Archive for the ‘The Brain’ Category

5 Years

Five years ago today, I had brain surgery.

It’s funny how even after 5 years that doesn’t sound any less crazy. I have done a pretty good job of hiding those memories away, the anxiety, the recovery, all of the unpleasant parts, in the very back of my mind. I rarely access them because it wasn’t a particularly pleasant time. I’m a completely different person than I was 5 years ago and so I look back upon that day almost as though it happened to someone else instead of me. Yes, I have the same scar as that girl, but I am a completely different person.

Most of the emails I get from other people with Chiari Malformation always ask me the same questions. First, they ask if I had the surgery (yes). Then, they ask who my surgeon was (he’s retired, sorry). Then they ask how I am today and if the surgery was worth it.

I don’t have an easy answer for those last questions.

I am better today than I was 18 months ago, I am worse than I was 4.5 years ago. I would argue I’m better than I was pre-surgery in most ways. I can laugh and cough and sneeze without feeling like my head will literally explode from the pressure. My balance is pretty average these days and my left hand has pretty good dexterity and strength, though if you measure it, it’s definitely not quite up to par. I don’t have nystagmus anymore and I have days without headaches. But I do still have them. And a few other holdovers here and there.

Was the surgery worth it? Maybe. There are just so many unknowns. Would my Chiari have continued to progress if I hadn’t had the surgery? Maybe. Would I have been able to tolerate pregnancy and deliver Elijah without a c-section? Maybe. Would I be where I am today? Maybe. I can’t say for certain if it was worth it, because I don’t know what the alternative outcome really looks like.

I can say that there were some benefits to the surgery. It helped confirm the career path I was on and have now completed. It has allowed me to connect with and have more compassion for my patients. It has improved my quality of life in some physical ways and has connected me to other people like me, which has further improved my quality of life in a more abstract way.

Yes, I still have headaches. Often severe ones. I am not without symptoms as I had hoped, but they do not inhibit my life like they used to. I’m working, I’m caring for my son. No one I work with knows about my medical history because they don’t need to- because it doesn’t have an impact in the way it once did. If it weren’t for the scar, most of the time it would be as though it never happened.

But it did. And if I was faced with the situation over again, ultimately, I think I would make the same decision, but I wouldn’t make it lightly this time either. Though I realize that not everyone would I agree, I like myself and my life more now than I did then. Much has changed in 5 years, and for that, I am grateful.

Headache Honeymoon

So the first trimester of pregnancy was a time of nausea, fatigue and very few headaches. I’m not going to pretend like the first two were pleasant because that is a bold-faced lie, but the third was pretty kickass. I had about 8 solid weeks of almost no real headaches worth noting. It was beautiful.

The second trimester has been nausea free for the most part, I can now eat both beef AND chicken (mostly), and I have a pretty significant headache every damn day. The first two parts are pretty great, but the third is the opposite of kickass. It is literally kicking my ass.

Sigh. The headache honeymoon is over.

I don’t know exactly what has changed, except hormones and maybe stress, but I do know that these headaches are a real freaking drag. They are pretty much my normal headaches, but occasionally with a migrainous twist thrown in. And the worst part is that I know somedays that my migraine medication would make it go away, only I can’t take it because I love this baby too much for my own good. Literally.

I think what is making it the most difficult to manage is that I had all that time off and so my endurance, my tolerance is down. It’s like if I had a drink right now, I’d be hammered because I’ve been sober for so long. These headaches are knocking me over because I’m not used to them anymore. I was living in baseline pain land, and it is extremely pretty.

I had nearly forgotten how awful it was to be in this much pain all the time. There are some days where Tylenol helps a little (takes the pain from about an 8 to a 7.75), but the moment it wears off, the headache amps right back up. And I’m only taking the Tylenol when I’m really desperate because I don’t need rebound headaches on top of everything else.

It’s frustrating because even now when I’m not drop dead tired all the time and I can actually stay awake and do things, I don’t want to. I just want to lay down and make my head stop hurting, or lay down and wish my head would stop hurting, because that’s usually what happens.

