In Living Chiari…

September is Chiari Awareness Month…yesterday…I asked my friend to remind me to write about it today…he didn’t…it did…by waking me up with…a headache…

Two-and-a-half years after surgery…I am doing remarkably well…I am able to work every day…exercise…and…live what I consider to be a normal life…my MRIs are good…my neurosurgeon says I’m doing great…

Does this mean I’m symptom free…

No…

And…I never will be…that’s just the way it is…funny thing is…sometimes…I can’t tell what is…Chiari…and…what is just…life

Take this headache for example…most people with Chiari have headaches…that was probably my major symptom…along with numbness…but…a lot of other people have headaches…that do not have Chiari…so…how do I know…

Bertha…says…I don’t…I can’t…because…I can never be a person…who doesn’t have…Chiari…it’s as simple as that…

She says…it’s the perpetual…chicken or the egg question…the one that never gets answered…

And…she says…it really doesn’t matter…at this point…if my headache is Chiari related or not…it’s just a headache…and…the only question is…what do I do about it

Of course…she goes on…to relate that to my life in general…reminding me…it doesn’t matter how things got to be…the way they are…in any situation…the only question is…what do I do about it

Hmmm…

Jane

PS…please take the time to click on the Chiari link…for more information regarding this underdiagnosed condition…

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