Chiari, Part V

Part 1
Part 2
Part 3
Part 4

In the beginning, he did very well. His headaches were gone. It was wonderful! All of his symptoms were gone. He healed very well, and the neurosurgeon cleared him for ALL activities with no restrictions.
Mom had other ideas! No tackle football, ever.
No crazy tricks on the bikes...no crazy stunts, period!
His first year checkup with the Neuro was great, and all was well.
Then one day, he came in from playing with his friends. Football, of course. He said another kid had accidentally crashed into him, and his head hurt really bad. He felt sick, and he just wanted to lay down. I was cooking dinner, and when I got a minute to check on him, he was fast asleep.
He slept all night long.
And then, some of the visual issues came back. He says it feels like his eyes are 'jumping'. Sometimes, he says, it's a little hard to swallow.
The time came for his next one year Neuro exam, and MRI. I told them about some of the symptoms coming back, although much milder than before. After looking at the MRI films, the neurosurgeon wasn't surprised.
The surgery hadn't been as successful as he'd originally thought.
It helped his problem greatly, obviously. But it wasn't the 'near cure' he thought it was. Some of the cerebellum was still protruding lower than it should be.
And there was a chance that, one day down the road, he'd need another surgery.
But, that was several years ago. His symptoms are very few and far between. He's been officially released by the neurosurgeon; instead of coming yearly for checkups, as of this year he only has to come in if symptoms are bothersome or new symptoms arise.
He takes it all in stride (better than I do, but I try not to let on). He's 15 years old now. He does everything any other 15 year old would do. Chiari doesn't affect mental ability, and he's still too smart for his own good, as he always has been.
The scar is barely visible now, mostly covered by his hair. It's just a memory, for the time being. I can only hope it remains that way.
The cause of Chiari I Malformation is unknown. It usually occurs in utero, and there are some theories of maternal drug use or improper diet causing Chiari. Since I know that I ate well and took my vitamins, have never done drugs and certainly didn't drink while pregnant....I don't worry about it too much. I was young (19 years old), but I wasn't dumb. I read all of the books and listened to my OB/GYN. I did everything I could to ensure my baby's health.
I will always wonder, but I let go of the guilt.
I know that people deal with so much worse, every day. And I feel for them, and I pray for them.
But that was, by far, the worst time in this Mother's life.

If you would like to make a donation to help fund a cure for Chiari Malformation & Syringomyelia, please click here: Conquer Chiari.


Soliloquy said...

I'm so glad this didn't have an unhappy ending!

How can humans be so fragile and yet so resilient at the same time? It amazes me.

God must have a pretty special plan for T-Bone. That's all I can say!

Ness said...

Thanks for sharing T-Bone's story. Prayers that he continues on without any additional problems or surgeries.

sogratefultobemormon.wordpress.com said...

hi C ~
glad for you and your family.

blessings, beany

Kel said...

Oh ... I'm so relieved it has a happy ending. You've had me worried for days - it sounds like he is an amazing little boy, he must take after his mother!

krissy said...

I am proud of you for posting such an emotional part of your life. You are a strong lady! I cannot wait until I can get to Florida and meet you. Considering I want to meet all my bloggy friends, I'm guessing I might have to sell a kidney and win the lottery.

But you are admirable.

Melissa said...

What a great story! I'm so glad it had a happy ending. Thank for your sharing with us and educating us on this issue. :)


Thank you all for reading & wishing him well!

Jane said...

Hi, found this through a google search. My son had his chiari surgery in 2005 ... always on a rollercoaster despite how well he seems to do. Nice to hear that your son is still hanging in. I wonder if a little 'settling' after the first year is normal ... same thing happened here, but not enough to bring about another surgery. Not fun to live with the questions, but glad for what we've had so far!