I haven’t found anything that seems to trigger the headaches now and most of the time I haven’t found anything that relieves them either, including sleep, which really sucks.

I’m slowly starting to get worn out by the combination of my work and school hours and these headaches. Work isn’t distracting me from the pain as much as it once did, and the pain is absolutely interfering with my daily activities. I hate admitting that, but it totally is and there’s pretty much nothing I can do about it. My OB didn’t like the vitamin combination that my neurologist recommended, so I’m fresh out of options besides the periodic Tylenol.

I know I can manage this in its current state, but I am worried that it’s going to get worse and there’s going to be a limit to my tolerance soon.

I’d really just like some pain relief. Even if it’s only temporary, hell, even if it’s only for tonight.

Babies and Brains

(That title sounds a little like a zombie’s diet, no?)

Tomorrow I have an appointment with my neurologist. I made the appointment months ago when I was in the middle of a horrible headache cycle. I’m pretty thrilled to say that my head has actually been pretty good for the past month. Apparently pregnancy agrees with one part of my body.

I’m still going to the neurologist even though the headaches are better because I have a few pressing questions for her. And I decided I may as well go now and have these conversation instead of putting it off.

When I was initially diagnosed with Chiari I was told I wouldn’t be able to give birth naturally. The thing about Chiari is that you don’t want to do anything to increase the pressure in your head. And while I have never tried to push a baby out of my nethers, I understand that it takes a bit of force. And that force absolutely increases the pressure in your head. So the worry is that in pushing you’ll be basically also pushing your brain even further out of your skull. That’s not so much a bundle of joy as much as a bundle of holy crap.

My husband, (who’s a practicing neurologist right now) is of the opinion that because I’ve had the decompression surgery and I actually have chronically low intracranial pressure, that delivering a baby won’t be a problem for my brain. I tend to think that he’s probably right (whoa, did I just actually type those words?) I mostly just want the blessing of someone who has looked at several of my MRIs and can give me an objective opinion.

The second part of what I need to talk about is trickier. I have a really rough history with needles in my spine. Every time someone puts one in there, I spring a leak. A leak of spinal fluid, which is NOT something you ever want to leak. So the whole epidural thing is a a bit of a concern. I worry that getting one will result in another spinal fluid leak that will wreak further havoc on my already sagging brain. Simultaneously I worry that there is no way in hell I can give birth to a kid without one.

I have never been jazzed about the idea of them in the first place because I hate being numb so very much, but the thought of the pain is also not all that appealing.

I might also discuss with her if there’s any reason why my headaches would be better now, pressure wise. Obviously there’s a hormonal possibility, but since my headaches were never hormonally charged before it’s hard to imagine that it was driven by that in the first place. I’m wondering if the increased circulation could be a part of the solution, but I realize it could also be about 20 other factors, so hopefully she’ll have some insight.

And if nothing else, it’s another person I’m allowed to actually say, out loud, that I’m pregnant to. Despite spilling it to all of you, I haven’t gotten to say it out loud that many times yet. I know that there will come a time for telling, but it’s still fun in the meantime.

Hopefully this appointment is full of as much good news as the last one. Well okay, since there will be no baby viewing it’s unlikely, but hopefully there will still be good news anyway.

Latest Babble posts:
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This Is Just My Life

I got the MRI/MRV results last night.

I didn’t tell anyone except my husband and a friend. Not because it wasn’t good news, but because it was. They were clean. Nothing showed up.

Nothing showed up.

Please don’t misunderstand me, I wasn’t hoping for a blood clot, I wasn’t hoping for a tumor or something requiring urgent brain surgery. But I was hoping for something. Hoping for anything. Because the thing about a clean MRI is that it’s not always a good thing. A clean MRI does nothing for me. It doesn’t mean that I don’t have unrelenting headaches. It doesn’t mean that I’m suddenly sleeping more than 3 hours at a time. It doesn’t change anything. If anything, it is the opposite of change.

A clean MRI means that we have no plan. It means that we are absolutely no closer to finding a way to slow down these headaches. It means that we are back at square one.

