Alicia
During a heavy snowfall in Orange over 7 years ago, I started to have this constant headache along with vertigo at the time that would not subside. After many brain MRI's, full body scans, CT scans, natural therapies, trialling 13 different prescription drugs, Botox, 4 infusions of Zoledronic acid, adding 4 Greater Occipital Nerve blocks and eventually pulsed radiofrequency zapped to the Nerve. Since then, I have learned so much about Fibrous Dysplasia, Occipital Neuralgia, and what is inside my skull. (Not just a brain so it seems).
Since that time, I have learned to live with the constant headache as my ‘normal’ and although I tire at the end of my working day, I give it everything I’ve got. The Fibrous Dysplasia (bone tumour in the middle of my head) is currently stable, just filling a space (sphenoid sinus and surrounds) that should be empty. Ever had a sinus headache? Well there is an extra sinus pocket inside your skull that most people don’t know about. When you get sinusitis in there, you’re in a world of pain.
So back to Snoopy in the snow, on that day in orange, I didn’t know what was ahead of me.... I’ve been very scared, confused, angry, frustrated and more. The frustration comes from the unknown, the rarity of the disease means that there is not a clear pathway to diagnosis & management. I’ve personally spent many years researching and connecting with other Fibrous Dysplasia survivors.
I feel very lucky! Lucky that I only have it in one bone, meaning I have monostotic Fibrous Dysplasia. Fibrous Dysplasia is rare, the exact incidence and prevalence is unknown. Mild cases may go undiagnosed, making it difficult to determine the true frequency of FD in the general population. There is no cure and not many doctors know how to treat it. It is a mutant (random gene) that I was born with that forms in bones. My Sphenoid bone thinks that it should grow Fibrous bone on it and from it. It usually effects the long bones where it grows inside the bones which causes the bones to be stretched, thinner and very brittle which break very easily.
Knowing that it is stable at the moment means that the nerves that it is encroaching on and entwined around in my head (maxillary nerve, optic nerves and carotid artery) are safe at the moment. Apart from having less feeling on the left side of my face from a partial impingement of the maxillary nerve - I’m all good. Telling my story is purely to explain a little about my hardly heard of bone disorder and one day hopefully enough research will be done to find a cure.
