My mother recommended that I find a support group for information and also for a more personal experience with Chiari. Based on what I've seen so far, it looks like I found the right place. I have a story behind my Chiari and I'd like to share it. It's a tad long and may be hard to follow given my current condition.
Here's what you're dealing with:
My name is Kyle. I'm currently 22 and enrolled at the University of Cincinnati. I operate a small business with my parents and business could not be better. When I'm not working, I'm with my friends constantly. I can easily be labeled as the "extreme college student" in the partying sense. My life is intense everyday, and this Chiari thing has followed me for the past 5 years.
Here's what I dealt with:
It all started in my Junior year of high school, lifting class. There was a repetition competition that day and I was prepared to work hard. My goal was on the swinging leg press with 200lbs. I had two people in my group and I was the second person up. The first guy was a wrestler for the HS, pretty good if I had to say. He finished with 27 reps. I knew I could beat it, but I wanted to crush it. Once I hit rep 45, I started experiencing severe pain in the back of my neck. So naturally, I clenched harder and ignored it until I hit the nice even number of 50. During the strain, I screwed up my breathing pattern. Once I hit 50, I stopped and my body went completely limp. I was out for about 5 minutes. When I woke, all I remember was seeing a lot of blue. My spotters were asking me if I was alright, not even knowing I passed out. I said yes, climbed out of the machine and stumbled to the drinking fountain. No one knew anything, not even myself.
I decided to tell my mom a few days later. Being a nurse, she immediately scheduled me in for an MRI. I believe I went through about 5 neurologists. Some of them were confused since the flow study came back completely normal. Some told me that if I would have done one or two more reps, I would have cut the flow of cerebral fluids completely resulting in death. I then found Dr. Tew of the Mayfield Clinic whom diagnosed me with Chiari. I believe it was 4.5mm, not technically a Chiari. We did not look at surgery at the time. For three months I had headaches 24/7, some were extremely severe. I also experienced severe memory loss and the inability to solve simple math problems. The only relief I experienced was when I was drinking either blue or orange Gatorade, not Powerade. The headaches, memory issues, and math skills gradually came back over the next three years.
Here's what I'm dealing with:
The one thing that triggers my severe Chiari pains are shallow coughs. The coughs that happen when you don't have much air in your lungs, and the body strains to get it all out. These can send me into the fetal position with excruciating pain for up to 3 minutes. By far the worst pain I've ever felt in my life. After these "episodes" happen, I typically have headaches for the next 4-5 days. I've had three of these in the past 6 months, the last one being the worst. About 17 days ago I experienced one of these episodes again. I didn't think much of it until my symptoms started getting worse. Shoulder/back/neck pain, dizziness, vomiting, severe headaches, migraines, lowered cognitive thinking skills, fatigue, depression, shaking, and disorientation. I currently take zyrtec, a diuretic, Excedrin, and ibuprofen. I have an MRI w/ flow study scheduled for Monday and a follow-up on the following monday. My mom is pushing for surgery but I can't imagine laying in a bed for 4 weeks.
I'm open to questions. Otherwise, I hope you take something away from this story.
Kyle