For the record, I hate square one and the fucking horse she keeps riding into my life on.

I didn’t sleep much last night because I kept having dreams about my headaches. Over and over I’d dream about sitting in doctor’s offices and being told that there was nothing to be done. I woke up short of breath, in a cold panic. I realize that this dream may not sound like much of a nightmare, but it is for me. It’s my nightmare, my future.

All day I’ve wandered around in a fog. My doctor told me to call and schedule a follow up appointment, and I put in the call, but have no expectation of being called back anytime soon. (The only way I got the results was to email my doctor and she said that she hadn’t gotten any messages. Yes, that does make me want to scream.) But I also just keep thinking, why even bother?

We know that there aren’t any medication classes that we haven’t tried. We know that we’ve done all the tests. There isn’t really anything left to do. These headaches aren’t going to kill me. They don’t seem to be doing any real damage to my brain (if you let go of that whole brainstem slumping business). There’s just really nothing to be done.

For the last two years I’ve had a headache for every moment of every day. I haven’t had a day off, I haven’t had a night off. There is literally not a moment where there isn’t pain. I know that some of the people in my life think I’m exaggerating. They think that the pain cannot be that bad because I still go to school, because I bake, because I go on vacations. Because I refuse to give up on the life I chose.

I have learned to live with pain. It was not something I ever wanted or hoped to do. It was a necessity. It was the only way I didn’t have to give up on everything I’ve worked for. The pain is very real and if anything, it’s generally a whole lot worse than I make it out to be.

I don’t know what the next step is. I don’t know that there even is one. Right now things feel tired and hopeless. And in a way, I think that’s easier. This cycle of hoping and hurting sometimes feels more exhausting than the pain. Two years of disappointment only intensifies the ugliness of the two years of pain.

I just keep thinking that maybe it’s time we stop trying altogether. Maybe it’s time to stop thinking that this is just a phase. Maybe it’s time to realize that it isn’t something that’s going to suddenly stop.

That this is just my life.

Because I was totally out of things to worry about

I know I didn’t formally update (I hid it in the comments), but my MRI/MRV got moved from when it was scheduled on Wednesday to today. According to the guy who called me, it had to be moved because there wasn’t a radiologist on site to administer the contrast on Wednesday. So they moved it to today and it worked out alright because I was already going to be in the general vicinity. Frankly, as long as it was done before my insurance year started over again on Monday, I was okay with the change.

So I arrived and waited in the waiting room until it was my turn, then disrobed and gowned up to make sure I didn’t die from the zipper on my shorts.

When I got into the MRI room they went ahead and put an IV in for the contrast, which isn’t unheard of, but normally they just pull me out and inject the contrast in the middle of the scan without actually doing the whole IV thing. And then they hooked up the IV to this huge machine with two big fluid containers, and I my curiosity got the best of me.

Me: “What’s that?
Radiologist: “The Auto Injector 2000.”
Me: “Oh. Okay. How is that different from what you guys normally use?”
Radiologist: “From the Auto Injector 1000?”
Me: “Um, no. From a needle in my arm and you pushing the plunger.”
Radiologist: “Oh. Well, this is an MRV so we’re going to give you a lot more contrast quickly with a bolus of fluid and it needs to be timed with the scans.”
Me: “Oh. That sounds unpleasant.”
Radiologist: “…”

So that’s what happened. They sucked me into the tube and about 20 minutes in I got a warning that the first contrast injection was about to go in. It wasn’t too bad, definitely not worse than usual. A little cool going in my arm and I got the nasty gadolinium taste, but totally tolerable. When that scan ended, they did nothing for a while. Which was disconcerting.

After a 5ish minute break, they did a few more short scans, then they informed me they’d be injecting more contrast. And let me just say, holy crap. This was like a metric fuckton of contrast. I wanted to rip the IV out because it hurt A LOT going in. It wasn’t just cold, it was cold and stinging and really freaking unpleasant. And besides that, I not only got the nasty taste in my mouth, but also the all over flushing, feeling like I peed my pants and my tongue tingled for a solid minute. It took everything in my power not to scream to be pulled out because I was convinced I was going to die of something gadolinium related, but I didn’t. I knew that they needed those scans right then to time it with the contrast, so I managed.

