Chiari Online Support Group

My Story


#1

Chiari Story

In 2010, for my 30th birthday I learned that I had Chiari Malformation. It was an unexpected birthday present that I was so happy to get. Most people might feel like having Chiari is a curse but not for me. I finally had a name to what I have been going through all my life.

My journey into life starts with a birth in a car, a Ford Fairmont on the streets of San Francisco. When I made an early arrival into this world, we were still 10 minutes away from the hospital. When we finally arrived at the ER, they were actually able get the cord, still in the car and I was then whisked away to ICU.

Whilst at the hospital, I had all the traits of a preemie baby, but was in fact “two weeks” late. I was whoppin 5 pounds and I could fit in the palm of your hand. I spent many weeks in the ICU, they had detected a heart mummer and was fighting for my life. My mom noted, she thought something else was wrong when she looked at my head, She told the Doctor, “…it looks like her head is misshapen...?” Back in the 1980’s checking for Chiari, wasn’t even on the radar – I wonder if it is looked for today? My first year I had all the classic symptoms: fussiness when being fed, crying more then the usual baby, trouble gaining weight, and developmental delays. The doctor’s just told my mom that “she will grow out of it or due to the nature of my birth she was just angry from all the trauma”.

As I got older, things didn’t improve, in fact, it got worse. My childhood was not a typical childhood. I had horrible issues with loud noises, sensory issues, tremors, difficulty speaking (years of speech therapy), ADHD, learning disability and vomiting. They used to find me head banging or find me with blankets over my head rocking saying “…It hurts, It hurts…” I always would throw a fit when I had to put my hair in a ponytail, headbands, or in bun. I can remember the pounding my head would feel when I would have my hair up or the pressure of the headband behind my ears. I have always had a ringing in my ears or the sound of swishing in my ears. I thought that was totally normal. I once held a seashell to my ear to hear what the ocean sounded like and remember thinking “I hear that all the time”. Chiari mimics so many symptoms that the doctors would tell me it was just something else or they would have no answers. My blood work would always come back in range, so they were unsure what was going on with me.

By the time I was a teenager I got used to a lot of the symptoms, like body shakes, the noises/ringing in my ears and head. Visually, I’ve always so halos around lights as another example. I was basically was just living with these issues in hope that one day that I might know what was going on. I made a lot of adjustments to my life; I would always stay away from loud situations, learning to live with headaches everyday, stopped having my hair up, etc., after a while all of this became normal. In High School they always made adjustments to my learning style with no time requirement for tests, I never had to use those scan-tron sheets for tests, didn’t have to take a foreign language, or PE. Through High School I always felt different but just learning to deal with my health. It was totally normal for me, this was all I knew, as well as my body.

Through my 20’s my life was just normal for me with all these issues: Neck/ Back pain was painful, but normal for most of us, my head always hurting, having perception issues, always being cold, the extreme thirst/ feeling of dehydration, vision issues, body numbness, ringing in my ears, halos over lights, dry skin/hair, and sound sensitivity. However, I always kept hope that one day things would get better but if not, I was used to this life, as it’s the only one I’ll ever know.

Right around my 30th birthday I went to see neurologist to help me with the tremors I was having. I have had them all my life but for me they were getting worse. They sent me over to get a MRI to see what was going on. The Doctors wanted to see if the loss of a far amount of oxygen during birth may be a cause and they wanted some kind of a baseline. The doctor told me that he would call me when they got the results from the radiologist.

I was shopping at Target when I go the phone call... I ran outside so I could hear him clearly – results I’ve been waiting a long time for! The doctor then went on to tell me I had “Chiari Malformation” at 12mm. I remember asking him to spell it because I had no idea what the heck it was. He told me to go home to Google and with that basically told me “good luck”. When I got home that night I looked up everything about it. For the first time in my life I felt like I was not crazy and it was such an unexpected gifted to finally, after 30 years of living with the myriad of issues – to finally know, know what I have been dealing with and it’s name!

I’ve now committed myself to helping drive awareness and supporting the various communities and global and local groups. I’ve also started researching potentially helpful, natural medications with the help of some very bright people in the medical field. The days of doctors saying “well, good luck with that” need to stop. There are too many of us suffering and countless others undiagnosed (like myself, until age 30).

I just wanted to take a moment and tell everyone a brief background of my life with Chiari. It is a pleasure to have meet so many of you and look forward to meeting everyone.

Warmest,

Amanda