Meet Chiari Warrior – Sarah

I have always been very open about my journey with Chiari Malformation.  Over 2 years ago, I didn't even have the word chiari in my vocabulary.  But, today, it is there and it is a word I think of on a daily basis.  I don't think a day goes by where I don't utter the word...chiari.  

As I look back on my childhood, I see where chiari was hindering me.  Holding me back.  But, it wasn't until my early 20's, that I really started feeling the symptoms associated with this disease.  At first, I would complain about how I felt to my doctor.  I was told I had depression, anxiety, poor posture, PMS, PMDD...the list goes on.  I gave up in my mid 20's.  I was a parent.  I was going to college.  I was working.  Life was, genuinely, busy.

As I hit my 30's, my headaches became worse.  My body hurt more.  My fatigue grew stronger.  I just attributed it to stress.  Plus, I never like to complain.  But, when I was 36...enough was enough.  I finally complained about a particular symptom.  Pressure headaches.  Anytime I coughed or laughed, my head would throb for 20 seconds.  It became unbearable when I had a cold.  The pain would drop me to my knees.

After obtaining an MRI, it was discovered that my brain was herniated 15mm below the base of my skull.  It was obvious I needed help...and through much research, it was even more obvious that help wasn't coming from Maine.  I found an AMAZING chiari specialist, Dr. Bolognese, on Long Island in New York.  It was through him, that I discovered I had much more than just chiari malformation.  I also have Ehler's Danlos Syndrome, cranio-cervical instability & tethered cord syndrome.

In February 2016, I went through a 10 1/2 hour surgery where the herniated portion of my brain was removed.   Also, to correct the cranio-cervical instability, I had my neck fused from C0-C2.

Chiari has continued to rob me.  I struggle daily to keep a smile and move forward.  To stay productive.  However, most of my time is in my bed...in agony.  My tethered cord has progressively gotten worse.  It gives me the sensation of acid running down my legs.  My feet feel like they are on fire.  I feel like bugs are constantly crawling on me.  To walk, I have to think 'left, right, left, right' as my legs feel like they each weigh a ton.

To add to the tethered cord pain, a year ago, I started having daily headaches (which I thought were just a chiari thing) and a terrible pain/pressure behind my eyes.  It feels like my eyeballs are going to blow out of my head.  I found out, from Dr. Bolognese, that I now have intracranial venous stenosis.  So, the blood flow in my brain is compromised.  I need to have a stent placed to correct this issue.

October 25th, I will have surgery on my tethered cord and will unfortunately have to be out of work for 2 months.  I will return after Christmas.  I hope I will be feeling better.  I understand there is no cure for chiari and its friends.  However, I hope to regain some form of control and quality of life.

Sharing my journey  has made it easier for me.  I have learned that I am not alone in this.  More and more chiari warrior's are coming forward to share their stories.  I'm glad my battle can bring awareness to a state that has little knowledge of such a debilitating disease.