This is why

I don't like to make Christmas cookies, candies, and such for Christmas. Not only do I stink at making them, it somehow added 13 friggin lbs to my arse!!! 13!!!! Am I supposed to throw my arms up in the air and say," oh well, it's Christmas? I'd really like not too, but I think it's my best defense right now. Holy Crap! I guess I know what my big plans are for this up and coming year......losing the EXTRA 25 pounds I need to reach my goal!!! Swell.

Yesterday, Riley, and I, made our trip down for her NS appointment. To be frank....It stunk. I know that there aren't a TON of Chiari (KEY-R-EE) specialists out there, and I know there are no experts at our CH, but I have been doing all the research I can about this birth defect, and yesterday, I think I got a slap in the face for it.
Now, I know, that the symptoms Riley is having can go both ways. It COULD BE from the Chiari, or it Could BE because she's almost 5 yrs old . Most likely, the first. Anyhow. They tired to tell me that none of Riley's symptoms have anything to do with the chiari.

(What is Chiari Malformation I?
Chiari Malformation is characterized by the downward displacement of the cerebellar tonsils through the opening of the foramen magnum and is caused by an underdeveloped posterior cranial fossa (PCF). There is no neurological abnormality of the brain or brainstem.)

Riley's BIG symptoms are;

~ loud noises: she covers her ears and cries (public toilets flushing, when Jake is near her and barks....)

~ Pressure in her ears/head when we fly: Cries going up and down.

~ Bed wetting at night: Floods he pull up and wets her bed.

~ Sometime she gags on certain foods: yogurt, mashed potatoes, cottage cheese..

~ Low muscle tone on the RT side of her body - which she has had from birth.

Here are a few from a chiari site:

General imbalance / clumsiness,
Intolerance to loud / confusing sounds,
Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes,
Decreased muscle tone,
Gag reflex problems / lack of gag reflex,
Frequent urination,
Dry skin and lips,
Pressure in ears / ears feel stopped up.

Also, he mentioned to us that there was a decrease in "flow space", but it's nothing to worry about.
"It is not uncommon for an MRI to clearly show a lack of CSF (spinal fluid) flow space posterior to the cerebellum and, yet, be reported as normal". Also from the chiari site.

So, after yesterday, I am bound and determined (more than ever) to get her into the BEST Chiari expert in our area. This doctor is at the University of Chicago - Children's. I know he is tough to get into, but hopefully it will be worth the wait. I have heard nothing but good things about him.
He requires 2 tests before he will see us - the CINE MRI, which we have, and a swallow study, which we are doing today.
Hopefully, I will be able to get both things in the mail tomorrow, and get the ball rolling.

So, until then, I will be canceling our ENT and urology appointments that the nice people made for us, and pray this doctor has an opening sooner than later.


nailgirl said...

Good luck Cindy. I will be thinking of you.

Jean said...

I hope you can get into this doctor soon! Good luck, prayers and good thoughts sent your way!

Michelle said...

Good for you for being aggressive!

Hope to see you soon!

Kristen said...

Hi, I had googled Chiari + Swallow Study and ran across your blog. We are in the same shoes! My son has Chiari and we've also had terrible experience with our local NS. We're taking our son to see Dr. Frim in Chicago. Our appointment is in Feb. Is that where you're going too!? I'm really looking forward to seeing a Doctor who knows what they are talking about. Good luck with everything!!