Chiari, Part II

Part I

We took him for the MRI in January. Then we waited for a phone call. When it came, although I was expecting this news, it was still devastating.
He did have a Chiari I Malformation and it had caused a syrinx. We were being referred to a Neurosurgeon.
I remember calling the kids' dad and telling him he needed to come home right away. And I remember a lot of crying and praying. But at some point, a sense of peace came over me. Deep down, I felt that everything was going to be ok. I knew it would be a hard time, but I felt that in the end, T-bone would do fine.
During the wait for the Neurosurgeon appointment, things only got worse for T-bone. The headaches became more frequent, and much worse for him. He got nauseous or vomited more frequently because of the headaches. I took Tylenol to the school clinic for him, because the headaches were causing him problems at school. He was just miserable.
When we saw the Neurosurgeon, he explained Chiari Malformation to us. Then he explained the decompression surgery used to treat Chiari.
Then he told us that although he did recommend the surgery, the ultimate decision was up to us, his parents.
That was tough. I would've preferred to hear, "he needs this surgery, he needs it now, sign here". It's not that I wanted all of the decisions for my child made by someone else, but to choose whether or not your child has brain surgery is a very difficult thing to do.
So, we left the surgeon's office and told him we'd let him know our decision. We talked about it all the way home, and were leaning towards doing the surgery. We knew that his quality of life was being greatly affected by this illness, and he was only 8 years old. He should've been an active, fun-loving kid, but he was being held back by being sick.
That day, for the first time, he had two of these debilitating headaches in one day.
I called the Neurosurgeon's office and asked them to schedule the surgery.
We knew we couldn't let him go on like that.

to be continued...
Part III


Melissa said...

Wow. What a story. And very educational. Thank your for sharing this.

Queen of the Mayhem said...

I can't even imagine how difficult that must have been for you.

I feel certain I would have done the same thing!

Can't wait to read part 2!

Ness said...

I can't imagine how overwhelmed you felt both with watching your child suffer and having to make decisions for surgery. I think you handled it so well. I'm anxious to read more.

Kel said...

I wouldn't want to have to make that decision, but faced with what you faced i would have made the same choice.

Your a stong woman!

A Buns Life said...

Very scary and a hard decision to make in such a stressful time...

Kathryn said...

I think he had two headaches that day for a reason, don't you? I think it helped you decide.

Tammie said...

i cant wait for the next part of this.

I totally appreciate how you mention that even though this was an awful, hard thing to go through, a "sense of peace came over" you. i have found this to be the case with me as well. sometimes, when its obvious that something very bad is going to happen in my life, i stress and worry and cry almost to the point of making myself sick. but when it finally happens, i realize i have the strength to get through it somehow. im always amazed at how strong i can really be.

Sue said...

... [speachless]


melissa said...

having children is scary...
poor guy. poor mommy!!

sogratefultobemormon.wordpress.com said...

hi cyndy ~
how peaceful that you felt that sense of peace, sense of calm.

i don't know about this kind of medical situation but i do know about feeling that sense of peace (blessing) when the adversity at hand is so tough. when our teen daughters ran away and were missing last summer for a month, much of that time, even though it really made no sense, ... i felt that sense of peace/calm also that everything somehow someway would work out.

blessings, beany

Immoral Matriarch said...

wow. I don't even know what to say...


Kathryn- I totally think the same thing.
Tammie- that feeling of peace has come over me at a few very difficult times in life. It's such a relief.
Thanks, all!

OHmommy said...

Poor mommy. I can't even imagine how hard it must have been. Need to read part 2 soon.

krissy said...

I could feel your pain especially when you were praying that it wasn't a inoperable brain tumor because that is what I would have been praying for too.

My sweet nephew has spina bifida. You wouldn't know it by looking at him because the miracle kid walks, but he has a shunt. So, I know what the surgery is like.

And I also think your post about the closest families is so true. We have fun, and we make life fun, and my daughter tells me everything so far. Good posts.