Syringomyelia

Syringomyelia - It's a funny word. 

I have it.

I'll try to explain this simply as I tend to get bogged down in the science of it all...  Your spinal cord is like a noodle.  It floats free inside your spinal column, from your brain all the way to your tail ;)  Fluid from the brain (CSF or Cerebral Spinal Fluid) should flow around the noodle in the column.  Sometimes though, for whatever reason, the CSF gets blocked and needs a new way to travel and decides to find a hole inside the noodle and travel through that way.  Which causes a problem.

Your spinal cord isn't supposed to have fluid inside.   These beautiful little cavities of fluid are called a syrinx.  Beautiful etymology for that word - from the Greek myth.  A beautiful woman, name Syrinx, was relentlessly chased by Pan to the river's edge where she begged the nymphs to help her.  The nymphs then turned her into a hollow reed which made beautiful music when the wind blew over it (also the basis for pan's pipes).  I have 3 of these syrinxes.  I originally called the first one "my little friend" now I call them "my fan club".

Most people have a reason for their Syrinxes - either a condition called an Arnold Chiari Malformation (ACM) or from previous trauma (ie spinal cord injury).  An ACM is where the brain (specifically the tonsils) has herniated into the spinal column which then causes the CSF to be blocked.  A spinal cord injury works the same way where scar tissue (arachnoditis) blocks the CSF.

I have niether - my Syrinxes are considered idiopathic (no reason for existing) which I almost think means "too lazy doctor".  My neurosurgeon says I was probably born with it.  This isn't good news as there are treatments for both of those conditions which ultimately can lead to the syrinxes clearing up on their own - but not for idiopathics.

I'm a lucky one.  Yup, lucky,  See a Syrinx can develop in the center of the cord like this:
 ( o )
 or on the side like this:
  (o )  
Mine is in the center - which means there is plenty of room before it actually touches the nerve endings.  Eventually, it could grow large enough to "choke out" my spinal cord and sever it or affect the nerve endings just by touching them.  If it were the kind that grows touching the side, I would probably have had symptoms from the onset.  Currently, I have no life threatening symptoms. 

Syrinxes can grow - they can grow longer (down the noodle) or wider.  I am  a little unusual because I have 3 that are not connected (yet).  As long as mine don't grow wider I should keep a status quo.  Here is the catch 22 - Syrinxes affect the body's ability to control blood pressure - yet blood pressure (most specialists agree) cause a "warhammer affect" which can make the syrinx grow.

Ah, and the best <insert sarcasm here> thing about having a syrinx?  No vasalvic movements.  You know when you strain and kinda hold your breath - child birth, having a bm, opening a jar of pickles, lifting just about anything?  Those are all vasalvic movements.  Additionally, sneezing, hiccuping, coughing.  These are all things I'm NOT supposed to do because it is thought that they can make syrinxes grow.  Have you ever tried to have a BM without pushing at all?   At my age - there aren't enough bran flakes in the world to make it possible.

So what does all this mean?  I take things day by day.  The life expectancy isn't incredibly good.  And as symptoms progress, I could face lung failure or paralysis.  The only surgery that is possible is highly dangerous in itself - because they have to actually open up the spinal cord.  Not something I would like to have to go through.  I do have an awesome neurosurgeon, who I trust completely.

Day by day is all I can do - because life is short.