Okay, I saw my beloved Vince yesterday and his team, and I am feeling better. First off, I was very validated by the way my story drew a crowd in there, and the way Vince's mouth was hanging open, literally, in complete shock. Of course, he's very professional, and she's sort of a colleague in his same field, but he stammered, "I've-I've never known her to do something like this."
But he fleshed out the context a little bit. First of all, he says that she loathes patient management. She almost never follows up with anyone at all– maybe like 2-3%. Her whole orientation in the world is diagnose and move on. (Although I could argue that if that's her one job, she's done poorly at it since my diagnosis is still totally up for grabs.) He said that her predecessor, who is a good friend of his and the other big name in otoneurology around here, tried to follow every patient, and keep track of them, and spend hours with each one. But he couldn't cope with the overwhelming quantity of people he needed to do this for and his job became impossible. So she came along and went the opposite route, which is where I find myself. Also she does view herself as all about ears, more so than all about balance/dizziness. If someone is not in her little box, she sends them away. I'm not supposed to take this personally.
I think the only reason she wanted to see me again (remember: she told me to come and see her in three months, so that's why I was there) was because three months ago Meniere's was still on the table. Indeed, the diagnosis of the guy who sent me to her was firmly Meniere's. So I suppose she needed to check on that, because if I did have Meniere's, however little she wanted to deal with me, I would in fact be hers. But in the ensuing three months, I've been increasing my salt to the point of insanity and it only makes me feel better. (This is the POTS blood pressure thing- the main cure is increase salt and strengthen legs, both of which I've been working on.) If it were Meniere's, that would not be so. So within two minutes she surmised that I was not a Meniere's patient, and whatever fucked up mess in making me dizzy, it's not her problem. Hence, the old heave-ho.
The other thing that Vince really helped with was to check into the particular neurologist I'm seeing later this week, and to add another one. He knows everyone and knows what I need at this moment, what a huge help! So I'm seeing a spine guy on Thursday (my birthday!! how happy), because there could be a spine situation that needs work. Yesterday I can say that I went in very dizzy, and Vince and Co. messed with my neck for a while, and I came out less dizzy. Then I'm seeing another neurologist right before Christmas (the soonest available), who is all about dizziness and related issues. Vince thinks that this will be a person who can look at all the tests I've had and pull it all together into a coherent narrative. So that's hopeful.
Lastly, and perhaps most encouragingly, Vince assures me that none of this really matters all that much. The treatment is the same, because his approach is to try things and see what works and then follow an idea and amend it as needed. He just tinkers and tinkers until he gets a well patient– and seeing me for two hours twice a week is certainly a lot more helpful than my ten minutes of fame with the higher powers. He's the one who really understands my problem the best, and he will send reports to these other people and give them the head's up about what's happening to me.
Also, in closing, he brought up an unlikely possibility: maybe she's right. Maybe it's not my ears. Now, why would she say it was, and why didn't she send me to a neurologist and cardiologist in August?? Who knows? I said my line about "But you can't tell me my June 11 attack was NOT about ears!" and he said, "Well, you could've had a migraine episode that did that." I said, "REally?? A migraine can make you go deaf?" He said, "All your senses need to be processed through your brain. I had one lady in here the other week who was completely BLIND from a migraine. She was really freaking me out!" But he added that if so, neurologist number two will be on that case for sure.
Oh, who knows?
I came out of there pretty tired. Also I've been dealing with the dregs of h1n1. Yesterday I had a sharp pain in my side when I inhaled and felt very short of breath. This led me to worry that I was getting pneumonia and would wake up dead, like this poor woman my age who died suddenly of h1n1, who's funeral my mom went to recently. The fact that Ben is out of town all weekend made me all the more nervous, and so I called the normal dr to have someone listen to my chest and tell me I just have a pulled muscle from coughing. I'm going there later this morning, and hope for a basically clean bill of health. I mean, setting aside my brain, spine, ears, and whatever else effects dizziness.
I'm still pretty dizzy.