Our Intro

So, why am I picking now to begin our journey's blog?  I am hoping to help other families go through this wild and scary ride called Chiari decompression surgery.  My goal is to chronicle our ups and downs in the next few months. I'm sure there will be lots of both!  I have found a handful of blogs out there that have helped me know what to expect in the coming few months, and I figure the more out there, the better.  Each kiddo is different, and not one experience is like another, but I have found seeing some real life experiences out there is very helpful.

Let's start with who you are reading about.  My husband and I grew up and currently live in the Midwest.  We have 2 wonderful kiddos. W is our rambunctious, Star Wars loving, 4 year old son, and G is our good natured, rule oriented 7 year old "Chiarian" daughter. We are as normal of a family as they come. Two kids, two dogs, a house and a very supportive family. All of which we are so very thankful for.

G's surgery is scheduled for later this month, and it feels like the date on the calendar is flying at us at warp speed. So much to do and prepare for, so little time.

So, you have found this blog, and thank you for reading.  Given you are here, I assume you already know what Chiari Malformation is, but just in case you do not, below is a quick overview from the site ConquerChiari.org's Awareness Brochure" The full brochure can be found by clicking here:

"Chiari Malformations are a set of neurological conditions which afflict approximately 1 in 1,000 people (300,000 people in the US), causing debilitating headaches, neck pain, weakness and numbness in the limbs, balance problems, visual disturbances, and a host of other symptoms. Chiari Malformations are located at the base of the skull. Part of the brain, the cerebellum, descends out of the skull into the spinal area. This results in compression of parts of the brain and spinal cord, and disrupts the normal flow of cerebrospinal fluid (a clear fluid which bathes the brain and spinal cord). If left untreated, Chiari can lead to the development of a fluid-filled cyst in the spine (syringomyelia) and cause permanent nerve damage and paralysis. Chiari is a complex disease which is poorly understood, and being diagnosed is an overwhelming experience. Patients are thrown into a whirlwind of medical jargon, tests, and surgery, all the while not knowing how things will turn out in the end."

Thanks for stopping by, and happy reading.  Feel free to drop me a line or ask a question. 
-SuperChiariMom (SCM)