I got to take the big, outer bandage off today. I still don't know what to expect underneath, but it is a start.
A story about my life living with Chiari Malformation Type 1, Syringomyelia, Seizures, and a slew of other problems. I'm not a professional but I believe we need to create more awareness about these conditions and all the others out there.
Tuesday, August 28, 2012
Thursday, August 16, 2012
Pre-Op MRI's showing Chiari Malformation and Syringomyelia.
Wednesday, August 15, 2012
This is my life
Welcome to my story! This road that I have been on has been a long one. I lived a normal life other than a few sprains from gymnastics and just being a kid. Then, when I was 11 years old, I broke my neck in gymnastics. I broke the hook of the C7 vertebrae in my neck completely off. I had to wear a neck brace for a few months and take it easy. As time went on, I starting feeling better. I was finally able to lose the brace and pretty much return to my normal life. I thought it was over. Then, when I was 15, the pain and muscle spasms started. The doctors blamed it on an old injury I had. I didn't think any differently so I went along with it. I then started experiencing migraines, which was also blamed on all the neck pain I had. I was given a couple of prescriptions and I went on with my life. I would have days that were so bad that I didn't want to do anything. That was not an option. As the years went on and the pain got worse, I went to doctor after doctor looking for answers. I kept getting blown or heard, "There is nothing wrong with you.". If they did listen, the answer was Ibuprophen and muscle relaxers. Nothing helped. It had gotten to the point where I felt like giving up. I kept going to doctor after doctor, taking whatever meds they thought would help, going to physical therapy, using heat and ice, and just anything that could possibly help. None of it worked. I dealt with this for 13 years!
About a year ago, I finally found a doctor that after all those years, ordered an MRI. It came back normal other than the old injury. I felt defeated. I felt as though no one would ever believe me and I would be this way forever. A few months later, I moved, which meant a new doctor. That was a total waste of time. She was more into her self than the care of the patients. I explained to her that every other doctor I had seen had always said there was nothing wrong with me. She had the gull to say that I must not have broken my neck then. I was furious! Needless to say, that was the first and only time I saw here. After dealing with finding a new doctor and my insurance company, I found someone who would listen. In the first visit with her, she listened, ordered a whole battery of tests including MRIs, and prescribed some medications to try to get my pain under control. She also immediately submitted referrals to pain management, a neurologist, and a neurosurgeon just in case. A few weeks later I had the MRIs done and got the results back. It showed that I had a syrinx the length of my spinal cord from the C3-C7 levels. Finally an answer. I was diagnosed with Syringomyelia on July 2, 2012.
It was finally time to see the neurologist for the first time. After reading over the reports, he was convinced that the syrinx was the problem and got me in quickly with the neurosurgeon. He made it seem like the syrinx was huge and I would probably be having surgery in the near future. He wanted to do a brain MRI to rule out the Chiari Malformation. Since the radiologists didn't find it, he was convinced that I didn't have that. I got the new MRI and it came back...NORMAL! The day came when I would see the surgeon. He came highly recommended and seemed like a great doctor. On August 1, 2012, within seconds of looking at the MRI images, I was diagnosed. There it was, plain as day but yet the radiologists report said there was nothing wrong. We immediately started talking about the surgery. We both agreed that it would be the best route to try to improve my symptoms. I scheduled my surgery and went home and thought about it all. Here all this time I thought I only had Syringomyelia but now I also have Chiari Malformation type 1. The reality was setting in that I would be having brain surgery.
About a year ago, I finally found a doctor that after all those years, ordered an MRI. It came back normal other than the old injury. I felt defeated. I felt as though no one would ever believe me and I would be this way forever. A few months later, I moved, which meant a new doctor. That was a total waste of time. She was more into her self than the care of the patients. I explained to her that every other doctor I had seen had always said there was nothing wrong with me. She had the gull to say that I must not have broken my neck then. I was furious! Needless to say, that was the first and only time I saw here. After dealing with finding a new doctor and my insurance company, I found someone who would listen. In the first visit with her, she listened, ordered a whole battery of tests including MRIs, and prescribed some medications to try to get my pain under control. She also immediately submitted referrals to pain management, a neurologist, and a neurosurgeon just in case. A few weeks later I had the MRIs done and got the results back. It showed that I had a syrinx the length of my spinal cord from the C3-C7 levels. Finally an answer. I was diagnosed with Syringomyelia on July 2, 2012.
It was finally time to see the neurologist for the first time. After reading over the reports, he was convinced that the syrinx was the problem and got me in quickly with the neurosurgeon. He made it seem like the syrinx was huge and I would probably be having surgery in the near future. He wanted to do a brain MRI to rule out the Chiari Malformation. Since the radiologists didn't find it, he was convinced that I didn't have that. I got the new MRI and it came back...NORMAL! The day came when I would see the surgeon. He came highly recommended and seemed like a great doctor. On August 1, 2012, within seconds of looking at the MRI images, I was diagnosed. There it was, plain as day but yet the radiologists report said there was nothing wrong. We immediately started talking about the surgery. We both agreed that it would be the best route to try to improve my symptoms. I scheduled my surgery and went home and thought about it all. Here all this time I thought I only had Syringomyelia but now I also have Chiari Malformation type 1. The reality was setting in that I would be having brain surgery.
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