News, now with a side of panic
So, I called the neurologist’s office today because the spinal headache just wasn’t stopping and I couldn’t deal with it anymore. Yes, internets, I asked for help.
Astoundingly, the neurologist actually called me back (and then was like, oh, I see you left messages before. I’m so sorry. You didn’t actually get on an airplane, did you?) and she said that since it was pretty clear that an epidural blood patch was going to be necessary that we may as well do the radioactive test she was planning for November (where radioactive isotopes are injected into the spinal cord and MRIs are done to follow the leaks) like today or tomorrow. She said she’d speak with radiology, see how soon they could do it, and get back to me.
I freaked the hell out. I need much more time to obsessively google about mentally prepare myself for big scary radioactive tests.
She called back a few minutes later and said the neuro-radiologist suggested that this might be too much for me to handle right now. Frankly, I don’t know who that man is, but I’d like to kiss him on the lips.
So instead, we’re just doing the blood patch sometime tomorrow (waiting for the call to schedule it after many unpleasant phone SNAFUs, we were finally able to nail down an 11am appointment. But blood has to be drawn at 8:30. And I can’t eat or drink after midnight tonight.) and saving the mad scientist radioactive isotope study for next month.
I also got the results on the CSF they took out last week.
I don’t have MS or any other scary pathology. Which is great, truly. I don’t want you to think for a minute that I’m not relieved by this, because I am.
But, what the CSF tests did show was low protein.
Low protein has one true cause: a CSF leak.
And not the one that I have right now from the LP. A long term leak. One that has caused the body to lose CSF faster than it should. One like what the neurologist diagnosed me with after the low opening pressure on the lumbar puncture last week. One that has caused me 10 weeks of pain now.
And I should be relieved. We have a diagnosis. We need more testing, but we have a diagnosis.
But I’m not relieved. Because now I know what the fix is. And the fix isn’t cute or small. The fix isn’t a pill or rest or time.
The fix is brain surgery.
Don’t get me wrong, I want to live without pain, but I do not want more brain surgery. I don’t want to be in a hospital again, I don’t want to have my head shaved again (look, I know that’s petty as shit, but it sucks to have your head shaved, it just does), I don’t want to have my whole family crumbling with worry again.
But apparently, wishing that it’ll all go away doesn’t work.
And so I’m moving forward. First with the blood patch. Then the radioactive study. And probably eventually to brain surgery.
Shit.
15 Responses to “News, now with a side of panic”
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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.
Katie – I’m new to your blog and have never commented before, but just wanted to offer some virtual hugs and the hope that this first step will allow you the pain relief you so desperately need. Hopefully the pain patch will help improve your quality of life, allow you to get out of the house (yay!), get back to school and make a plan for what is next. One step at a time – hopefully once you feel better, you can focus and get through what comes after that.
Best wishes!
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Wow. That is great to have a diagnosis! But man that sucks. Brain surgery just sounds scary no matter how you slice it (sorry, couldn’t resist). I really feel for you and I hope you get some relief soon.
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Great to see a possible fix on the horizon, sucks that it isn’t a simple one. Soo sorry, but praying you’ll get through it fine and you will be well again.
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Oh man, what a double edged sword for you. I wouldn’t want surgery either, but I guess it’s better than no fix at all?
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Oh buddy. At least you know now. But still.
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Awwww shit.
We’re here for you, darlin. Shaved head and all!
xoxo
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I’m glad you have your diagnosis. I’m sorry there wasn’t a pill or a rest cure for it.
And you made me cry. My Katie has to have her head shaved next Tuesday morning before her own skull/brain surgery. I hope that she can be as strong as you are. I hope we all can. I’ve been so scared about the surgery, that I really hadn’t considered how much it is going to suck for her to have her head shaved. Sure, she’s eleven months old, but the girl has hair — has had lots of it since birth — and now it’s going to be gone.
Our thoughts and prayers are with you.
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is this the right time for me to make a joke about also having to shave my hair for my surgery? No? Think about it…yeah, Mike says it’s not the right time.
I wish I could wave a wand for you Katie. I wish it so much.
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Oh Katie!
first of all I am so glad that you will have the blood patch and go back to your ‘normal’ headache instead of this hell. Glad you got the test results and it is something that is fixable. i’m sorry it will come with such a high price, I wish there was another way. I’m so proud of you for moving forward, that takes a lot of courage in my book and you are on strong woman. I am in awe of you…;p
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Oh, honey. Hugs. Is it safe to say that you are at least better off having this problem now that you are back in CA and out of LA, doctor/treatment wise? Are they more experienced there? Is there even that silver lining?
Not petty shit at all.
Again, hugs.
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No one – especially someone as young as you – should ever have to say they don’t want MORE brain surgery.
I have a friend (as I may have mentioned before) who also has the Chiari issue. She has opted against having the surgery you had previously because there’s such a strong chance of it not actually helping, long-term. And also because the idea of someone cutting into her brain is frigging scary!
I am sending you strength as you go through all this. I am glad you have a means to an end of this terrible headache of yours, even if the means is less than ideal (what an understatement!).
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I’m so glad they’re giving you the blood patch as soon as tomorrow! Oh, and that the radiologist was that cool. Seriously. He deserves a ton of kudos. I would bake him cookies if I lived down there.
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What everybody else said. We’ve got your back, Katie – prayers and good wishes flying your way!
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It’s been my style in my own journey to focus on the results rather than the procedures leading to them. Thus, I will just say “Yippee…you have a diagnosis and relief is on the way.”
Remember, Katie, this about relief, about having your life back, about moving forward to meet all those wonderful goals and dreams you have.
It’s really what you’ve asked for. So rejoice. And trust that you will do whatever it takes to get from here to there…because “there” is where you want to be.
Peace. Joy. Health. And a solid, pain-free future.
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Oh shit, Katie. My stomach’s tightening and I’m freaking out all the way in Tulsa for you. I wish I were closer to give you an IRL hug or something. I’m glad you have a diagnosis, though. Holy crap.
Freak out over. It really is a good thing to know what’s going on. You’ve been through brain surgery before. This time just shave your whole freakin’ head so it grows in all together. I’ll make you some head wraps if you’d like, in soft fabrics, to cover the scar.
I’ll keep praying for you. I pray for you every time I think of you.
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