Working With My Syrinx And Chiari, I’m Not Giving Up

I was your regular healthy guy who was active, sporty, living a normal happy life with my family and fiancée.   It never occurred to my mom or me that I got this abnormality up inside my head.  I didn’t feel anything strange growing up.  Not until the day when while on my way home from work, I felt dizzy that ends up like this throbbing pain in my head.

Source:  pixabay.com

 

Misdiagnosed As A Migraine

A headache can mean nothing serious or something serious.   It is a symptom caused by many factors from dehydration, hunger, stress, to brain injury.

My headache stayed for days to the point that it became unbearable.  I dropped by the Urgent Care Center nearby and had it checked.  The attending physician tried to relieve the discomfort I was into, did some tests and questioning, and ensure me that it was nothing serious.  He gave me pills that I could take, list of things I should avoid, and asked me to keep track of the headaches.   But at that moment, he suspected it was just some case of a simple migraine.

 

What In The World Are Chiari And Syrinx? 

While at work, I got this throbbing headache again, like I wanted to vomit.  Then, I started to feel numb all over.  My officemates immediately noticed the change in my color.   I told them I feel like passing out and I did.   That moment, they immediately called 911.

In the ER, they did an x-ray, CT scan, spinal tap, and MRI.  I could hear the attending doctor telling the nurse it could be a case of stroke.  I started to get worried.  Hours later, the doctor came and she told me, it’s Chiari 1 Malformation.

What was that again?

 

Was My Brain Too Big Or My Skull Too Small?

The doctor got this picture of a brain and showed me how part of my brain was pushing out through the opening at the base of my skull, putting pressure on my brain stem and the spinal cord.  This is what causes the headaches, numbness, nausea, and my recent passing out spell.

Source:  commons.wikimedia.org

 

And There’s More, Syringomyelia

With another run of MRI, they found syrinx or a cyst that is filled with fluid in my spinal cord.  The doctor said that it might get big, could cause damage to my spinal cord, and give me difficulty in my daily living in the long term.  Since it was caused by protrusion of my brain tissue, they recommend that I undergo surgery.

 

Doctors Split Up My Skull

My life drastically changed overnight.  There were things I was not allowed to do.  I could not go to the gym, do strenuous exercises, and have night outs.  I was asked to slow down a bit so as not to put more pressure on my spine.  It is not the life I’m used to, and it’s kind of depressing.

Source:  af.mil

After weeks of deep thinking, I told myself, why not give it a go.  I let the doctor open up my skull, remove part of its base to enlarge the opening.   The goal of the surgery is to reduce the pressure on my brain and spinal cord and allow the normal flow of the spinal fluid.  The doctors are also hoping that it would resolve or improve the status of my syringomyelia.

 

Surgery Didn’t Work

Surgery was not always a success, something went wrong that decompression failed, so it has to be redone at another hospital.  The doctors succeeded this second time.  But with further monitoring, the surgery was unable to restore the normal flow of the cerebrospinal fluid, so the syrinx is still there.

It’s been months since my surgery.   The recovery is very slow, but the symptoms are improving.  I’m determined to get my life back, so I won’t give up on hoping even if it would mean another surgery.

 

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