State of the Brain: The Aftermath

So I saw the neurologist Friday. After a few minutes of him reviewing my chart (I was his first after lunch patient, so he hadn’t done it ahead of time), he asked me how I was doing. And before I could stop the words from flying out, I said “pretty freaking terrible.” I’m usually better at tempering my responses, but it was the truth.

We didn’t get as much accomplished in the appointment as I’d hoped, there just wasn’t enough time. He wanted to know about the headaches and that’s pretty much all we talked about. He was horrified when I said 20 (over 7 out of 10 on the pain scale) in April and apologetic when I told him that I had called to try to see him earlier after that miserable month. He didn’t have any theory for why they were worse later in the day, but he was intrigued by it. He was hopeful that the IUD removal would help because it can for some people, but since it’s been 6 weeks now and I’m not noticing any difference, he’s a little less hopeful.

Which was kind of the theme of the appointment, it turns out.

I told him that I had tapered off of one of the medications and he was understanding and said he probably would’ve too since it wasn’t helping. We ran down all the different meds I’ve tried over the past several years, why I stopped them (almost all were because they weren’t helping) and what the side effects were. And then he sighed heavily and looked at me.

He said that he really didn’t know what to do. He looked me straight in the eyes and told me he didn’t think we’d ever be able to medically manage my headaches. That I might just have to learn to deal with them. He didn’t mean it to be unsympathetic, quite the opposite, I could tell he was disappointed in himself at not being able to fix it. But his disappointment didn’t hold a candle to mine.

I felt like the time when I was a kid I tried to jump from a chair to the swingset, missed and landed flat on my back. The wind was knocked straight out of me. I could hardly breathe no matter how hard I tried.

To my surprise, a moment later he also said he didn’t think that surgery was the answer anymore either. Because the headaches don’t fit the high pressure pattern that my pre-surgery headaches were, he doesn’t see how another surgery would fix anything. So, I guess that’s good. Or something. He’s not sure how to designate the headaches because they don’t appear to be migraines, but they’re not classic Chiari headaches either. In the end he documented them as a remnant of the Chiari. I feel like my life is kind of a remnant of Chiari most days.

He poked around and floated a few other ideas, trigger point injections, botox, but after each one he said, “but that probably won’t help either.” In the end, he threw in the towel. He believes that there is nothing more he can really do to help me. Neither he nor his attending physician could come up with any reasonable ideas, so they’re sending me to a headache specialist. He told me that a fellow resident was starting a Fellowship in Headaches in July and if I called next week I could get in with her. Apparently it’s impossible to get an appointment with these specialists and he gave me his email address in case I had any difficulties setting up the appointment.

I walked away from the office with one prescription (a slightly higher dose of the headache med I’m still on, again with the caveat that it probably won’t help but he felt like he had to do something) and his business card so I could email him. And of course, a big headache, because duh.

I still don’t know how I feel about the whole thing. Each time he’s admitted that he didn’t know how to help me, but this was the first time he couldn’t even formulate a plan to try. That part of it makes me feel totally defeated, hopeless, freaking screwed. And though he is helping me get into see the headache specialist, I also know that there is no chance that the appointment scheduling is going to be straightforward. I envision seeing no one for months, which worries me. I am hopeful that the specialist is the right next step, but I really just don’t even know at this point.

This headache journey began for me in 2005. That was the first time I had ever seen a doctor for headaches and I feel like since then I’ve hit so many brick walls in trying to feel better. Each time I think I’m on the right path I instead find that there’s some kind of massive roadblock in the way. And each time the roadblock gets bigger and more difficult to find a way around. I don’t know at what point the roadblock is impassable.

I just want to feel better. I don’t have unrealistic expectations. I don’t expect to be headache free. I can’t expect that at this point, that would be absurd. But I have been expecting that we’d find something to make things better than the way they are now.

And now I’m just not sure what to think anymore.

9 Responses to “State of the Brain: The Aftermath”

  • Kelsey:

    Oh my gosh Katie, I can’t even imagine. Thinking of you!


  • Lynda M O:

    I have no words, Katie, to describe the disappointment you must be feeling. I am sorry that no one can help you. I don’t understand how they can Not Know.


  • Katie, you are an incredibly strong woman. I know you must feel crushed by the disappointment. I wish so much that there was a way for someone to help. Sending you love and hugs.


  • I can’t even imagine how disheartening this is for you. I’m so very sorry you’re still dealing with this with no end in sight – it breaks my heart to know you’re in pain all the damn time. :(


  • Susan:

    This feels a bit silly since you are married to a doctor,clearly intelligent and seeing very good doctors, but I saw this right after I read this post and thought of you,


  • Sue G:

    Oh, honey, you must be so discouraged. And while this news (or lack of any new news) might cause a lesser person to give up, I am confident that you will press on, determined to live your life with quality, grace and dignity. Intractable pain is daunting, at the very least. And while I can’t imagine what it must be like to live with constant pain at that level, I do know what it is to live with fairly consistent discouraging medical news. All I can offer is this: Do not allow anyone or any condition to steal your joy. Look for whatever is good in your life and focus on that. Find something to be grateful for in every circumstance. And keep reminding yourself that you are bigger than anything that would seek to harm you, even headaches!

    I know it sounds oversimplified, but it truly isn’t. I try to live each day doing just what I listed above. It isn’t always easy…but in the long run it is much easier than giving in to the problem and letting the problem become your life.

    You deserve better than that.

    Love you (and I don’t use that word lightly or loosely).


  • MissMary:

    I’m so with you in your frustration. I’m 46 and have been having 5-7 days a week of chronic migraines for 2 1/2 years (my average is 24-27 a month) and I’ve spent the past year on disability. I’m on my fourth Neurologist and my first pain specialist (who specializes in migraines) and every freaking one has said, “we’re out of options”. We’ve tried over 20 drugs, Cervical 1-4 spinal blocks, Acupuncture, massage, chiropractors, etc… And as you well know this has led to depression, feeling betrayed by your body and generally makes you want to scream. I, so feel for you and have NO IDEA how you’re going to school during all this as reading & the computer make my pain so much worse. I’m currently reading (very slowly, of course) a book, ‘The Magnesium Solution for Migraines’ by Dr. Jay Cohen. I’m willing to try just about anything at this point just to get my life back and I know you hope for the same. I’ve been following your blog for almost a year and it’s truly helped me to know someone else out there is in the boat with me and willing to share it with the world. Thank you for sharing!


  • Sam:

    Hey Katie. You have probably heard this all before but thought it couldn’t hurt to mention it just in case. My neurosurgeon had me do a scan which detected a CSF block which pretty much ran the length of my hindbrain and subsequently resulted in my 2nd round of surgery 8 weeks ago (dura patch was stuck to my cerebellum). He said that there was a new technique to detect this and there was only one MRI machine in Australia that did that particular MRI. Luckily the machine was at his hospital. Have they done a flow study using an MRI like this? And I’m assuming they’ve checked for Tethered Chord? I really do feel for you. I too am in the constant throws of Chiari/Headaches/Migraines. It sux.


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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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