Enough?
Okay, so I had my follow up appointment with the neurologist today. Which if you’ve ever read here or have ever glanced at my twitter stream, you probably couldn’t help but notice.
The fun began when I tried to check in, only to discover that I didn’t have an appointment. Which is curious because I know I scheduled one and even if I had the wrong date, I know that I made one. And since they had no appointment for me period, I’m sticking to my guns that I scheduled one today and they screwed up. I got a pretty significant guilt trip from the receptionist, but they agreed to see me.
I was able to skip the nurse practioner today (I’ve got nothing against her, but her exam was the most disorganized ADHD set of questions anyone has ever done and I was more than tired at this point) and go straight to the neurology fellow. He asked some questions and then went and got the doctor.
The doctor told me, as I told all of you, that the MRIs were normal. Which, as I may have mentioned before, is kind of a double edged sword. On the one hand, I don’t want anything to show up, I don’t want scary diagnoses. On the other hand, now we have nothing.
Well, almost.
When I saw the doctor two weeks ago, they looked at one of my eyes and saw that one of the borders of something (I want to say my optic nerve, but I’m not sure) was blurry. It wasn’t a huge cause for alarm and I sort of assumed it would either go away or just not be an issue.
When she checked today, it hadn’t improved. It hadn’t gotten significantly worse either, but for whatever reason, this surprised me. I’m so used to having subjective symptoms, ones that I feel but that cannot be seen by a doctor, but this is a decidedly objective finding. It’s not something I whined about. It’s something that was found without my guidance or bitching.
This objective finding led right into one of the things that the neurologist suspected might be the problem. A blurry border can indicate high pressure in my brain, a condition formally called Pseudotumor Cerebri. Don’t panic, it’s not a tumor. It’s just that the brain’s pressure is basically the way it would be if I did have a tumor. Which again, I don’t. (Seriously mom, I promise.)
It does show up on some MRIs, but the idea is that this has been going on for a while and because of that, we wouldn’t expect to see anything. So, so far, it fits. Too well, in my opinion.
So what now?
This is the part where my blood pressure rises, my heart pounds and I need to eat a crapload of flamin’ hot cheetos and cookies. Because the test that needs to be done, that is scheduled for October 6th (but is likely to be moved because I’m supposed to fly across the country for Daisy’s wedding on the 9th), is a lumbar puncture. A big ass needle, into my spinal canal, to see what my intracranial pressure is like. I repeat, BIG ASS NEEDLE into my SPINAL CANAL.
I’m not wild about it.
I need to stop Googling it. That’s for damn sure.
I know that it’s not likely that huge of a deal. I know that the headache that 1/3 of patients get would be a bitch, but hello, that’s my life, so it probably shouldn’t scare me as much as it does. I should be comforted that my doctor said I could drive home afterwards (I’m not). I should probably feel a lot of things about this, but frankly, scared is the ONLY thing I feel right now. Well, and a little like vomiting.
I’m going to call tomorrow to find out about the flying. And you should know that it will take every ounce of non-chicken-shitness to not just cancel the appointment I have and tell them that I’ll call back when I have a better idea of my schedule. And then never call again. Because this is freaking me out. I honestly feel MORE afraid of this lumbar puncture that I did of brain surgery. Like, significantly more.
I’m scared. I’m nervous. I want answers, but I want them without pain and fear. I want them to not come with scary diagnoses and tubing that will drain spinal fluid out of my brain.
I want answers, but I’m just not sure I want them at this cost. When is enough enough? When is it time to quit this search?
19 Responses to “Enough?”
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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.
I’m so sorry. God that’s frustrating. xoxoxo
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I know my opinion isn’t worth much, but I think you should get it. Only because you can’t keep living in the amount of pain that you have been experiencing. I wouldn’t like it either, but that is the choice I would make for myself. Good luck in your decision. I’m glad that they are on the path to something here (finally).
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Oof. Well, I guess it’s time to quit the search when you (a) are able to just function with your pain and have no desire to get rid of it or (b) find something that can be fixed.
(unless that was rhetorical, in which case, disregard above)
I guess these are questions only you can answer. I don’t really know all the details of what you’ve been thru before, but I think deep down you’ll know when you’re willing to stop.
You are very strong and brave…I
would be popping pills like mad and ignoring it all.
Stop googling. Fingers and toes crossed that something brings you relief from pain and soon.
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I’m glad there is something there even if it is scary. The not knowing is always more worrying. I’m like you, too, about anything that puts spinal canal and puncture together. Wish you the best.
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When the pain goes away. That’s when.
And that’s what you want…the pain to go away.
It’s a step in the right direction. Aren’t you more afraid to live with this pain the rest of your life?
You can do this.
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Oh Katie. You don’t have to make any decisions right away. You have time to think about if this is what you want, WHEN you want it. We had to make some similar decisions with Maddie when the doctors were trying to figure out different prognoses with her and it’s SO HARD to figure out when the tests make things worse. There definitely IS a line, but it really sucks that you’re the only person who can decide where that line is.
