So I guess I should update to let people know what's going on with me. After Monday, I was totally freaked out and had no clue what was happening. My hands and especially my legs all felt like they were on hyper-drive: every touch, every step, every move was excruciatingly painful. My knees gave out on me a few times and I could barely move my feet and toes.
Upon the urgings of my parents, friends, and even my former surgeon (the head of Neurosurgery at the University of Chicago Medical Center), I spent most of the day Tuesday on the phone with doctor's offices and radiologist offices in the area trying to figure out what to do and how to set up appointments for the right tests and such. I finally had an appointment set up for next Thursday (March 24th) with the head of Neurosurgery at Johns Hopkins Medical Center in Baltimore, and two MRI appointments for Friday (i.e. yesterday) and next Tuesday (the 22nd).
Wednesday is my busy school and work day, so I tried to cope with the pain with over-the-counter analgesics like Tylenol and Advil, but nothing was cutting it. About twenty minutes into my first class, I knew without a doubt that I needed to get into an ER as soon as feasible to get some stronger meds and some answers. I somehow made it through the rest of the day on Wednesday, and then my family friend, Mrs. Harrison, who lives near Annapolis, MD came and picked me up from work so that we could head to the ER at Johns Hopkins Medical Center first thing in the morning (or even that night if I couldn't fall asleep). After a long bath (which tends to calm my nerves down a bit), a bunch of Tylenol and Advil, and of course some Rachel Maddow, I finally fell asleep.
I woke up Thursday morning, grabbed a piece of toast, and drove to Baltimore. Mrs. Harrison got to the ER around 10 and of course sat around for awhile. Explained what was happening to a few nurses and to the attending ER physician. They contacted the Neurosurgery team and sent me to a hospital room where I could wait for the on-call neurosurgery resident to come see me. Thanks to my horribly tiny veins and perpetual state of dehydration, it took two nurses four different attempts to get an IV in me. When the neurosurgical resident, Dr. Bydon. finally came, I explained once more what was happening (that my symptoms from before my Chiari Decompression surgery were re-occurring for the first time since the surgery in November 2002), he ordered an MRI and a whole cocktail of meds, including nerve relaxants, analgesic narcotics, and steroids.
Right after I got my first dose of meds around 1:30, they sent me off to get my MRI. Once I got in the MRI, it became clear that the doctor had only ordered me to get my brain and cervical region (upper portion of the spine) studied. The problem with that is that I know that my multiple syrinxes are located in my thoracic and lumbar regions (middle and lower portions of the spine). I asked the MRI tech about it, but she could only do what the doctor ordered.
By the time I got back to my hospital room, it was well after 3 o'clock. A different nurse than my attending came in (my attending nurse was on a lunch break), so I couldn't ask her about the partial MRI. She gave me some more meds, and by that point, with the combination of all of the meds and the magnetic field from the MRI, having only eaten a piece of toast at 8:30am, I was feeling beyond out of it. I ate some crappy hospital food and leaned the uncomfortable hospital bed back to try and sleep (or at least rest) off some of the loopiness.
Mrs. Harrison was no longer with me as she had to go retrieve her children, and because I was so loopy, I couldn't seem to get the nurse to understand that I needed to go back to finish the rest of the necessary MRI. My nurse just said that I'd have to wait to talk to the Neurosurgeon when he came back.
By the time 6 o'clock rolled around, I was feeling much more coherent, Mrs. Harrison was back, and we were just waiting for the doctor to come back in. So far throughout the day, we had been relatively happy with the quality of doctors and nurses we had encountered. I've had a ton of horrific experiences with doctors who just give you the runaround and have no clue what they're talking about, so I was pleased that that didn't seem to be happening here.
Until...
This woman walked into the room. She was wearing typical hospital scrubs, but she had a horribly handwritten stick-on name tag which read "Marcia [don't remember her last name], PA / Physicians Assistant". She had one of those face masks that dentists wear half covering her mouth, and she stood several feet away from my bed at first, saying that she had a cold and didn't want to come near me. She also said that she forgot her name tag, but she really is a Physicians Assistant. Altogether, not the most confidence-inspiring introduction.
Marcia then proceeded to run me through a bunch of typical neurological tests (all of which I've done dozens of times before, including several that day). She made me get up and walk around the room, without making sure I was ok with it and not really caring that it was incredibly painful for me. She also ran a few other more invasive and in no way normal neurological tests which I will refrain from posting in cyberspace. Needless to say, this woman had horrible bedside manner and had no clue about the concept of achieving consent before running tests. We told her that we felt the MRI's they had run were incomplete, and she proceeded to lecture both me and Mrs. Harrison (a former ER triage nurse) about how when you come into the emergency room, they are only required to treat your immediate problems and make sure you're ok to leave. None of which I disagree with, but she said it in such a condescending way and she was so incredibly dismissive of the fact that I was still in extreme pain. All she kept saying was that she was getting ready to discharge me and she listed of a bunch of meds that she was writing me a prescription for, some of which were entirely different from the meds my Neurosurgeon had told me I was going on (and which I had already received doses of). We asked her what meds I had already been given today and when they were given to me. Mrs. Harrison was not in the room when I received my meds, so she hadn't kept track of it, and I was very, very out of it while receiving them, so I had no clue. Marcia, while staring at a computer screen which listed the meds and when the nurses had administered them, could not give us a straight answer. She kept saying one thing, then saying something entirely different. She kept trying to convince me to go on more and different meds, rambling on and on about how she has no actual evidence that certain meds work better, but she knows it does through anecdotal evidence...and on and on and on she went.
I proceeded to explain to her that, in the past, I've gone into the hospital several times, and they've thrown meds at me, and then kicked me out before actually making sure that the meds are working. And then I'm back 24 hours later. After giving us even more runaround medical bullshit, I finally insisted that I see my the neurosurgeon on call again. Marcia protested a few times, saying that she was relaying everything he wanted. We finally got her to cave and she paged the doctor to come see me.
Finally, a little before 9pm, the neurological resident came back in. We explained to him everything that had happened, from the impartial MRI to the horribly incompetent physicians assistant. He apologized profusely, made sure I got the correct prescriptions for the drugs he had originally ordered, told me to keep my appointment for the MRI the next day (i.e Friday/yesterday) to finish off the lumbar and thoracic spine studies, and to call Dr. Weingart's office if I needed anything else.
Finally feeling calm and no longer having horrible flashbacks of all the weeks which I spent dealing with the horrible medical incompetence of doctors who just like to throw drugs at a problem and then walk way, I went home (well, back to the Harrison's house for the night, and then home).
So really all I have right now is a bunch of meds, a complete set of MRIs being sent to multiple doctors (my Dr. from back in Chicago is kind of overseeing the case from afar), and an appointment on Thursday to go figure this all out. I'm feeling better pain-wise, but still quite loopy off-and-on. Especially yesterday after getting the other MRI done...I was quite out of it. Thanks to the wonderful Heather G. for taking care of me. Dr. Bydon kept talking about needing to redo the Decompression surgery, but, as surgeons think about everything in terms of surgery, I'm not actually reading too much into that. I'm just hoping to get some answers.
But I will say this much: I'm all in. There are no questions about that. If this is where God wants me, what He wants me to go through, I'm here. Yes, I never thought I'd have to go through this again. Yes, it's thrown me for a gigantic loop. But, no, I'm not angry or upset. I'm just here. All in.
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