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Those of you who read my journal regularly will know that we got back from Cleveland late Sunday night, after going to the Hydrocephalus Association ( convention in Cleveland, OH.

While there, we (hubby and I) befriended another conference attendee.  We attended a morning session with her on Friday (the conference started last Thursday), and she seemed fine.  After the session was over, I found her sitting in a chair in the hotel lobby, crying.  She told me she'd had a headache all week, and it seemed to be getting worse.  Headaches are a classic symptom of shunt failure.

Let me explain that there are two different types of shunts (drainage tubes for the excess fluid in the brain), programmable and non-programmable.  Programmable shunts can be "dialed up" or "dialed down" at the external reservoir (outside the skull, but under the skin), to either increase or decrease the flow of CSF through the shunt.  The thinking behind this type of shunt is that if you can get the pressure to a manageable level when a patient presents with symptoms, you don't have to revise (surgically remove/replace under general anesthesia) the shunt.  I've always had the non-programmable (if there's a problem, you almost always have to operate) type of shunt.

Rebecca (our friend) told us that her headache significantly worsened after her doctor (who happened to be a presenter at the conference--Rebecca is, fortunately for this instance, an Ohio native) dialed down the pressure at an appt she had with him the previous week.  When hubby and I found her crying in the lobby, her doctor was conveniently unavailable (he was performing a "live feed" shunt revision at the Cleveland Clinic, the hospital he's affiliated with which was hosting the convention).  Another member of his practice, also a convention attendee, came to look at/speak with her, and the decision was made to take her to the Cleveland Clinic ER.

I'd forgotten how much of an ER visit is "hurry up and wait".  We arrived (I promised Rebecca that hubby and I would stay with her until things were resolved, I know how painful those headaches are and how scary it is to deal with such things alone) at the ER around 11:30am, and hubby and I didn't leave until half past midnight.  During that time they did a "shunt tap", where they removed a few cc's of CSF from Rebecca's shunt reservoir to test for infection.   They also did xrays and CT scans, and further dialed down the pressure in her shunt, but they refused to do an MRI "because only a neurosurgeon can order that, and her doctor doesn't think it's necessary".  Right.  They actually think that I'm going to believe that in an *Emergency* Room, in an emergency (possible shunt failure) situation, with a patient in front of them in obvious distress, they "can't" order an emergency MRI.  Bulllllllshit!!!  Naturally, neither the xrays or the CTs showed anything wrong.

Her neurosurgeon finally found time to come to the ER, look at her, and promise her he'd see her in his clinic the following Monday.  Remember, he saw her on a Friday.  To all of us, "the following Monday" meant the Monday that would occur in several days.

Not so, as it turned out.  Gawd, as I'm sitting here writing this all the anger just comes back, and my hands are literally shaking.  Rebecca called the clinic to find out when he wanted to see her, only to be told that "he's out of town all week, she'll have to come in *next* Monday".  Jesus H Motherfucking Christ on a goddamn silverplated popsicle stick!

Isn't medicine supposed to be about eliminating suffering, instead of prolonging it? Or do I have that wrong?

ETA:  I forgot the "best" (and I use that term very, very loosely) part.  The ER *had* ordered a stat MRI for Rebecca, but when the xrays/CTs didn't show anything wrong, they canceled it.  That's right, sports fans, they canceled it.  I just got off the phone with Rebecca (about 2pm Central, 6/24/10) and she tells me that now, in addition to the headache, she's also having dizziness and nausea.  And her doctor's office is *still* determined to make her wait until *next* Monday for him to see her.

Oh, and when Rebecca got back home to Kent from Cleveland, she found a letter in her mailbox (snail, not email) preauthorizing the MRI!!!

Life just sucks sometimes, you know that?
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