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One Year of Chiari Malformation (Posted 3/28/17)

I cannot believe it has already been an entire year! I have been staring at this blank screen all day long, not knowing where to begin because so much has changed since this day a year ago sitting at Swedish Cherry Hill.


I did some counting looking back at this year and here are some stats I have come up with:

Surgeries: 3

Days at the hospital: 9

MRIs: 5, about to be 6

Massage Therapy appts: 19

Physical Therapy appts: 64

Before my diagnosis, I had never had an MRI before let alone a surgery or hospital stay. It was crazy how things flipped around so so quickly.


On that rainy Monday in 2016, I had no idea how much this diagnosis and surgery(ies) would change my life. I didn't even realize that Chiari was a chronic condition until I became one of the 20% of people who don't get better/becomes worse after surgery. I remember my mom just dropping me off back at my dorm after a full day of meeting 3 different specialist and getting 7 viles of blood drawn and just carrying on with my day, going to Terpsichore Landing showings that night and still dancing, even though my vision would go black. I was optimistic and I persevered through the rest of my semester to finish and went straight into surgery after finals week. The pain was unbearable, and I thought it would never end.


After my first surgery, I actually did get better. I felt good and went back to school just 4 months post op. I was strong, but got worse very quickly. I tried to push through it because I thought it was "all in my head," but MRIs showed it actually was. "We have to keep watching to see if the syrinx goes away," they said. It didn't. It grew. All the way down my spinal cord. There I am, less than a year since being diagnosed, under the knife once again having a surgery done that hasn't been done in 10-15 years. They said I was that bad. I believe it.


That surgery combined with the rhizotomy procedure (nerve burning for pain control), I am feeling relief. I still have an abundance of symptoms that aren't really "symptoms." My doctor says that some of the neurological problems should get better within the next 6 weeks, but that depending what my MRI shows, that might be my new normal. That is my reality.


Even though this year has been an INSANE rollercoaster and so much has changed, I have learned so much about myself. I never knew how much persistence I held within me, and that has made me strong. I will never ever ever take my health for granted ever again, because all I want to do is have as much energy as I used to, not needing to worry about midday naps and resting times. One of my favorite mantras that I have always strived to live by is to enjoy the little things, the simple life, and if being diagnosed with a chronic illness doesn't force you down that route, I don't know what would. The quest for a cure continues, and as long as I live, Chiari awareness will NEVER stop. The Chiari community is very small, but very powerful. Here's to many more years ahead continuing to fight this battle. #conquerchiari

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