Springing Eternal

Late Thursday night I sent an email to my former neurologist to see if he could help me get an appointment with the headache specialist he wanted me to see. He had given me his email for just this occasion, but I felt guilty using it anyway. To my surprise, he replied 4 minutes later and said he’d take care of it. I got an email the next morning, followed by a phone call and less than 12 hours after I had hit sent, I had an appointment with the new neurologist. For today, at noon.

Yea, I was surprised too.

So I met my new neurologist today, she’s just begun a fellowship in headaches in the same clinic as my old neurologist. It’s a pretty coveted fellowship, so clearly the girl is smart.

She had me take her through my whole history, starting when the headaches started in 2005. Going through the Chiari diagnosis, the watching and waiting, the progression of symptoms, the surgery. Then the CSF leak from the surgery, the period of no headaches, the return of the headaches, the lumbar punctures, the low pressure, the negative tests and on and on. We talked about all the medications I’ve tried for these headaches (there are a lot, none of which have helped) and the outcomes of all those medications.

Then she did a neuro exam, which was nearly perfectly normal. After the exam she just sat and talked with me. She said she’s confident that it’s not a number of things, most of which I already knew. It’s nice to be on the same page with a doctor. And even better, she believes she knows what the problem is.

Low pressure caused by a CSF leak.

Now, when I told my family this like 3 of them said (and I quote) “And?”

So yea, this is not a new diagnosis. The difference is that she finally made it make sense. My last neurologist ruled out a CSF leak and low pressure as the cause for a few reasons. First, my previous scans (cisternogram and myelogram) were negative for CSF leaks. That’s pretty strong evidence against a leak. Second, my headache was not positional. Typically with a CSF leak, when you are upright, it is severe, when you are laying flat, it’s better. And mine is not. And third, when I get leaks from lumbar punctures, the headaches are different.

But, it turns out most of that is not actually a persuasive argument agains a leak.

The new neurologist thinks I have a CSF leak around my brain, not my spine. And in those situations, the cisternogram and myelogram would not be sensitive tests to detect it. Especially if the leak is not constant and not huge, which is her belief. She thinks it’s a slow, relatively small leak that might not be open when I’m laying still in an MRI tube.

She also said that the reason the headache is not positional could be that the leak is not always open. She thinks the reason that my head sometimes hurts more when I’m laying down is because the leak itself is provoked in different positions. So it might be that I’m sleeping in a position that causes the hole to open. And the reason the headache isn’t as severe is because the leak is small, unlike the ones I’ve had after lumbar punctures.

The thing that sealed the deal was a review of my MRI from November.

My last neurologist had told me that the MRI showed that my cerebellum had herniated further, indicating a progression of my Chiari that might require further decompression surgery. It turns out, that wasn’t actually the case. The MRI showed “slumping” of my brainstem, which is a sign of significant low pressure. It’s also not a sign that we want to toy around with, the brainstem is pretty freaking important.

Her attending, who is a really well respected and very experienced headache specialist, agreed with her assessment. And he threw in an extra tid bit that has me reeling a little. He thinks that I may never have had a Chiari Malformation at all. At least not in the technical sense. I absolutely did have my cerebellum squish out into my spinal canal requiring brain and spinal surgery, but he thinks mine might not have been caused by having a small skull or a low lying cerebellum, but instead of from low pressure. He thinks my entire 7 year history of headaches might all come back to a CSF leak.

Bam.

It’s like for 7 years everyone has been telling me that the sky is blue because it reflects the ocean. And then today they were like, actually, it’s turquoise. And now I’m all, holy shit. The sky just might be turquoise. THE SKY MIGHT BE TURQUOISE.

I’m hesitant to be too excited because if we find a leak (and this is a big IF since it has alluded several scans already) using a scan I’ll be having later this month, the only way to fix it is surgery. You may or may not know this, but I am keenly disinterested in more surgery. Especially since if we find it on this scan, it’ll be brain surgery, and that’s pretty much my least favorite kind of surgery. And more than that, I just can’t quite get my hopes up that we’ll find it at all because I’ve been down this path before and the results have not been great.

Thankfully the new neurologist is aware of that possibility, so she’s trying a two pronged attack. In addition to the scan, she’s putting me on a SUPER high dose of Vitamin A, which should increase my production of CSF, which should cause the headaches to decrease. It could further validate the hypothesis that low pressure is the cause of all of this and might even make it easier to see on the scan.

I’m teetering on the boundaries of excited and scared. It’s been a while since we thought we knew what the problem was, and instead we’ve spent a lot of time taking stabs in the dark. Today someone turned on a small light, and got us on a path. The end of the path is uncertain and scary, the odds that we’re still lost are fairly high. But we’re trying.

And for now, that’ll do.

23 Responses to “Springing Eternal”

  • Stephanie M:

    I am SO happy to read this. I know that it’s not an answer, exactly…but it’s a start, and I think you need that. Here’s hoping some Vitamin A will be the first step in the right direction.

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  • That is excellent news.

    Vitamin A? Who knew that something non-prescription might be able to resolve the headaches?

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  • Stephen:

    Katie, I know that you are being cautiously optimistic, but, I’m just going to go ahead and yell “YES!” Positive energy is a good thing! :-)

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  • Lauren:

    I’m cautiously optimistic on your behalf — are you able to get started with the Vitamin A right away?

