I called my neurosurgeon last Friday and cried uncle. Things had gotten out of hand with the pain and the dizziness and I knew it was time to pick up the phone, so I did. But on the message I left, I was vague about what was going on. And so it was late Monday before I got a call back.

And then I uttered the magic words. Face tingling.

Wow. You’d have thought I said that I had a bomb strapped to my chest that I would detonate in a kitten farm if they didn’t deal with me in that moment. There was a conference with the neurosurgeon right then and there, wherein they decided that I didn’t just need to be seen, I needed a brain MRI first. I was told someone would call me back to schedule that day.

I finally called them today (the nurse was really confused because she swore someone called me) and I got an appointment for an MRI at noon on Tuesday and an appointment with the neurosurgeon at 1:30 the same day. We’re doing it wham-bam-thank-you-ma’am style this time. No waiting for results, just image and appointment.

I fully expect this MRI to come back clear, I’m not worried, except maybe about the cost. The MRIs always come back clear, and so before we scheduled I questioned the need to have another one. They assured me that it was time to do another one of my brain because it’s been a while, so I gave in and agreed. What’s another few thousand dollars between friends?

Here’s how it’s going to go- I’m going to have the MRI, I’m going to walk to the doctor’s office. He’s going to hem and haw a little and then say that everything looks normal. And then we’re going to sit there, awkwardly, in the silent void, while he thinks of things to suggest and I think of how frustrating this process is.

Aside from this MRI, I think we’re done with tests. We just sort of ran out of them.

We know I have low pressure, in fact, we know I have pressure that is getting lower and lower. It started at 8, which is moderately low and at last check it was 4, which is outside of the norm low. It’s not fixing itself and the headaches sure as hell aren’t improving. I now have dizziness as a constant companion and the ear ringing is at an all time annoyance peak.

So I have this low pressure, but we’ve done every test there is to do and I don’t have a spinal fluid leak, which is literally the only documented cause of intracranial hypotension. Go ahead, google it. I have. Over and over. There’s nothing else. I have a condition but I don’t have the only documented cause. Isn’t that special?

And now it’s time to treat it. I honestly have no earthly idea of what the treatments could include, because all the literature seems to indicate that I’m an anomaly (which is pretty much my favorite thing to be). But there must be something. There has to be some drug, some diet, some change I can make to increase my pressure and I’m ready to try just about anything.

When I told my husband that I knew he was right and that it was time to stop having tests done I sobbed and sobbed because it felt like defeat. It felt like I was giving up and letting my pain control everything. It felt like, if we quit looking I was accepting that this was my life, forever.

But I’m not.

Because I’m not walking away, I’m not accepting defeat or this fate. I’m just trying to find a way to control it. It doesn’t matter if it’s caused by a leak or my body being defective. It’s just time to fix it, however, with whatever, and at any cost.

And that will be my mantra on Tuesday.

It’s time to try something, anything, because I’m just not willing to lose another 7 months of my life to pain.

I truly don’t know if I can continue on like this and I’m scared to think about the alternative.

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