Wednesday, January 16, 2013

I'm going to include posts from my CaringBridge site as I've spent more time on there lately:

Background Story:
Several months ago, an MRI revealed Chiari Malformation Type 1. This diagnosis not only explained the extreme bouts of dizziness, but also a lifetime of headaches, fatigue and memory problems. Basically, Chiari has hindered my health since birth. Now at age 44, symptoms have exacerbated making every day challenging. Symptoms have increased to include the following: continual headaches, almost constant dizziness, occasional vertigo, left arm/leg pain, weakness, and tingling, difficulty swallowing, trouble with word finding, peripheral vision loss, blurred vision, short term memory loss...and this list goes on.

After months of seeing doctors and specialists, there is finally a plan of treatment. On January 30, 2013, I will undergo a posterior fossa decompression, a brain surgery (craniectomy), in which my neurosurgeon, Dr. Dong Kim, will remove a piece of bone from my skull, and will cut an opening in the dura (lining) of my brain, relieving the pressure on my brain stem. A few weeks ago, Dr. Kim discovered an arachnoid cyst on my cerebellum, therefore, during the decompression he will perform a second procedure to fenestrate (poke holes in) the cyst, allowing the cerebrospinal fluid within to drain. Prayerfully, the fenestration will prevent a subsequent surgery to place a shunt.

I am blessed and fortunate to have many supportive loved ones and a very supportive group of co-workers. In my work as a pediatric peri-operative nurse at McLane's Children's Hospital in Temple, TX, I have been fortunate enough to meet many families with children undergoing this procedure and living their lives with Chiari Malformation Type 1. I see the importance of support and prayer during these difficult times. I ask that if you honor me by remembering me in prayer that you lift up also my loved ones, my work family and all individuals suffering from and affected by Chiari Malformation Type 1. This surgery is not a cure, it is one method of managing symptoms.

Chiari has no cure. It is often overlooked and misdiagnosed. Like myself, many people have had Chiari-related symptoms for years and have been told by many well-meaning physicians, friends and loved ones, "it's all in your head" (pun intended). It IS all in our is estimated that 3% of the population have Chiari Malformation Type 1. My desire is to increase awareness and provide information and support for my fellow Chiarians and their families. Living a life of feeling inadequate has had a severely detrimental effect on my life in many ways. A Chiari diagnosis provides validation...a moment of, "YES!!!--It's not just me...I'm not crazy!"..and then reality sets is a lifelong disease..a foe that when unseen was to be endured, but now visible--to be conquered.

As for Chiari awareness--I wonder--What would happen if physicians connected the dots? In my lifetime I've had the following: adhesions (Left side of abdomen/colon), stress fractures (left foot, left tibial plateau), left clavicular lipomas, unexplained breast discharge, crumbling teeth, scoliosis--all requires surgeries, dental work, chiropractic visits.. No one ever connected the dots. Each of these can be related directly back to Chiari. Chiari was screaming inside of me..yet no one was listening..and I was ashamed, I felt like a financial burden and thought maybe I was crazy. I can trace my symptoms back to age 13. How many physicians failed to connect the dots in the past 31 years? At last count---18 different physicians have treated me and never even considered Chiari. This alone is a reason to increase awareness. In an effort to do this... I am working on a separate blog for Chiari Awareness, have started a Facebook page for awareness..and will be updating this site when those are available for viewing.

Thank you for reading, for praying and for any efforts you make to increase Chiari awareness.

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