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    Katie Reply:

    @Lauren, Wednesday. The dose is really big, so it’s actually given by prescription. The pharmacy won’t have it until Wednesday after 3. So I’ll actually probably not start it until Thursday. Here’s to hoping!

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    Lauren Reply:

    @Katie, Oh, man, that “I actually have something new to try but the pharmacy DOESN’T HAVE IT” feeling is always such a letdown. I’m glad you’ll have it by Wednesday, though!

    [Reply]

  • mommabird2345:

    I’m so happy you’ve found someone who might be able to help! Hopefully the stars align and things start helping soon. Good Luck. :)

    [Reply]

  • when all else fails enlist the power of Hope. Here’s to hope.

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  • Lynda M O:

    Wow, I hope so hard that you are on the right path. May each step you and she take lead the way to a resolution. Sending healing energy.

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  • Part of me wants to give a polite golf clap to show my cautious optimism, but part of me really just wants to jump up and down and squeal on your behalf.

    I hope these are steps in the right direction for you.

    [Reply]

    Chelsie Reply:

    @Nanette, Ooooh, I’m golf clapping too!

    Yesterday when I was reading the last post you wrote, I sat there thinking about the way an MRI is done. I didn’t want to say anything and make an idiot out of myself, so I deleted the comment and moved on.

    Let me preface this by saying that I’m not a doctor and I have no medical background beyond some undergraduate classes in pathogenic microbiology and immunology (so really, that doesn’t count at all), but I wondered if you had done the traditional laying (lying, whatever) down MRI versus the standing MRI. It seemed to me that if there was no new detectable anomaly on your MRI but you still had persistent headaches, that the problem might be positional, like what your doctor alluded to. Sometimes patients with chronic back pain don’t show pathology on traditional MRIs, but these problems become readily apparent when the stand up. Gravity and all that, you know.

    I probably still sound like an idiot with all that quasi-medical speak, but I’m glad your doctor has a new direction to take. I pray that something works for you. Because being in pain all the time REALLY sucks.

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  • Ana:

    I think I have commented only once before, but I’ve been reading you for a while, and I just want to yell YES! (and freak out my sleeping housemates in the process) – but here is sending you cautious optimism, happy healthy vibes, and boatloads of virtual vitamin A.

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  • *raises glass to a hopefully turquoise sky*

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  • I have everything crossed for you that they find something and can fix it. And having everything crossed with three kids and a house that needs to be packed is a pretty big inconvenience. But that’s how muchI love you and want you to get better.

    xo

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  • Jamie:

    I got a shit eating grin while I read this. I am SO SUPER excited for you! I don’t want to be cautiously optimistic though I want to scream from the mountain tops! You aren’t going down the same path you’ve been previously lead so this could be so super great. And even if the thought of the surgery makes you shake in your boots if you know how to relive some of the pain with this new information that’s already a great outcome.
    *and I really think you’re more excited than you’re letting on – therefore – I believe you… are a liar ;)
    Can’t wait to hear about the how the Vitamin A goes and to hear some test results!

    [Reply]

  • Wow, this sounds like potentially REALLY good news. That’s awesome! I hope they come up with a way to get you some (non-surgical) relief quickly.

    Oh, and based on the Twitter thread I read, I guess you’re going to owe Heather one hell of a gift basket, no?

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  • fingers and toes crossed that this tiny light is shining on your road to recovery!

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  • Katherine:

    This sounds like it could be very good news. I feel bad for rooting for potential brain surgery. But it would be so wonderful if you could finally be cured of this headache.

    You probably already have, but make sure to do research on the vitamin A if you’re still trying for a baby. I remember being told that too much vitamin A could be harmful for the baby when I was pregnant.

    [Reply]

    Katie Reply:

    @Katherine, Yep. No babies while on massive doses of vitamin A. You are correct (my doctor noted that too). :)

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    Jodi Reply:

    Crazy, I was going to mention the same thing. They put me on high doses of Vitamin A several years ago but because of my age, and the fact that my doctors all knew that I wanted children (single or not), that I should make sure I talk to my OBGYN since I can NOT take ANY form of BC.

    This sounds like great news.

    If I missed this, I apologize, but what kind of testing do you have to go through at the end of the month? Nothing too invasive, I hope? But I would think, at this point, WHATEVER IT TAKES!
    Jodi

    [Reply]

  • THIS. IS. EXCITING!

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  • Katherine:

    Oh, and if this IS the answer, I totally nominate you and your new doctor for an episode of Mystery Diagnosis. The show is a guilty pleasure of mine and this story would be right up there with the most interesting. Maybe you could profit a little from this miserable (hopefully soon to be gone) headache.

    [Reply]

  • I hope the vitamin A does something! It must be refreshing to have someone shed new light on everything. YAY!!!! I really hope this works out, even if you don’t want more surgery but ultimately will be the end of your headaches i say go for it.

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Welcome!
I'm Katie, a 30-year-old, wife, mom, former teacher-turned PT, who also had brain surgery in November of 2007. This blog chronicles my daily life, from mundane to crazy, often with far too much detail. Sit down, get comfortable and stay for a while.
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