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

8 thoughts on “Chiari Be-Aware…

  1. Hello sweetie,

    My goodness you have been through it. I think you are so brave for showing your picture. I had no idea about this condition so thank you for sharing this wonderful and informative post. I think you are an inspiration. “HUGS” X

    • Thanks for stopping in Dawn…I am happy to be on this side of the surgery! Thanks for your encouragement and kind words…you too are an inspiration to many with your books…Amelia’s Story and Amelia’s Destiny!

    • Thank you, Beverly. That was the whole purpose of the blog…most people haven’t heard of the condition…of course I would be unusual…LOL! Appreciate your visit and comment!

  2. I just was diagnosed with CM-1 at the beginning of this month. I had been originally diagnosed with vestibular migraines by my neurologist and he sent me for an MRI to rule out a tumor — that’s when they found an 8mm herniation. I just had a CINE flow MRI this week and am waiting on results to see if I need surgery.
    Did any of your symptoms get better after surgery or has it just kind of stopped them from worsening?
    I am 25 years old and trying to finish my Masters degree in Biology while applying to med schools for next fall. I don’t know when I will even have time to recover from a surgery like that (if I have to have it now)…. I think that’s what stresses me out the most.
    Anyways, thanks for sharing!

    • Danielle, Thanks for your comment. I so feel and understand what you are going through right now…I think the not knowing is the most difficult time. I wish I could take it all away from you.

      From my experience…my symptoms are caused by permanent nerve damage to my spinal cord caused by the syrinx and although most of them are better…they will not go away…thankfully they are minor and I’m able to tolerate them and live what most would say is a normal life…some would say I’ve never been normal… :)

      All my best to you!
      Jane

  3. I was decompressed in 2006 and afterwards, my doc said “You’re cured!” Not really. While my symptoms are quite a bit milder, they’re still there, especially when a strong weather system is moving in. I was lucky though. I caught it before there was any real nerve damage.

    I don’t know about you, but whenever I hear of someone complaining about weird symptoms, I always ask “Have you had an MRI?” And even then, when they say everything was normal, I still am like, “Yeah, but did they look at your tonsils?” They STILL won’t diagnose CM with tonsils dropping less than 5mm or something like that! And they don’t always do a CINE flow test as a matter of course! There’s probably A LOT of us out there.

    Funny, it used to be they didn’t know you had CM until AFTER the autopsy.

    • Roxanne,

      Thanks so much for your comment. Like you…I still know when the weather is changing…but…I’m also grateful that my symptoms are as mild as they are…it could have been so much worse.

      Yes…Chiari is always on my radar…with anyone…but especially with my family…I’ve insisted that both my daughters have MRIs due to some weird symptoms…and thankfully…they were negative.

      I am hearing about and meeting more and more people who either have Chiari or know someone with it…so it’s definitely becoming more diagnosed.

      Best of luck in your continued recovery!
      Jane

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