I like Minecraft and Call of Duty. I achieved green belt in Karate. I received an Honorary Black Belt. I play the drums. I'm the oldest kid in my family of six. And oh yeah, I have Chiari Malformation; my brain is not fitting where it should.
I'm Kyle. I was born with Klippel Feil syndrome and diagnosed with Chiari Malformation in Sept. 2011. I had my first decompression surgery in Nov. 2011. This blog is about me living with both, and my surgeries.
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Kyle fell yesterday and couldn't get back up on his own. I can tell it upset him badly. Later yesterday he couldn't even pick up his android tablet. Today, I took him to get his pictures taken at a portrait studio. He was weak and tired but did the session anyway. As I was reviewing the pics I looked over at him sitting in a wheel chair and he literally looked like he was going to pass out. He said his stomach hurt. Instant fear came over me as if I'm going to lose him. He has two more weeks before his surgery. I pray we can wait that long.
I got fitted for my halo today. Actually the technician just took measurements of my head and chest. I ask if it comes in different colors. He said no. Too bad beings I have to wear it for 6 months. I wanted it to be red. I also found out I will not be able to take showers. :(
I'm Kyle's mom. I've noticed Kyle has good days and bad days, but regardless, he is getting weaker by the day. Kyle is experiencing neuromuscular deficits because the flow of his spinal fluid is getting blocked. Some of his issues are weakness of arms, hands, legs and feet. He is having more difficulty with balance and coordination. He also has major swallowing difficulties. Watching him go through these issues is heart-breaking. I'm trying to prevent him from exhausting himself because I don't know if he will decline more or not if he does too much. I also don't know if he will get strong again after his surgery. I pray he does.
Klippel Feil syndrome is a rare birth defect that affects the spine. The doctors told my parents Klippel Feil is not genetic. There can be several symptoms associated with Klippel Feil but the most noticeable one is a short neck. I have a short neck with fusion in some of my neck vertebraes, and I was born with a single kidney. My parents told me they had a MRI done on me when I was 9 or 10 months old but they were told my brain was fine. I'm curious why they didn't notice my Chiari then.
I found this site that describes the halo traction. I don't want to think about it. The thing gets screwed into my head and weights are added to it. I'm told I will be kept somewhat sleepy for the week that I am in this thing.
I don't know if everyone who goes through decompression surgery has to have this but I think I do because I have Klippel Feil.
So, I've been told my first surgery is set for Nov. 8th. My second surgery is set for Nov. 16th. My first surgery is the decompression surgery. Basically the neurosurgeons are going to remove a piece of my skull and some vertebrae pieces then add a graft (cow's heart lining) to open up the space that is blocking my spinal fluid to flow correctly. Then I'm told I will be in ICU for a week stuck in a halo traction thing that they add weights to in order to pull and straighten my spine before they do the next surgery. The second surgery is the fixation surgery where they will add metal rods or something like that to fuse my neck vertebraes.
The whole time I was listening to the doctor explain this to my parents and me I was thinking, "what the....?" Grrr.
At first I didn't know what was wrong with me and I didn't know how to explain to my parents what or how I was feeling. Which was: I was tired a lot; I wanted to lay down all the time; I had headaches; I had dizzy spells. Then I started not using my right arm and hand. I got weaker in Karate. Then I started falling/dropping for no reason. And because I couldn't explain it and my parents didn't know what was wrong they did a lot of guessing.
They would ask me: "Why are you being lazy?" "You are not eating right, you need more vitamins and fish oil." "You need more sleep." "Try harder." "Use your right arm."
Of course, nothing changed.
I also have Klippel Feil, I was born with a single kidney. So my parents insisted something was wrong with my kidney. But nothing showed up too abnormal. So my parents started worrying that maybe my symptoms meant I had MS or Parkinson disease. They kept taking me to my doctor to find out what is going on.
Finally, nearly a year after my parents started getting concerned with thinking something was seriously wrong with me, my doctor ordered a MRI scan. The scan took 2 long, uncomfortable hours. The next day, my doctor called my parents and told them that a neurologist will be contacting them and that I should not be doing any physical activities.
We met a neurosurgeon about three weeks ago. And that is when they told my parents I have Chiari malformation.
Hello. I'm Kyle. I started experiencing changes about 2 years ago. Not knowing what was wrong with me until recently. A MRI scan showed I have Chiari Malformation. This blog serves as a journal of my experiences with Chiari. I plan on updating this blog before and after my surgeries. My parents will help me blog when I cannot.