Wednesday, August 13, 2008

What we know so far*

*This is my recollection, interpretation and point of view on Riley's Chiari. Some may be inaccurate, but bear with me. I'm learning along with everyone else.

Riley has Chiari Malformation, stage 1. In a nutshell, as it was explained to us by Dr. Ellenbogen, his doctor at Children's Hospital, Riley has a size 10 brain in a size 9 skull.

Now, we all knew Riley had a big brain, but this is nuts!

Anyway, off the top of my head (no pun intended), Dr. E mentioned an analogy of a cork in a bottle. He said that the stem of Riley's brain is the cork and his spinal column is the bottle. What happens when a cork is in a bottle? Stoppage, of course. With Riley, his "cork" is resting within the "bottle", which is blocking the flow of whatever liquid needs to flow between his body and brain. In Rye's case, it's spinal fluid. As the fluid is blocked, cysts, or syrinxes, form within the spinal column (I think it's the column; I can't remember how Dr. E explained it exactly).

Riley has several cysts within his column. Unfortunately, they can only get worse. This is called syringomyelia. As they grow larger, the fluid flow can be blocked more, and the cysts themselves can put pressure on nerves and things like that. The trouble is, he is already exhibiting many symptoms that are directly related to the syrinxes.

For years, Riley's had some weird issues that, until about 6 months ago, we thought he'd grow out of. Difficulties with speech, difficulty swallowing liquids unless thickened, difficulty with fine motor motions (think holding scissors or eating utensils) were all experienced by Riley. All the specialists we'd see (and believe me, Marci took the kid to see a LOT of specialists!) would either say he'd grow out of it or they didn't know.

It wasn't until Marci finally told an ENT (ear/nose/throat specialist) that "I don't know" was an unacceptable answer that an MRI was finally ordered for Riley. This was mid-June of this year. A few days later, while we were driving to California for our summer vacation, the doctor called.

Anyway, if you want to read more about that, I wrote about it on my other blog.

I'll do my best to keep posts shorter as it's easier to write a short entry and easier for you to read.

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