12.15.2007

Science 101

I totally feel like I have gone back to Anatomy Physiology 100, and am now majoring in Neuro sciences.

I have been racking my brain with all the info on Chiari that I can get. Prior to symptoms, I did a bit of research...enough to know what Chiari Malformation type 1 is, and that's the extent of it.
Last Friday I took Riley in for her PRE OP - MRI physical. I guess when you have to go under general anesthesia, they make sure you are OK. I only went through that with Carson and Cooper for surgery.....Did not know it was the same for and MRI. Anyhow, things are good and she is ready to go. She was 42 in and 42 lbs. Kinda funny.

So, I have made the mistake of telling Riley that she is going in for an MRI on Friday. It just kinda of slipped when we went in for the physical. Now, I have totally scared the pants off the girl, and she's asking a bazillion question. Always, the first question is, " Do I have to get a shot?"
It breaks my heart because I know she's getting a lot more than just a shot. To keep things some what calm, I have been telling her no, in hopes that she won't freak so much.

We are trying to get Riley a CINE MRI , in hopes of killing 2 birds with one stone. We are waiting on approval from our NS.

I joined an online support group The World ACM Association Support Group ,and I have been getting a lot of my questions answered. A LOT of people that I have chatted with that have children with Chiari have almost all had surgery with in months of symptoms. AND, almost every child has had the symptoms that Riley is showing. In a way, it freaks me out that this is becoming so real, but after her diagnoses, it was all just a matter of time.
I have also found out, that children who have the decompression surgery, have a much better outcome than adults. So, part of me says, "good, let's get this bad boy fixed", and the other part says, " I am not ready for another child to go under such a massive surgery." I guess we'll have to wait and see what Friday brings.

The Good part about all of this is we won't have to travel. We got the MRI scheduled right here at one of our local hospitals. Because it is here in town, the orders went through our pediatrician. She's such a smart cookie! That means, she will get the report hopefully that same day, and we should have answers either that day, or Monday. YIPPEE! I love ya Annika! The last thing I need to do is stress about knowing the results over Christmas!

So meanwhile, I will sit, stare at my computer, eat crap, gain some weight, and be merry!

Here is a picture of Chiari,




Decompression surgery with pieces of bone (skull) removed,







and a picture of the Chiari "Zipper". Chiarian's call themselves "Zipper heads".

4 comments:

Michelle said...

Oh that is just wonderful that you can get the results so quickly!! I absolutely believe the waiting is what would drive someone insane.

I hope if you need anything, I can help you out.

(And I totally feel like I should've paid more attention in Science class, don't you?)

nailgirl said...

I am so so sorry Cindy. I am just now catching up on everything with you. Can you please explain what exactly Chiari is? Is it genetic? Is it anything like what your little guys have? Sorry for being so dimwitted. I tried to look it up but I need someone to break it down for me. Hugs.

Carol said...

Hi Cindy!

Do you go to the chiro? All my kids have had one leg longer then the other at one time or another, even I have. I believe the Chiro called it a hip rotation. It is a simple fix compared to the rest of your life. Give it a try.

I am in awe of you! You seem to keep it together quite well. You have a great support group take advantage if you need to. Anything I can do for you let me know.

Carol

my4kids said...

I'm sorry you have so much going on right now.
That is great that you will be able to get the results back so quickly though. No one wants to wait over the holidays not knowing. Kenzie had an MRI to see if she had a tethered cord once (fortunatly it wasn't) she knew she was having it because she had heard the doctor say it. We talked alot about it and what would happen and that they would make her sleep. She did okay but she is used to shots and blood draws so didn't mind the shot part.