March 3, 2010

My Fibrous Dysplasia Story

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.


Tanya said...

Sean, You read my mind... I was just about to email you and ask about your story when you updated your blog. Thank you so much for sharing, and I'm so, so sorry for all you've endured. I know you must be so thankful to have found Yvette and to have such amazing support in her.

Have you ever been in touch with support organizations like the FD Foundation or the MAGIC Foundation? I've found more support for Lauren and our family, and it's just been life changing for us! I remember how scared and alone we felt when we first learned about Lauren's disease, but after attending the MAGIC Foundation's Medical conference in Chicago, we felt embraced and strong...and certainly not so alone anymore. You might think about attending or at least getting some online support.

Also, the FD Foundation has started an informal listing of experienced doctors who treat MAS and FD. Perhaps you can find a pain management specialist in your area that's listed with them.

You might check with NORD and the NIH too??? If you ever want any information, I'll be happy to email you-

Do you mind if I ask where and who did your craniofacial surgery? Do you feel you have fully recovered?

I can't blame you for not wanting to have such an invasive CF surgery. It's scary for all of us! Lauren's sphenoid is terribly affected w/FD too and is slightly compressing her optic nerve, thank God, however, her vision is perfectly fine! I hope yours will stay fine too!

My prayers remain steadfast for you and Yvette, especially with your appt. tomorrow! I so hope this doctor will be a perfect fit for you, with lots and lots of CFD experience! Please keep us updated!

One last thing... Posted on my blog is a link to to vote to take Rare Diseases to Washington (the brainchild of Catherine Calhoun who heads up the MAS division of the MAGIC Foundation) and it includes FD. Please consider voting for this important effort and sharing with your family and friends. One thing I've found is that to sit back and do nothing is just unthinkable. We all must work together to raise awareness for research dollars to find treaments and cures!

We'll be checking in on you- hang in there and God bless-

Tanya and Family

yealc said...

Thank you so much for the prayers and information. I will state the Sean is a strong silent type so I'm the one that looks for the information :)but I would appreciate an email with the information you offered (

I asked Sean if he felt he had recovered from his surgery and he said yes. From my point of view it took about 14 months for him to fully recover.

The doctor that performed Sean's surgery was Mark Bryniarski. Dr. Bryniarski has since left Colorado so we will be looking for another doctor to monitor the growth.

I will make sure we go to and support that initiative.

God bless,