Been bottled up too long!

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Well here goes nothing, I suffer from Chiari malformation. I had decompression surgery February 2006, everything went well until January 2009 I started getting lost coming from work. My condition deteriorated to the point I was admitted into traumatic brain injury hospital, I spent the next 11 months institutionalized. Finally they found the problem I had CSF causing pressure on my brain, I soon after had a VP shunt installed. As soon as I woke up from surgery, I knew that I was better.like all brain injuries it's been really frustrating, I was an athlete in college like to consider myself pretty coordinated. I lost the use of my left hand and was confined to a wheelchair, but I have since regained the use of my hand and my mobility.
I have been out of the hospital two years this month, and I've never talked about it with anyone. I was married for 15 years, and have three children. When I was at my worst in the hospital, I was sent divorce papers. Six months later they found the problem and I was fixed. I still go to therapy twice a week for fine motor skills my left hand, but I have no complaints. My 14 year-old little girl lives with me, and I get my boys every weekend. I guess you could say I'm still getting accustomed to the new life.
One of the hardest things for me was feeling tired everyday even after 9 to 10 hours sleep. I'm assuming the first year my brain was still healing so I needed more sleep than usual. I still can't sleep through the night, I wake up three or four times. I guess this is normal with brain injuries. I guess I'm at the point now where I get frustrated during rehabilitation, or I will go to reach for something in my left hand doesn't work just quite right. Or if I am holding something in my left hand and it suddenly falls.I am getting new sensation back, ofcourse the first one is pain I could do without that one. Something neat happen the other day I could feel the wind blowing on my hand, after all of been through it's the little things that matter LOL.
I'm blessed to be a part of my kids lives again, and I find all my free time at their activities. My daughter plays volleyball year-round, my nine-year-old plays year-round baseball and basketball, my seven-year-old plays baseball. After being in the hospital for year and missing all the time with them, I find that if I don't spend all the time I can now with them I am missing out on something. Still pretty bitter about my divorce, although I do have joint custody of my kids it's just not the same. I would like us all to be under one roof, but that's just not going to happen.
When I get down, just remember a lot of the people that was in the hospital with and what they're going through. And how fortunate I am to have made such a remarkable recovery, now having said that it's still is very hard. When I'm having a bad day, I have to rewind a little bit and remember where I came from and what I've been through. I can't say I'm a real religious person, but I do believe God doesn't give us more than what we can handle. And I know there must be some purpose for all of this, I believe your character is determined by the obstacles in your life and how you overcome them. Even the strongest of person will stumble, you just have to have the strength to get up and stay on course. I used to be angry about what happened, but now I see it as a blessing. I'm a much better man today for what I've gone through. So if you're reading this and you two are having a bad day, know this it will pass. You have to find that thing inside that motivates you, whether it's a loved one, a friend,or even a goal and never forget it. What motivates me today are my children, just because I don't have a significant other in my life doesn't mean you shouldn't do your best each day. My children are at the age now, that if I took a turn for the worse and left here tomorrow, that they knew their dad did everything he could with the second chance at life. And no matter what happens to you, you have a choice. My choices to keep fighting, and live trying to set a good example for my little ones. Thanks for listening, never stop fighting and participating in your recovery.

Steve

 
By Tonrrs on Tue, 02-21-12, 21:47

I'd love your message! I lived with Chiari from 2005 to 2008. I had three surgeries, so I know how frustrating it can be living with side effects, knowing doctor's have no clue ppl whom suffers with this illness on a day 2 day basics physically& mentally! "I pray to look @ life the way u do:-D The pain is getting the best of me, but God is carrying me through! Thx

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By razzle51 on Tue, 03-20-12, 08:58

I have had chiari and sm for over 12 yrs . Keep fighting

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