Exceptions
I understand that a lot of you don’t understand why I’m upset. Because for all intents and purposes, this is crazy. I should not be devastated to hear that everything’s normal. I know that.
Except.
Except that everything is so clearly not normal. I have heinous headaches, low pressure in my head, and I have low protein in my CSF. I have done all the research I can, and the only reason for low pressure and protein is a CSF leak. The only reason. I invite you to do your own research, I promise, there’s simply no other cause.
Except.
Except, I apparently don’t have a leak. I don’t have the only cause for the problem we actually know I have.
And I foolishly, FOOLISHLY, let myself hope. I hoped that we’d find an answer. I hoped that there would be a solution. I hoped that this would be the first step to stopping the pain. I hoped that there would be a light at the end of the tunnel.
Except.
Except there isn’t. There’s no answer. There’s no solution. And the tunnel has never been darker, more lonely or more full of hurt. And there’s no more hope. I’m done with hope. Hope has gotten me no where. It’s gotten me hurt, it’s made me weep.
And I don’t know where we go from here. This test has been my target, my goal. Just make it to this test. Just make it to this diagnosis and then figure things out. Once the diagnosis is determined, we can fix it and then I can try to go back to normal.
Except.
Except there is no diagnosis and so there’s nothing we can do. I don’t have a goal anymore. I am facing the future with outright fear, with panic. Because I cannot live like this. I have had a headache for 4 months. For 1/3 of this year. And there’s no answer. There’s nothing that can be done. I cannot live like this.
Except.
Except apparently that’s my only choice.
17 Responses to “Exceptions”
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Welcome! I'm Katie, a 27 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 falling over in public to being a doctor's wife. Sit down, get comfortable and stay for a while.
Oh, Katie, I don’t know what to say, other then I’m so sorry. You deserve so much better.
I don’t know why, but I really believe in your new doctor. The one who promised (PROMISED!) to get to the bottom of this. I can only hope, in my heart of hearts, that she won’t give up the fight. Just as I hope (and expect!) the same from you. And for those bad days where you have no hope, that’s okay too… I’ll hope enough for the both of us.
*hugs*!
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Honey, I think we understand more than you think we do. I know how much you were counting on an answer because an answer meant a fix and a fix meant an end to the headaches and the end to the headaches meant a chance to live your life normal and uninterrupted and less complicated…and with more hope.
I know you feel hopeless right now. But I will continue to hope. And pray. And lift you up to heaven. And believe. And wait. With hopeful expectation.
You may feel like giving up, but you don’t give up. You may feel like quitting, but you are not a quitter. And you may feel hopeless, but that doesn’t mean there is no hope.
It just means that right now, today, you can’t imagine hoping again.
But we will. Continue to hope. For you.
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lots of hugs headed your way.
(sat near you at the patientblogging panel at BlogHer.)
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I am so sorry. I wish today had given you the diagnoses you so badly seek. I know how scary and lonely it can be to not know. I will keep praying for you and for your doctor, to find the fix.
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It’s not wrong to hope, Katie. It’s completely human. Still, I know how much it hurts every time you don’t get an answer or a way to help with the suffering. Thinking of you.
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Oh Katie. This sucks. My heart hurts for you.
I don’t know if this will help, but I thought of this right away when you talked about how hopeless you feel…. this is from your very first nuero appointment in August.
“If my hopes were high before, they’re out of this universe now. Because she cared and she WANTS to help me. And I’ve been to a lot of doctors before, but I’ve never had one grab my hand in hers and offer me a promise that she would figure it out.”
I know it seems like a long, long dark, painful super shitty tunnel, but you have a very smart, very good person on your side in this fight. Don’t lose sight of that. There is a next step.
Take of yourself… don’t watch sad movies (My Sister’s Keeper, REALLY?
), eat comfort food. Lots of good thoughts and prayers coming your way.
