The next stop
This past week has been potentially the worst ever, headache wise. And yes, the stress has been monumental, but the stress ended Monday and the headache has raged on.
When I got home from my exam on Monday I took a 2 hour nap and then went to bed at 9 anyway. Despite the number of hours I’m spending attempting to sleep, I’m not actually achieving very many hours of actual rest. Add to that the eye issues and the neverendingholycrapomg ringing in my ears and I’m just this side of CRAZY.
On Monday, Slappy and I went out to dinner to celebrate my being finished with the semester. By the end of dinner, I was nearly in tears from the pain. We were going to do some holiday shopping at Target and I couldn’t. I couldn’t do anything but lie down. Moving any muscle, using any energy was excruciating.
The headache is the same as it has been for almost 20 weeks, but it is more intense. More all consuming. More painful.
After I got the news of the perfectly normal cisternogram, I called my neurologist’s office and scheduled an appointment. The earliest they could fit me in was January 21st. And for a day, I accepted that as a part of the shit-fest that was my life.
And the next day, I picked myself up, I got mad and called the nurse and said NO. Because by January 21st, I’d have almost reached the 6 month mark with headaches. And that is not acceptable. And the nurse agreed.
So I’m going back to my neurologist tomorrow.
The message she left me two weeks ago said that it was time to start treating the headaches because we were finished testing. And that is not acceptable either. Why are we treating a headache that we don’t the cause of? Why are we giving up already? What happened to her promise that we’d figure it out?
We know I have low spinal fluid pressure, that we’ve seen twice now. We know I have low CSF protein, the lab reports confirmed that. And we know that the cause of those 2 things in conjunction is a spinal fluid leak. Period.
And to assume that because one test, (which involved lying down for 3 days and not doing any activities that would actually cause a leak) is an accurate measure of whether there’s any chance of a leak, is crazy. And it’s not going to work for me.
So tomorrow at 8:30, I’ll see the doctor and I’m going to ask her some questions. And if she’s giving up, then I’m giving up on her. I have the name and number of a neurosurgeon in Los Angeles who specializes in CSF leaks and my insurance covers him.
So the bottom line is that my doctor gets one more chance. And if she doesn’t follow through on her months old promise, then I’m moving to the next stop, the next doctor.
Several times I’ve come close to quitting everything. I’ve said I was going to and I’ve actually meant it. But for a variety of reasons, I haven’t.
I’m not giving up. I can’t. This is my life we’re talking about.
Tomorrow I start fighting again.
15 Responses to “The next stop”
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Welcome! I'm Katie, a 28 year old, full-time graduate student who just happened to have brain surgery in November of 2007 to give my ginormous brain a little more space. This blog chronicles my daily life, from relentless headaches to being a doctor's wife. Sit down, get comfortable and stay for a while.
You should be really stinkin’ proud of yourself – I know I am proud of you.
Hope that tomorrow finds answers of one sort or another.
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I am by no means an expert on low CSF, but I did read that it usually takes a number of blood patches to fix it. If she had said “We won’t treat it until we know what’s causing it,” I’d think that would be much much worse. They can do all the extra tests when you dont have a headache. However, Mystery Diagnosis agrees you shgould change doctors, that always seems to be the trick.
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Katie Reply:
December 16th, 2009 at 7:44 pm
It usually does take a few blood patches to close a leak, but the leak I had from the LP isn’t the one that’s still causing the pain. It’s got to be a leak in my brain. That’s the only logical explanation.
Mystery diagnosis FTW!
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You go, girl!
If she won’t figure it out, then find someone who will.
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Good for you!
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You go, girl! And don’t stop until you get an answer and some relief. Major relief.
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Katie, just read your comment to me in my guest book. All I can say is that you DO have the same hope. You get up every day and face your life no matter what that life holds. You think of giving up. You wish you could give up. But your tenacity, your perseverance won’t let you. And those things are fueled by the tiniest of hopes…hope that it will get better…hope that your life is worth the effort it takes for you to live it. You have so much hope. You’re just like Tinkerbell…only you’re afraid to clap. So I continue to clap for you.
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Good for you, Katie! I love this post! You sound so strong and determined. With an attitude like that you’ll get this thing solved! Maybe not tomorrow, maybe not the next day but you have a plan and that, my friend, is a start. Good on ya! *hugs*!
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Look at you kickin’ butt and takin’ names!!!
I would suggest you call the 2nd Dr. tonight and leave a message to get scheduled.
If you don’t like what goes down tomorrow morning the ball is already rolling.
If you do like it, either go for a 2nd (or maybe it’s a 5th but who cares) opinion or don’t make the appointment.
Can’t wait to hear what happens…
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EXCELLENT! It’s nice to see your spirit come back.
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Hells yeah! This is a great post. Glad to see the fire. And you absolutely should find a doctor who WILL find an answer, no matter what. They are out there. Good luck!
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Good for you! Don’t give up, fight for yourself and your health. Going to another dr is good. Even if your dr tells you everything right tomorrow, consider going to the 2nd dr anyway.
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Good luck with kickin’ some butt!
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Good to have a plan…very good!
Hope you get answers tomorrow, but if not, then it’s very good to have a plan!
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I’m so tired of doctors trying to treat me when they don’t know what’s wrong. To me, that’s being lazy, and it’s potentially dangerous, as I’ve tried more medications than I can count and most of them had weird side effects on me. Not cool.
Keep fighting. Don’t give up, and don’t let your doctors give up either.
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