Saturday, July 16, 2005

We can't cure that, but we can cure this!

This week was weird for me. When I went to see Dr. LeSage, the neurologist who specializes in sleep disorders, last month I told her I wanted her to fix me and she said okay. She was very positive and seemed to think she could help my terrible sleep, and by extension the pseudotumor, in fact she said don't rush in to brain surgery. Give her a chance to help. Then she sent me for a sleep study to see how my sleep apnea was coming along.

After the study I got a call from Johns Hopkins to schedule my follow-up and that is when I got some devastating news. Dr. LeSage no longer works at Johns Hopkins. I've heard two stories, one is that she was offered a huge amount of money to go elsewhere and two that she went back to school to get some training to work in public health. Funny how those two are opposites. The result for me is the same. The only specialist I have seen since I got sick who said they could help me is gone. I was on the phone with my friend Kevin when Johns Hopkins called and when I picked his line back up I cried from sheer frustration.

Tuesday Chris and I went up for my appointment, scheduled at 11:30. At 1 PM I was told the doctors had all gone to lunch but hopefully someone would see me soon. About twenty minutes later a Dr. Smith came out to get me. He looks like the Blake character in Delirious. Not exactly reassuring.

After a couple of minutes he said my sleep study was very interesting. He said I had no apnea. Later he amended that to an acceptable amount of apnea. I said I had to be the only person in the world to gain twenty pounds and lose their apnea and he said no, it must be the Diamox. I asked him if there were any studies showing a connection and he said no.

Then he said if I had any further questions to call them and he started to get up. I said hold on, if I am cured of apnea why do I feel terrible when I sleep without my CPAP machine? He didn't know. What about the night terrors? What about insomnia? What about the rest of it?

He said that since I have a central nervous system disorder he doesn't want to do anything. I could come back after I get shunt surgery (if I do) but he won't do anything now because there is no way of knowing how the PTC affects treatment.

He didn't care at all that the reason I am there is because when I get a good night's sleep I don't throw up the next day. He refused to help me.

I cannot express how angry I am about this. Kevin says it's like taking your car to the mechanic for carburetor work and the mechanic saying he won't look at it until you get the brakes fixed, but you can't get the brakes fixed because you can't drive your car to the brake shop because the carburetor won't work.

I'm sure you're wondering why I didn't complain more to this doctor and make him help me. I tried and I got so upset I knew if I said one more word I would burst into tears.

I don't want shunt surgery. I especially don't want it if there is a chance I can avoid it. I would particularly hate to get it just because this doctor won't listen or care about me.

Why on earth do you even become a doctor if you don't care about people?

On the plus side I did some research, based on what I know about Diamox treating mountain or air sickness, and in some cases it really does fix sleep apnea. God forbid it should fix my pseudotumor, but it has apparently cured the apnea.

Now I need to learn to sleep without my CPAP. For five years now I have slept with its reassuring noise and the knowledge that if I do stop breathing at night it will help me out. I feel like I'm trying to sleep without a safety net and oh my goodness everything around me is so noisy! I didn't even know my neighbor slept with the radio on all night because the noise of my CPAP blocked it out! But you know, looking on the positive side, maybe my electric bill will go down now that I'm not paying for fifteen pressures of air on all night long.

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