Yesterday I went to the Cleveland Clinic to see this new doctor, a wonderful woman who I think can make my life much, much better. She's the Head of the Vestibular and Balance Disorders department within the Head and Neck Institute. In short, she's made it her life's work to figure out why people like me can't balance. She has at her fingertips this vast department, with scores of audiologists, neurologists, vestibular testing facilities, and more I can't even fathom, to help her in this effort. In short, I got to someone who can take the whole "evaluate and treat" concept to the next level.
My appt was at 9 a.m., and with all the Cleveland traffic, that meant I needed to leave her at about 7:30 and do battle with rush hour. I made it into the Clinic about 8:30, and I got into the little room to talk to the nurse at about 8:45. I mention the times because this turned into a grueling all-day affair. When I met the great woman herself, much like a favorite aunt I had never known about, one of the first things she said was "I'm not sure it's Meniere's." I said, "Great! I don't want to have Meniere's." She asked why I had not had an MRI yet, and seemed to think that my ENT's logic of waiting for months on end to see how my sinuses were going to clear or not clear was totally lame. She ordered an MRI for Thursday, an open, "ambient" one with soft lights and music. We'll see about that later.
I had figured that I would meet her, talk about the situation, and then she would schedule an array of tests for another day. But she asked whether I had "a little time" to stay and do some testing, and I replied that, for her, I had time for whatever she needed to do. It turned out that "a little time" meant six hours in a house of horrors especially designed for tormenting dizzy people.
First stop, a hearing test, which I aced! My hearing has healed up since June, when I had my first and worst vertigo attack which included dramatic hearing loss in my left ear. Second stop, darkness goggles and being thrown sideways and backwards on a little bed. I had some familiarity with this from my previous run-ins with this sort test. They do this to provoke dizziness and watch your involuntary eye movements. But I had none outside of the normal range. Also, that was quite brief and Dr. White administered it herself. "I'm not seeing it," she said. "Wait here." Apparently this meant that I had failed to show her something on the easy test, and thus had to go to the hard ones.
I noticed some ominous looking harnesses attached to the wall, and this thing, sort of like a three-sided phone booth, with mountains and sky painted on the walls and a special-looking metal foot pad to stand on. I thought, "Wow, that looks awful. The poor slobs who have to do that!" Somehow it didn't occur to me that I would soon be in it. Honestly it made me a little dizzy just to LOOK at it. The horizon was all jaggedy and the colors were too bright.
Soon, this other lady came in, Angie, the Vestibular Technician. She would take care of my testing today. She said that we would be together for two hours or so, and I called Ben with that update. He was home with the kids, expecting to go into work for the afternoon, which gradually became impossible as the day wore on. She very cheerfully asked me to stand up and get into this harness. "It goes on like a vest," she explained, holding out something that a guy over in Iraq would likely wear. She buckled me into it and then attached big straps coming from above to these big clasps on my shoulders. "This is just so you don't fall," she explained. "Also I'm right here behind you."
Thus secured, the test began. "See that little cloud in front of you? That is your new best friend. Just keep your eyes on the cloud." I stood there, gazing at this ugly, shapeless little cloud in front of me, as the horrible orange and blue mountainscape around me began to move. The pad under my feet recorded how I distributed my weight in response. Then the pad itself began to move. Then I had to try it with my eyes closed. Then the pad suddenly tilted forward so that I almost fell. And so on, and so forth until Angie felt she had tortured me enough. She helped me out of it and on to this little bed, where I sat trying to collect my inner ear into some semblance of functioning. I was very pleased that I didn't fall and didn't vomit. "How'd I do?" I asked. "I can't tell you the results," she said. "I just collect the data. Let's just say I got a lot of good information."
Next stop: the revolving chair. Now seriously, if you say the words "revolving chair" to someone with a dizziness and balance problem, those words sound like the worst possible ones in the entire language. "um… okay…?" I replied, and docilely allowed myself to be led to the next room. There I found a round booth, with an astronaut-type chair in it. The chair had lots of straps and a Christopher-Reeve-type head securing thing. Oh lord… that did not look promising. So she got me into the chair, and buckled lots of buckles, securing my waist and shoulders. Then she put this big headgear on my head with two cameras above my eyes and little clear disks on stalks below my eyes to reflect the images up to the cameras. Then, pitch darkness with a little red dot to look at. The most active little dot in the world, as it turned out. The damn thing just went all over the place, sliding here and there, disappearing and reappearing. It would pop up someplace and then vanish, and I had to keep my eyes in that exact spot without blinking. Trust me, this is hard. But then the chair started to spin, slowly at first, switch directions, spin again. It never spun all that fast, but seeing as I can't cope with still objects, this was not any fun at all. Worse yet, though, was the part where the chair sat still. Gray and white lines were projected on the walls all around me, and they spun. THAT was horrible. Or maybe the worst part was when she cheerfully said, "I call this one 'the washing machine'!" Right, true to its name it agitated me rapidly from side to side.
