Waiting for What Is…

Today…I go for my annual MRI…and to see my neurosurgeon…I feel better than I felt…this time last year…I have every reason to believe that I will get a good report…

And…yet…

I’m pensive…could I be wrong…

Bertha…says…of course I could be…but…she also says…it’s wasted energy to focus on the…what ifs…when…I’ll know soon enough…what is

She says it applies to all areas of my life…not just…Chiari check-ups…

Jane

Chiari Be-Aware…

This hasn’t been my best week…not my worst…just not my best…I just haven’t felt quite right…that’s how I experience Chiari now…it’s a feeling in my head…that isn’t exactly fatigue…it isn’t exactly a migraine…it isn’t exactly brain fog…but…yet it is…

Not easy to explain…but it has been accompanied by whining neck muscles…and a little extra numbness…

I’m one of the lucky ones…I had decompression surgery January 2011…to make more room for my severely crowded brain…according to my neurosurgeon…I have made a complete recovery…and have a normal life expectancy…all good news…

Now…you may be asking…what the heck is Chiari…and…you wouldn’t be alone…although an estimated one in one thousand people have this condition…most people have never heard of it…it’s not even on the diagnostic radar screen of many doctors…

In fact…as a nurse…I had only heard of the condition once…before I was diagnosed…

In layman’s terms…Chiari Malformation…is a malformation of the base of the skull…making this area smaller than normal…which crowds the Cerebellum…and the tips of the Cerebellum…called tonsils…are forced out of the skull…and down the neck…where they crowd and damage the spinal cord and block the flow of spinal fluid…in my case…spinal fluid was being forced into my spinal cord…creating a condition called…sryingomyelia

This usually happens over years…obviously…I was born with the skull malformation…but I wasn’t diagnosed until my mid-fifties…although…I had symptoms for years that no one put together as Chiari…

My symptoms were…numbness in my face and arms…dizziness…headaches…pain in my neck and shoulders…pain in my hip…mild scoliosis…getting choked easily…

While my symptoms were annoying…I lived with them for years…although…left untreated…and surgery is the only treatment…symptoms can become life threatening and debilitating…

Some of my friends have asked why I refer to myself as a…Zipper Head…so…for the first time…I am sharing a picture of my incision…I think it’s easy to see how the name came about…

I’m telling you all of this…not to whine…but…September is Chiari Malformation Awareness month…and I’m doing my part to spread the word…

If you…or someone you know is having any of these symptoms…please mention it to your/their physician…the condition is diagnosed with an MRI…and…although the surgery wasn’t fun by any stretch of the imagination…I’m certain that I would not be getting the same good news from my neurosurgeon…if I had not had it…

Jane