As some of you may know, I was diagnosed in October of 2011 with Chiari Malformation Type I. I figured I would blog a little about what it is, how it has affected us, and what the ultimate treatment will be.
For starters, Chiari Malformation is most often a birth defect, but can also be due to a trauma or sever case of whiplash. Most often it shows up in the ages of 20-50, and 90% of the time, it is found quite by accident. Chiari sufferers usually go years and years without a proper diagnoses, and that is due to how little is actually known about the disease. Roughly 1 in 10,000 people are estimated to suffer from this disorder, and although it hasn't been officially labeled as hereditary, it does usually run along family lines. My father was diagnosed in his early 40's, had the surgery to fix it, and did very well afterwards.
So what is it? Basically, there is a deformation in the back of the skull, called the foramen magnum, and this causes overcrowding of the cerebellum, cause that part of the brain to be pushed down out of the skull, compressing the spinal chord. Symptoms range from sever headaches, neck pain, sever dizziness, numbness and tingling in the extremities, problems with balance, swallowing problems, ringing in the ears, and even fainting spells. The surgery to correct this problem involves removing a small portion of the skull and the dura, and possibly removing the arch of the first two vertebrae. This makes more room for the brain, and restores normal fluid flow around the brain. This is caused a decompression surgery. The surgery is about 4 hours long, and requires about a 5 day hospital stay, but often times require a 4 to 6 month recovery period. ( My father did extremely well with his surgery, and went back to work 3 months to the day of his surgery.)
Where am I at in all this? Waiting. The neurosurgeons I have seen wanted to rule out any other possible causes for the symptoms I am having, which are severe, crippling headaches, chronic vertigo, constant ringing in my ears, and I have had several blackouts. Most everything else is ruled out, and I have had more MRI's, CT scans, and other tests than I can count. My neurologist is fantastic, and is working very hard to help me manage the symptoms, and now we wait for the neurosurgeons to ok the surgery. (Hopefully soon, my work schedule has been severely effected, and so has our financial situation.) This has taken a toll on my wife and my kids in an awful way. Between managing my symptoms, doctors appointments, and now I can't drive, this has forced them all to pick up the slack in various ways. Emotionally, I am not the same person I was, and both my wife and my kids have commented on that. Sometimes we laugh and make jokes about it, sometimes we cry about it. Most times, we take it for what it is. We have found support in many places, our amazing church family, my grandmother Barb, who is always worrying about me, (stop worrying, we're getting through!!!), my in-laws who have taken the kids whenever we've needed, and even some of my co-workers have donated some time, covered some shifts, and have been overall patient with the limitations this has caused.
Learning things about myself? Absolutely. Learning things about my wife and kids? most definitely. Frustrated and at times, ready to give up? Yes. But we're dealing with it.
Hopefully this brings some understanding to some, and some tolerance and support for others. Since I don't often look sick, it is hard for many people to understand. I have been dealing with this for four years and counting now, and have been told its was everything from depression, migraines, a pinched nerve, stress, grief, even a testosterone deficiency!!!
The best way to explain it is from another blog I read, (http://chiari-life.blogspot.com/), and goes like this:
"The first thing that comes to my mind is "But you don't look sick!?" Yeah, we get that alot. Chiari Malformation is considered an invisible illness because you don't usually see the symptoms on the outside.
Of course I look normal.
You can't see the pressure in my head.
You can't see that it feels like my head could explode at any minute.
You can't see that my hands and feet are numb and tingling.
I may stumble or walk into something, but I just look clumsy to you...You don't see my balance and depth perception problems.
You don't hear the ringing in my ears.
You hear my speech slurr or I trip over my words. You laugh, I laugh. But do you know why it happens? Does that come to mind when you hear it?
You don't see me almost black out from getting dizzy and lightheaded if I drive too fast over a hill.
(I know why I can't ride rollercoasters.)
I could continue to go on and on with the list.
I have tried looking at things from the opposite point of view. The other person can never fully understand what you are going through. They may try to relate by sympathizing with you over something they have gone through. "I've had surgery once. I went in to get my tonsils taken out"
Oh ok...not quite on the same plane as brain surgery. "So you're cured now that you've had surgery right?" No surgery is not a cure, just a form of treatment. "Oh."
People do not understand why surgery if its not a cure. What is the point of surgery?
When I first had major problems I went back to my family doctor a few times for "migraines". Each time I was given a different medicine or something to try. Finally he ordered an MRI after I went in and couldn't turn my head at all. I was lucky enough to be referred to a NS who knew of Chiari and wasn't afraid to work with it. He has followed up ever since. I was diagnosed in 2003.
A lot of people go through several doctors, neurosurgeons, neurologists, and other specialists before they are diagnosed.
After diagnosis its a mixed feeling. You're relieved because you finally have an answer for what you're going through. But on the other hand....what do you do with it?
You barely understand it, how will anyone else? So you begin to tell your family and then your closest friends. Again...they don't really experience what you're going through. They know what you're saying. They don't feel the pain. It's hard to sympathize with the unknown."