What a journey, but so far so good!

Tomorrow will be 6 weeks post op for me! This has been one crazy journey. I have been through this before with my sister, but that was over 12 years ago and I was only 9 at the time. I never expected this to happen to me. When I first started getting sick like my sister, I was so afraid that I would need surgery. But I had MRI's and they always came back clear. It wasn't until last November that I was told I had a borderline Chiari Malformation. I was starting to get scared, how come they have never seen this before? My doctor said we will continue to monitor it and see if there are any changes. But a few months later I was in a car accident. It was the day before I was leaving for a family vacation to Disney World and I was coming home from my sisters house and was hit on my passenger side by a truck. The weeks after that I started getting bad pressure headaches and it took so much effort to hold my head and neck up. I was feeling miserable. So my doctor sent me for another MRI and the Chiari Malformation had gone from 5cm to 8cm. He gave me the name of a surgeon he has referred other patients to and I made an appointment right away. I saw Dr. George Jallo at Johns Hopkins, he is a pediatric surgeon. The appointment went well and after my exam he showed my my MRI and pointed everything out to me. In the end he said it was my decision, he highly recommended that we take care of this right away, before it gets worse. So I talked it over with my mom and called his office the next day to set up my surgery. It just felt so crazy thinking I was going to have brain surgery. Was I really that bad off that I needed it? I started to feel guilty, then nervous, then a few days before my surgery I started to feel ok with it. I think having my family and friends support me helped out A LOT!!! They kept me calm, especially my mom! Everything was happening so fast, it didn't feel real. The day of the surgery came and we were at the hospital 6 in the morning. The next thing I knew I was taking a nap in the operating room and waking up in the ICU. When I woke up I remember shaking so bad from being so cold, then the pain kicked in. They didn't have the morphine pump ready yet, but once they did I felt great. I slept most of the day and once the evening came around I started to feel hungry. All I could eat was ice chips. The next morning they moved me to my own room. Since my surgeon was pediatric, they put me on a pediatric floor. I wasn't even settled into my room and the physical therapist was there and ready to get me out of bed. That helped a lot, I was so happy to be able to walk and move around. It was great, my mom stayed with me the entire time, and they had a place for her to shower, a room to play games, computers and a snack room. The next 3 days went by pretty quickly. I wasn't in much pain at all, just uncomfortable and had a few minor headaches from the clamps they used to hold my head in place during surgery. I couldn't wait to get home and finally shower! My surgeon used absorb-able stitches so I was able to wash my hair. They felt so weird and I think knowing they were in made me feel even more stiff. I never had major surgery before and was so nervous about everything that I did. I am thankful that my mom kept me moving. She made sure I did my neck exercises and that we would go for a walk in the neighborhood. As the weeks went by things kept getting better and I am so happy to say that tomorrow I will be 6 weeks post-op!! Yippee!!!! I know I am not completely better, but I am getting there. The most annoying thing now is that to the right of my incision, it is numb. The surgeon said that it is completely normal and the feeling should come back. But it is so hard to get comfortable at night time. I am just blessed to be doing so well! And I am so glad that I found this site! I read others discussions and that helped me get through this and I want to be able to help others! It is scary, but knowing others are going through the same thing helps out so much!!!


Thank you so much for sharing your story with us...I am happy you are recovering so well.....Also great to hear you have such a super mom, family and friends.



That is great to hear! Glad you are doing so well and have such great support!!!