But no matter what? I will be here for you. I will hold your hand through the puncture if you decide to get it, and if you don’t want it I will support you through that, too!
xoxo
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BIG hugs to you.
It’s your body, and you get to make the decisions. YOU get to decide when enough is enough. Not a doctor.
You can wait, you can not do it at all.
But as a reader, and as someone who gets migraines that are NOWHERE near as painful as what you’ve been dealing with, I know I would go through with it, if it could make my pain go away.
But you are not me, and I am not you. And this is your decision to make.
Either way, we support you.
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This is my first comment on your blog, but I’ve been reading along for a while now. I know that every person is different and every situation is different, but I just wanted to say…. I’ve had the pleasure of having a big ass needle inserted into my spinal column (twice now, actually) and I can honest to God say that, while it wasn’t awesome, it wasn’t awful either. Not in the least. So, obviously, your experience might be different. But I thought that maybe, rather then Googling yourself into a panic, you might like to know that someone had it done in real life and it wasn’t horrid.
Also, I’m so glad you found your doctor and that they are working to find out what’s wrong. I really, really hope the answers come quickly and with easy solutions.
Cheers,
Jen
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I’m sharing this link not to scare you but to help you out in case you experience something similar when you get the LP.
http://fireinmybrain.blogspot.com/2009/09/lumbar-puncture-good-bad-and-very.html
But I say take your time deciding how to proceed. Make sure you feel comfortable with your decision before you force yourself to go forward.
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You need answers, and you need them ASAP.
I have had several LP, for spinal headaches in fact, and while it was not the most fun I’ve ever had it was not the worst. The headache was. I was able to drive myself home and go back to work the next day…hoping you have the same results. You have been through so much…we will all get you through this..;p
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Katie:
I agree, when you’ve had enough, you just know. But besides fear your doctor is providing something else… something new and exciting… hope and a promise to see this through to the end. And she’s already found something. Has a theory. Maybe, eventually, a solution. How exciting is that?!?
I think you stop when there’s no more hope. Thankfully, now is not that time.
*hugs*!
ps… I was going to submit my comment 8 times, just to be funny, but then figured, heck, I’m funny enough already
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Pain is the way your body lets you know there’s something wrong. It’s scary, I know. And it’s easy for me to say “Do it” because it isn’t me, after all. But it will be over. It will ba done and behind you and then, perhaps, finally a reason for the pain will become clear – and fixable.
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You will figure this out & get some answers. That is my promise to you.
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My first question after reading this is what will they do if the test is positive? If there is a chance that something can be done to help your headaches does that make it a little easier to make the decision? If this just gives you a reason for the pain, but no plan for when it is over…well, that may help with you decision too.
Fear sucks and it makes thinking rationally about things difficult.
Pain sucks too.
None of this was probably very helpful, but I’m thinking of you!
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Hey Katie,
I read your blog, but never comment
/
I know what you mean when you say “normal” is a double edged sword… Been there done that! It sucks big time.
I got the worst headaches of my life a couple of months ago. They were so bad I just wanted to be sedated. Trust me, I had a thought for you (for real!)… Since I was sick as dog and they were thinking I had meningitis, I got a LP. Now, I’ve performed several LPs myself (very fun!), but never had one before. It went well. It wasn’t bad at all, the headache was! Now, let me tell you they take a very small needle for LPs, smaller than what they use for bloodwork/IVs and especially epidurals (those are big ones!)!
I know it’s not fun, but The Headache is worse. And you may even have your answer with it, which I hope for you.
Good luck!
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HOLY F LADY!!!! Stop Google-ing you know why! Crap! I would hover somewhere between chronic vomiting and running really far really fast in the other direction! GOOD LUCK!! lo
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ok, I have to admit, this is my first read of your work..and I love it! Your raw insight combined with sarcasm and humor is wonderful! I know you are helping many people with your blog…so sending encouraging words to keep it up sista! hugs to you and your brain!
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I’m stunned, Katie.
This is what my daughter has been going through for 2 years. She has had countless LPs and not one post LP headache. She has had 2 surgeries for shunt placement to help alleviate the headaches and help with controlling the spinal fluid pressure. Most of this is documented on my blog. Right now is good for her…no headache, she is able to work watching kids during the day. She goes back for a recheck this Thursday. Has it been an up and down roller coaster ride getting to this point? You betcha! You know how much I’ve whined to you about it and you were so encouraging and gave me the up yo when I needed it. It is your decision, Katie, but if I am allowed to vote, go for the LP. You can even email my daughter at LittleMissRahRah@aol.com and ask her any questions you want. She is 22 going on 40 after pseudotumor diagnosis and will be glad to share her journey with you. You’re still in my daily prayers.
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First, hooray that it’s not a tumor! Second, and I know this may be a really poor comparison, but it sounds like the LP is comparable to the colonoscopy, in that the prep and fear are far worse than the actual procedure. I fully expect to read here on Wednesday and hear you say that it was nowhere near as bad as you anticipated.
Either way, I’m praying for you.
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