Two Years and Counting…

I’m celebrating today…it’s my friend’s birthday…but…that’s not why I’m celebrating…and…at our age…I’m not sure she is either…but regardless of birthday wishes…I’m celebrating my two year anniversary…

That’s right…two years ago today…I had posterior fossa decompression…due to Chiari I Malformation

I remember getting ready for the surgery…it was such a surreal feeling…I think the main thing was…not knowing what the outcome would be…not really even knowing what to expect…there isn’t a lot of medical information out there about what to expect following the surgery…

I think that’s because…they simply don’t know and can’t really predict…how anyone is going to do…it’s pretty individualized…and depends on the extent of nerve damage prior to surgery…and other co-existing conditions…so…they just don’t say…

So…that’s why I write about my Chiari experience from time to time…just in case there’s someone out there…who needs to read about it…

Honestly…from my instant gratification standpoint…it seems to have been a slow recovery for me…although I went back to work at three months…I honestly didn’t feel like it…and I struggled the two months I worked until summer vacation…

The next school year was better…but…I still didn’t feel that great…and by early summer…just before eighteen months out from surgery…I thought this was just gonna be the rest of my life…foggy brain…numb arm and face…frustrations and aggravations…

Then…suddenly…at eighteen months…things seemed to rapidly start getting better…the numbness improved…I had a great MRI…showing continued improvement…and…the fogginess was gone…

On the fogginess…it was the same time that I started eliminating processed carbs…yes…and sugar…from my diet…so…I can’t be sure…what helped…if it was just time…or…no carbs…but…the good thing is…feeling better is definitely a motivator to keep me following my new dietary lifestyle

Fast forward another six months…and it’s today…and…I continue to improve…my stamina is better…until a couple of months ago…exercise made me feel worse instead of better…I’m actually building up my sick days again…haven’t had to take one so far this year…

I did read somewhere that full recovery from the surgery could take up to five years…at the time I thought that was crazy…how could it possibly take that long…but…now…I realize…it is a slow process…but…like the tortoise…I’m winning the race

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