Crush Chiari

Chiari Malformation is truly a conundrum. No two affected patients will suffer the same symptoms, nor can someone with chiari assume that they know what course their 'situation' will take. Chiari can come hand in hand with any number of associated conditions: syringomyelia (as Brian), retroflexed odontoid, pseudotumor cerebri, tethered spinal cord. None of these will make the chiari issues any easier. Often patients who have multiple surgeries will begin to suffer such issues that you don't know what is caused by the chiari and what is caused by the surgeries. Surgeons can't even agree. It's really just a difficult thing.

So Brian has spasticity in his leg again, and why? Is it because he woke up in the morning and was taken straight to the doctor? Is it the syrinx? Is it the chiari? And so an MRI is in order again. But what if it shows something? But what if it shows nothing? Really, with chiari, who even knows. I follow so many pages, between caringbridge and CarePages (who, by the way, have really pissed me off by changing their format right in the midst of my annual crisis), that I have just seen so much. Rejection of dural graft, placement and failure of shunts, cranio-cervical fusions, tethered cord release surgeries. Even MRSA. The list is really infinite. There are controversial doctors and there are people with a cult-like mentality who insist that anyone who goes anywhere other than their beloved Institute must be risking their lives. Is that the case? How would I know?

And these are the issues with which I wrestle daily, and the reason I panic when I hear, "I noticed a slight increase in the tone in his legs, but he's done that before." But I never knew that he had done that before. So what do I think now? That the neurologist thinks (knows?) that I am neurotic (of course he knows, that is his business, he can spot one a mile away) and has been withholding information. Because last year, when he had the increase in tone, the good doctor had the films to look at right away. Which explains why he said, "I will be a while. I have to make comparisons."

Anyway, I guess it is best that he protects me from myself. But still, this is an awful thing, even at its best. There are issues with scar tissue, with bone growing back, and with plain old bad luck. Let me just go on hoping that none of these will apply to us. Meanwhile, I am hoping to hear back from the mom of the girl we spoke to before Brian's surgery. The girl had had had a couple of headaches, and was going in to see the surgeon on the same day we saw the neurologist. She doesn't have a neurologist, so she is followed by the surgeon.

In other news, we are still relaxing for the week. The room is nearly ready for E, the dresser, desk, and bed are all assembled and in place. All that remains to be done is to hang the mirror and a corkboard, to make the bed, and to get all the tools out of the room. I found a bunch of artwork at Marshall's today after Brian's ortho appointment, and hung that on the walls. Then there was one big dirty wall, so I stuck up a poster of a map of the United States. Better than nothing :-). I'll try to post some pictures.