped is Darvocet. It does not get rid of the pain but manages it for me but lets me function.
I just wrote a new entry on my latest pain management visit and I have another Friday. I will keep this blog updated.
Nothing has ever gotten rid of my pain. Things have helped but nothing has ever fully taken the pain away.
Sincerely,
Sean
Thanks Yvette and Sean for your honesty and insight.
Let me just say that even being diagnosed as a child, there is still little to nothing that can be done to help my daughter. Obviously she's being monitored through CT scans, but nothing will be done unless symptoms arise: e.g., numbness, stroke-like symptoms, slurred speech, deformities, vision and/or hearing loss. At that time surgery might become an option. Luckily for her, she currently only has mild sporadic pain in her sinuses and skull base.
I've been in touch w/doctors at the NIH and around the world about CFD and the popular belief among experts is that while orthopedic FD quiets after one is grown, that craniofacial FD continues to slowly progress throughout adulthood. Hence my questions about pain management. I've heard that CFD is much more difficult to control than ortho. FD, and that IV bisphosphonate infusions offer little relief. My concern is the amount of pain she might face in the future and I'm just trying to learn of other's experiences with different medications.
I am happy to follow your blog and hope to learn more of your experience as time goes on. Thank you so very much for being willing to share such a private part of your life. To all of us with growing young children, the adult experience is important for us to learn about.
We will certainly keep you in our prayers, and I am just so sorry that we had to "meet" this way. If it helps at all, you are not alone...
Stay strong and God bless- We'll be checking in on you! Take care-
Kind regards,
Tanya
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