The last few days have been a blur of medical facilities, babysitter finding, insurance wrangling, and boy-struggling. I'm pretty tired by all of it. But that has been the theme of the whole summer hasn't it? I think I work 20 hours a week on managing my vestibular disorder. Now that it's seeming more and more like an ear infection gone wrong, it's hard to imagine how much trouble it has been. But so it goes! The options are few.
On Wednesday, after clearing the idea with insurance, I called up the new vestibular therapist that Dr. White at the Clinic specifically wanted me to see. They had an appt at 3:15 that very day, which I wanted to take. Babysitting!! It makes everything so much harder. I called around a bit and amazingly, lucked out. I got my very favorite babysitter over here. And also, just in luck, she agreed to come the following morning so that I could keep my MRI appt., despite the fact that my already-scheduled babysitter was down with a sore throat.
So I drove out to the unfamiliar world of Wadsworth, OH, where this new therapist works. It was a big bustling place, full of people on tables, odd-looking gear, people slowly walking around or in various stages of physical rehab. I knew I had come to the right place right off, when the lady who came to the waiting room called my name: she came all the way over to me and asked me, "Are you spinning right now? Can you walk on your own?" This small consideration seems lost on just about everyone who works with balance and dizziness! I've been dusted by so many brisk nurses who just call my name and take off at high speed, while I struggle along behind.
I went into the little room and met my new vestibular therapist, Vince, who I already adore. He sat down and began to ask me strange questions, such as have I sprained my ankle? I said, "You mean, ever in my life? Yeah, I really tore this one up about fifteen years ago." It seemed surprising to imagine that this was relevant, but he said, "That's probably part of the problem right now." He explained that your balance centers are, of course your ears, but also your ankles and your neck. After examining me all over and having me stand on foam (!! horrid!!) and testing my strength and seeing how far I could turn my head this way and that, he graded my parts: ears, D; ankle, B; neck, C-. So our balance therapy (going to be twice a week for now, with lots of homework!) is going to center on ankle strengthening, neck flexibility, as well as obvious balance exercises.
Huh. This seems to me to be a much more thorough and comprehensive approach. Also, here's the best part– salt!! He asked about my blood pressure, which I said was normal to slightly low in general. He said that some of my dizziness upon standing up was probably low blood pressure dizziness, and that my two months of low salt diet and diuretics had probably made that a lot worse! I told him about my extreme low blood pressure experience– a few eeks ago I was taking double diuretics and being extremely careful about the salt, almost no salt, because I was so dizzy for days on end and desperate to make it stop. Well, the dizziness didn't let up, but I got such low blood pressure that it was almost dangerous– I was ice cold and weak, pinned to the couch. I was by myself and actually got scared lying there, such that I got up to consult with Dr. Google, and while up decided to hell with it and ate some salty leftover restaurant food of Ben's. That made it all better! Then at Pawleys I ate lots and lots of salt… yum. And didn't seem any more or less dizzy than I had before. In fact the salt test at Pawleys was part of my move to another specialist– it just wasn't correlating with salt at all. What was triggering my dizziness seemed to be all about the physical environment, slopes, darkness, uneven pavement, that type of thing.
Anyway– Vince says that I should eat salt. In fact, he says that I should eat EXTRA salt! He says I should keep V-8 juice on hand for moments of standing up dizziness. He says low blood pressure dizziness is something they deal with all the time. He also said that he suspects that it's all just a virus that attacked my inner ear and left a lot of damage in its wake… he sees that all the time. About the idea that I would have three months of upper respiratory infections, including a severe ear infection that actually ruptured, and THEN in a totally unrelated event, just by chance, get Meniere's disease right afterwards, he said, "I don't think you'd be likely to have that kind of luck." Exactly.
So yesterday I had the big MRI. I switched it out from another closed MRI that was scheduled today, because I wanted an open one. I didn't want to be in a drawer for an hour unable to move. I'm not claustrophobic under normal circumstances, but that is not normal. I had asked for an open MRI in the first place at my old ENT, and was told that for this body part (brain and internal auditory canals) you couldn't do it open for some reason. This seemed odd to me so I checked with Dr. White on Monday. She said, "Sure you can do the open MRI out at Hillcrest. It's 'ambient', with soft lights and music." I went in for it yesterday early in the morning.
It was very ambient. The lights in the room were soft blue, and a scene of mountains was projected on the walls. I got into the large hulking machine, wearing my special hospital outfit. The lady put ear plugs in my ears, and big earphones over the ear plugs, and slid me into the thing. It was a lot nicer than being in a drawer, because out of the corners of my eyes I could see a little bit of space around the edges. I was effectively under it rather than in it. Soft music played and I was soothed by the gentle roar of ocean sounds. However, the calming effect of this ambiance was disrupted when the jack hammers started right above me. Then it sounded like a bull dozer was idling and revving its engine alternately. Then the beautiful music started again. Indeed, I had to stifle a giggle at the idea that this was their way of relaxing me. However, what happened next was not at all humorous.
The lady came in, saying it was time for my contrast. SHe pulled just one of my arms out of the machine, and I explained to her where my best vein is. She found the vein right away, and the needle stick was no big deal. However after a few minutes of contrast running into my arm, something started to hurt. She said, "Oops, I'm gonna take that out. It just popped." Apparently the contrast needle had slipped out of my vein, but was still in my arm for a short time, and the contrast had gotten loose into my tissue. At that moment, a searing pain started to go up and down my arm. "I'm not going to lie to you, when it gets into the tissue it really burns." She elevated my arm and began rubbing it and indeed, I think she was trying to squeeze the contrast back out of the puncture…! The pain quickly became totally excruciating, such that I was unable to keep my feet still. It felt like battery acid on the loose in my arm. I started crying. The lady was quite flustered and got me a cold pack. SHe kept saying, "is it feeling better? Is it letting up?" She clearly felt just awful that this had happened. I really didn't want to upset her, but the pain was over the top! After a little while, the shooting, tingling sort of thing did let up a bit. I agreed to let her finished the last pictures, and just got out of there.
My arm hurt all day, and I felt totally exhausted after all that. I had both boys all afternoon and it was a marathon.
Now my fear is that she didn't get enough dye into my body, and they didn't get the picture they needed. My other fear is that i have a brain tumor. My hope is that they will actually be able to see the damage to my balance nerve, confirm the diagnosis, and determine the scope of the problem. All this will be known today sometime…