Friday, November 8, 2013

So What is Wrong With Your Head?

Recently, I've had a few questions about my neck/head so I thought I would do a quick write up.  

Hi!  My name is Juju and I have a Chiari (key-are-ree) Malformation.  You can read up on the link if you really wish but I will give you a bit of a run down.  My brain stem sits a little lower than it should. It's amazing how a few millimeters can make that much of a difference.   

I've more than likely always had this.  It is possible for people to live with this condition literally their whole lives and not know they ever had it. 

Out of nowhere I started presenting symptoms.  Two years ago in December I was driving my daughter to dance class.  We were already running late and I can tell you I was pretty stressed out.  Looking back I'm not even sure why I was stressed out.  Clover was yelling at me from the back seat.  She had dropped something and in typical lil kid fashion it was the end of her world.  I whipped back around and handed her her toy, when I turned around to drive, I got dizzy.  Like the world is spinning dizzy.  Within a second it was over.  I turned the corner to dance class and waited it out.  After a little while I felt better but this spurred three months of doctor visits to figure out what in the heck was wrong with me.  Doctor number One said it was my ears.  Doctor number Two said it wasn't.  Doctor number Three sent me to a heart specialist.  Doctor Number Four said it was a panic attack.  Doctor number Five put a heart monitor on me for twenty four hours.  Doctor number Six put my head under a machine and found my Chiari Malformation.

So about three months later they had me somewhat figured out.  So now there was a diagnosis.  What is the treatment?  There really isn't any.  Other than having brain surgery.  There are two different types of surgery they can do.  They can put a shunt in to help the fluid flow more smoothly into my brain or they can push my brain back in my head.  Fun stuff right?  Not to mention pretty scary.  Right now my symptoms are manageable.  The list of things that I can do is far longer than the list of things I can't do.  And for that I am happy.  This may change in the future and that thought scares me but for now all I can do is take it one day at a time. 

Yes, sometimes my neck hurts.  My shoulders ache and some days I just feel totally off.  But I can still go grocery shopping, take care of the house and blog!  I am still taking care of my family and myself.  I have learned how to make adjustments to my life and some of my initial symptoms have faded.

Because my doctor does not want me aggravating my neck, she has me on restricted or short distance driving.  This has been the biggest hurdle.  Not to mention it has killed my social life.  It sucks.  I am very lucky to have a small but great group of friends who don't mind driving all the way over here to hang out with me.  I am very blessed that I have family and friends who don't mind taking a trip to the craft store or helping me get my daughter to dance.  I feel like every time something comes up I am conducting an orchestra to get us where we need to go.  I have swallowed my pride on more than one occasion.  I have also bought my share of gas cards.  My poor husband who hates shopping has taken his fair share of trips to Target.  It's been really challenging letting go of my independence.  To ask and rely on someone to help me out has been a very humbling experience.  It has also shown me how appreciative I am to have great people in my life.  My only hope is that someday I can repay their kindness.

I know in the beginning there was a lot of "why me" conversations with myself.  There was a pity party or two where the only person there was me.  I should have at least made myself a party hat!  Even though I have to wear a neck brace for five hours a day and can't jump on a horse and ride off into the sunset, I like to think I still sit on the positive side of things. 

Not that there is a whole lot of sitting going on around here.  I've got stuff to do!               




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