Hi everyone! My name is Becky and I wanted to share my story..I am 22 years old and was diagnosed with Chiari Malformation type 1 on July 2015, right before my senior year of college. I have always been active playing sports since a young age and never had any health problems. I even sky dived and got scuba dive certified right before being diagnosed. However, I would always get very painful headaches when playing clarinet, laughing hard, coughing, etc.. but the time I got checked for it I was told it was migraines. I now learned its called valsalva maneuver and it was due to the Chiari. Last July, I decided to get a general physical exam because I was suddenly having double vision and balance problems. After a MRI, I was told that I had Chiari Malformation type 1. I was referred to a neurosurgeon and after she evaluated my results ( september), she told me i needed immediate surgery. At this point I had already started school and it meant i would have to drop the semester. I was terrified. She suggested to have more exams done to determine the urgency. Results came back and she suggested I could wait until December, right after school ended. December came and I had surgery. Probably the scariest moment in my life but with love, prayers and support I knew everything was going to be fine. Also, the medical team was AMAZING and made my time in the hospital better. It is moments like this were you come to realize how strong you are and the power of keeping a positive mind. I was discharged 5 days after. But..after one day at home, I started having intense headaches when standing and I felt my head pounding. My parents called the doctor and she said to take me immediately to the ER. As I arrived, they where ready for me and I underwent a CT scan and some other tests. Results came and the doctor notified us I needed immediate surgery because I had developed Hydrocephalus. I had a toast with cream cheese an hour before going so they had to wait until the next morning...I was admitted to ICU for the night and scheduled for surgery at 7:00 am. It was a rough night I still remember; I was really craving tacos now that i felt better but I couldn't eat anything. Also, they woke me up every hour and started prepping me around 4:00 am for surgery. I had a smooth surgery and had a shunt placed. I was discharged on Christmas day.I still had plans on starting my last semester of college on Jan 16 but my recovery time had been delayed due to the extra surgery. I felt way better this time though. Each day pain eased and I was healing correctly. Additionally, I was referred to a neuro-ophthalmologist because I still had nygstamus and double vision.
I started school two weeks late and with support, hope, faith, positivity and perseverance, I was able to graduate in May.
Its been a crazy year and today marks 6-months since my second surgery.
To be honest, all this changed my life. I was the type of person that had my life all planned out and I came to learn that God had another plan for me. I am still trying to figure out what that plan is but in the meantime, it has allowed me to realize that it is necessary to relax and not live your life all stressed out. It taught me that I am capable of achieving anything I set myself for and for the first time in my life, I have fully trusted my life to God. I still wonder why all this happened until now, it was so sudden and right before graduation. I was not able to apply to an internship or find jobs while in school because just focusing in my classes was exhausting. I’m trying to look at the bright side and think probably God wanted me to have a break, recover fully and calmly find my purpose in life.
I want to help others and let them know they are not alone in any battle. There is always someone praying and loving you.
It is the first time I tell my story on a support group and I hope I can help someone. If you would like to know more about my experience, let me know, I would gladly share.