Jen
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There is an answer – somewhere. I’ve been thinking about this for days. I’ve looked at this from the standpont of logic – because that’s what I do – logic. I do computers for a living and troubleshooting is my most special skill. So I have to offer this totally uninformed opinion – derived from logic. It may be they’re looking in the wrong direction – has anyone considered that you may not be leaking – but maybe you’re not getting fluid into your spine in the first place?
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That sucks babe. I know that you were hoping for some answers. Where is Dr. House when you need him?
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Oh crap. Sucky, sucky, mega-ass sucky. I can’t even imagine the despair you are feeling. All I can do is offer hope for you during this time when you are depleted. And totally unsolicited…but is there any way you can call Johns Hopkins and refer yourself to their neurology/neurosurgery? They are #1 in both these areas and I feel like these people could be ones who WILL NOT STOP until there is an answer. They are relentless in their work and research. I’ve had a very good experience their with their Arthritis center (referred myself, ended up seeing the head of the center), after going through a couple of other docs who couldn’t actually identify my problem or even relieve my symptoms without great risk vs benefit. Without Hopkins, I’d be in a very bad, painful place right now. OK, off my unsolicited soapbox. And hugs from Maryland.
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I’m a troubleshooter like lceel, and here’s my take: There is the illness and there is the treatment. Just because you don’t have a scan-visible leak, it doesn’t follow you won’t get the treatment.
I see it as a car radiator. Mechanics check your radiator to see if there’s a leak. “No leak, they say.” “But I keep losing fluid,” you say. “Well, it must be a pinpoint leak. Here’s some stuff to thicken up your fluids.”
You still have the low pressure, right? If you had an obvious leak, that might mean immediate surgery, and this just means that take less extreme measures. They can’t fix the problem, but they can still give you symptomic treatment.
I have found that I can research every corner of the internet to see, say, why my privates are oozing blood, and I find nothing, the ob-gyn says “I have no idea. Try this cream,” and I’m fixed. Didn’t need the cause to provide symptomatic treatment.
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Alright. you have an issue with to little csf, I have an issue where mine doesnt drain properly due to the clog so I get the opposite yet equally INSANE PAIN. solution. frankenstien tables, I share.. and if you need hips, or ass. I got extra of that too… just lemme know alway try to be there for fellow brain-iacs. Seriously. I feel ya babe. Wish we could make it go away.
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There is obviously a problem. It just sucks that the cause isn’t obvious. But we’ll just have to hold you up until the smart people figure it out.
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We will keep hoping for you.
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i am hoping for you…
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Oh honey, I completely, COMPLETELY get it. After every blood test, MRI, ABC test, etc, I get my hopes up thinking they’ll finally figure out what’s wrong. And everything comes back fine. It’s maddening. It makes me wonder if I’m crazy.
You’re not crazy. I’m not crazy. THERE IS SOMETHING WRONG. I wish I had something better to say, but that’s all I’ve got. Hugs and love.
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Maybe if we could get you on the space station and reduce the air pressure there so as to compensate for reduced spinal pressure? Perhaps you could take online classes for a semester up there and catch a break.
Maybe you could get the dye in again and be put in a barometric chamber like they had at St. Pauls for a couple of hours then taken out and scanned? The pressure from the chamber on your whole body including your spinal cavity ought to to squeeze out some dye if you have a slow leak.
Brainstorming for you since your brain hurts. Did you maybe just simply strain your brain? Like lifting something too heavy strains your back, did you think too hard or heavy and strain your brain? Maybe a thinking truss would help, have you tried wrapping tensor bandages tight around your head before you think heavy thoughts? A brain truss! You must think only simple thoughts unless you are wearing one!
See, there are three good theories to start checking out, we have only begun to think stuff up.
Now seriously at last, hope you get some real food for thanksgiving, here in New Orleans we eat well as you certainly know. Had a foot long all dressed shrimp poboy for dinner this evening.
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Aw crap, Katie, I’m so sorry. I hope you can find some way out of this, some hope.
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