Well, we saw the neurologist yesterday for the MRI follow up.
The Wrench and I helped The Twinkie down the long, cheerless corridor. The three of us sat lined up in a row along the wall of the exam room. The Wrench and I held hands, Twinks fidgeted on the chair next to me.
Suddenly, the neurologist is in the room; he heads straight for the big manila folder that The Wrench is holding - the films from the MRI.
He slides the films out, and starts slamming them up onto the light box. He points, and murmurs. I can't understand him - my head is swimming with exhaustion and fear. The Wrench is trying to ask questions, but the neuro is moving quickly through the films. We make out a word here or there as he points rapidly to blobs on the films "kidney", "other kidney", "bladder", "cord here", and then, "fine".
I force words out - "Do you mean that everything is OK?", and I can hear my heart drumming in triple time in my ears. The neuro nods curtly, then slumps into a chair. He fumbles with the films, jamming them back into the sleeve, and then slides them across the desk to me.
He passes a hand over his eyes - and it hits me that he is as surprised as we are. He is baffled by this turn of events; he had expected to point out where he would need to operate. Instead, the four of us sit in an awkward silence.
Inside my head, a choir of angels is singing, because he has just told us that there is no tethered cord. My stomach, however, has simultaneously taken an express elevator to the basement; this means that we still don't know what is causing the weakness, and the pain. We still don't have an answer for our beautiful girl, who has waited so patiently, for so long for answers.
Mixed emotions, indeed.
I don't know whether to laugh, or cry. I stare hard at the neuro. He avoids my glare, flipping rapidly back and forth through the chart that contains the clues to the medical mystery that is our daughter. I ask him again, trying hard - and not succeeding - to keep the hysteria and the fear from my voice. "Are you sure? There is no tethered cord?". This time, he answers. His voice is quiet, and resigned as he says "No. No tethered cord."
The Wrench squeezes my hand; I can't bear to look at him and see what I am certain is on my own face. "So, now what?" The Wrench's voice sounds like mine - just a little bit high-pitched and with an edge to it. "What's next? What do we do?". The neuro runs his hands through his hair, now clearly distressed. "I'm going to send her to physical therapy" he finally states. "Don't want to lose any more muscle function." he mumbles, almost to himself.
Physical therapy? I want to stand and scream! PT!?! Instead, I slump back into the chair. I'm stunned; I feel cheated and lost. What happened to his declarations at the previous visit; I distinctly remember him saying that "we'll keep looking until we find the answer!" My voice is growing more shrill with each syllable now "What about her pain? What are you going to do for that?" He sighs, and pulls his prescription pad towards him. A few scribbles and he passes me a prescription. "What is this for?" I ask. "Muscle relaxant" is the reply. "Shouldn't bother her too much. You know, make her goofy or anything." A few more mumbled words, and we are standing, leaving, the three of us walking back down that long hall. Twinks is as stunned as The Wrench and I are, she wanders around the chairs in the waiting room, asking us "What are we supposed to do? What is wrong with me?" I go to the window to get the return appointment set up. The Wrench is trying to make Twinks laugh; he is clowning around. He approaches me, leans in, and whispers "It's gonna be OK" and then spins around to goof off with The Twinkster some more. I am on auto-pilot now, writing the check for the co-pay, setting the next appointment, talking about insurance and authorizations for the stupid damn PT and trying through it all to keep the idiot smile pasted onto my face.
Finally, we are done, and out the door. Down the elevator to the lobby. TW says it first; "He was as surprised as we were". I nod silently, still not trusting my voice. Twinks looks up at me with eyes full of hope and tears and fears. I already know what she is going to ask us. "Mama, is this good? Or bad?"
"Of course it's good!" I say heartily, forcing a cheer I don't feel into my voice. "Now, we just have to figure out the rest of it, but for now, we know you don't have tethered cord, and that's good, right?"
We struggle over to the minivan, parked in the handicapped area. We load Twinks in, and TW and I get into the front seats. We look at each other, and instinctively keep the conversation light. We won't rehash these events until much later tonight, when Twinks is asleep.
Twinks is still in a great deal of pain. She still has "jelly legs", and she still has back pain.
She also has no diagnosis.
I am delighted that it is not tethered cord. It means no surgery, no chance of permanent neurological damage, no concerns about re-tethering in the future.
I am devastated that we still have no diagnosis. The neurologist has been a huge disappointment for us. I want him to be certain of what is wrong; I want him to tell us what it is, and what to do. I need answers, and more importantly, so does Twinks.