Eventually it was over. She unbuckled me but had me sit in the chair for a long time. As I sat still and tried to regain some shred of equilibrium, ANgie and I chatted. Kind of a long and awkward chat. We were waiting for the next room to become available. Since they were shoehorning me in, I didn't complain about that. But by this time I was terribly hungry, stomach growling, and thirsty. I got Angie to bring me some graham crackers and apple juice, which took the edge off. Probably best to not have a full stomach, I figured! But being light-headed due to starvation wasn't helping either.
Last stop, the worst one as it turned out, was the waterboarding room. There instead of pretending to drown you, they shoot water in your ears to make you the dizziest of all! Yes. This was the torture that reduced me to tears and had me hyperventilating while trying to count backwards from 70 by twos. The jets of scalding and freezing water, pumped into one ear and one temp at a time, apparently make the fluid in the inner ear change pressure and move suddenly. The result: the worst most gripping dizziness ever, combined with pitch darkness goggles. Even so, after I had survived what I thought was the utter limit of hell, Angie told me, "Looking at your numbers, I've had people in here with three times that level of intensity." What is the proper response to this, "did they live?" or "so I'm a wimp?" I don't know. I think I just gasped in horror at the idea. How??
Man, after all this I really felt that I needed to be carried out on a stretcher. Angie got me some ginger ale and after a long process of sitting up and gathering my shreds of remaining strength, she led me back to where I started. I sat in the little room, waiting in suspense for Dr. White to return and tell me what I have. Eventually I heard her outside the door, "She's very interesting… a very interesting case," I heard her saying. I was interesting! And yet, this is one situation where being ordinary is the advantage. One case where I would like to be, run-of-the-mill and … easy to treat. She came in with a young resident and said to me, "You're very interesting…." she began. "Something happened to your ear. I don't know what. But it's been damaged."
"So, it's an injury? Not Meniere's?"
"I'm not sure about the Meniere's. But I'm not ready to say it's Meniere's yet. To be Meniere's, I want you lying on the floor, spinning and vomiting for like six months."
To which I had to reply– "Oh, god, no… I do NOT want that!"
"But one attack with hearing loss does not make it Meniere's. It needs to go on and on. And I can fix that vertigo. [She can??] I think what happened here is that your ear was damaged and now it's healing. Your hearing is already back to normal. It's perfect. Your ability to balance will come back too, I think, with time and physical therapy. Also– " she laughed, "You're really bad at that!"
"I am?"
"Yes, that was your worst test of all. The others were all basically within normal limits. But you can't balance at all. I think your brain has decided to stop listening to your ear after all the LYING."
So… there has been a breech of trust between my balance nerve and my brain.. that's all…
"But what do you think happened to my inner ear?" I asked.
"I really don't know that. I can only measure how damaged it is. But one possibility is a virus. You know when you get a virus on your lip, you get a blister and it heals. When you get a virus on the labyrinth of your inner ear, it can strangle the nerve. It can damage the nerve such that it doesn't function anymore… but it can also heal."
Healing… what a wonderful concept. This is so much better — to think that what I have is akin to a broken leg, something finite. I don't even care if it's going to be six months of hardcore physical therapy. ("there will be LOTS of homework," she said.) I will happily go through that with the prospect that someday, some way, it will be normal again.
To say that I was exhausted after this, and starved, and limp, does not cover how miserable I was. And to top it off, I came out into a major hurricane. I mean, trees doubled over, lashing rain, power lines down, the whole bit. I had to sit in the car, which the wind was violently rocking, under a pelt of hail, for quite a while until it calmed down enough to drive. And then I had to navigate through a landscape littered with branches, with lakes of water at each intersection, and all the stop lights out. I sat on the interstate for half an hour at a complete stop– apparently we were waiting for standing water to drain.
By the time I finally stumbled into the house, it was 4:30. I could barely make it to the couch. But I was happy. I have a new diagnosis, one that I think it right, and one that I like much, much better.