Now I need to back up for a minute and clarify something- the reason they decided to do the MRV in addition to a standard MRI was in large part to make sure that I hadn’t developed any clots in the veins in my brain which can happen when you have low pressure for an extended period of time. Clearly clots are not something to be messed around with and until I got ready for the scan, I really wasn’t all that worried.

So in light of that, you can imagine my absolute freak out when the radiologist came to let me out of the tube and goes, “So, uh, have they started you on anticoagulants?”

Gah.

I was told my doctor would get the results in 2 days, so I’ll start calling Monday, but in the meantime I totally plan to spend my time freaking the hell out about potential clots in my brain. Because I was totally out of things to worry about. Whew, that was close. I almost got a mental break on my summer vacation.

Sustainable

A funny thing happened on Friday. Okay, it wasn’t funny, not even a little bit.

I went to a movie with my husband, a movie I thoroughly enjoyed. When the movie ended, I grabbed my phone to see who had called me in the middle of it and the screen just seemed painfully bright. And though I had had a headache all day, it suddenly became more apparent. More really seriously noticeably unpleasant.

Over the next 20 minutes the headache went from ho-hum to holy crap. And by holy crap, I mean literally, the worst headache of my life.

I tried laying flat, hoping that maybe this was a sign that I had an active CSF leak (yes, I realize how crazy that sounds, but laying flat relieves those and I really, really wanted relief). I tried migraine medication because I thought maybe it was a weird migraine. Neither of those did anything. No change, just horrendous pain.

The pain was where it usually is, it was just so much worse.

It was so much worse that I warned my husband that we might be spending the night in the ER because I was scared of what might be going on. I don’t do ERs for headaches, and I don’t take narcotics for them either because they don’t help, but at that point I’d have taken anything that was handed to me.

Thankfully, it didn’t come to that. Eventually I went to sleep and woke up in the morning feeling worlds better. I spent most of Saturday and Sunday laying low, I was scared it would come back. Like a mini-bout of PTSD. It was unpleasant, but compared to the pain on Friday, it was awesome.

I’m trying hard to focus on school, to make it through this week so that I can move on to vacation and relaxing. But these headaches are genuinely starting to worry me. Not because I think anything is horribly wrong, because I don’t. I don’t think that there’s a dark scary underlying cause. But I’m scared because, as my PT put it, this isn’t sustainable. If the headaches keep getting bigger and worse instead of better, I am not going to be able to do the things I need to do.

It’s starting to dramatically impact my quality of life.

I don’t know the next steps. I’m still waiting to get insurance approval for the scan that was ordered, I haven’t started the vitamin A because I want to be done with finals first. And many people have asked if I’ve called my neurologist, but for what? To say, hey, it hurts worse now! Though I’m sure she’d love to spend time chatting, I just don’t see how that would help anything. I just, I don’t know what to do. And I feel increasingly helpless.

I feel passive in my own life. And it sucks.

I know that in the grand scheme of life there are far worse things. But I feel like the grand scheme of my life is changing in a way I do not want it to, and that feels like a pretty bad thing.

Pride Goeth Before the (Grade) Fall

I had a midterm last week. I didn’t give it a whole lot of time because it was open book, open note, open internet. I mean, how does one prepare for that kind of test? That’s right, they don’t. And a few days before the exam I realized that I had never actually turned in my student disability accommodations for extra time on the test. And then I made a really stupid decision.

I never turned them in.

I’m not sure what possessed me to not do it, but I decided I could do the test in the allotted time like everyone else. Even though I had a feeling I couldn’t. Pride is a funny thing. It’s also a bastard sometimes.

The test went poorly. Which is frustrating since I’ve been doing really well in the class discussions (it’s Differential Diagnosis) and assignments. I could tell when my teacher handed me my test back today and realized that the score I got belonged to my ID number that she was surprised. It was bad. I did really quite badly.

It wasn’t because I wasn’t prepared. It wasn’t because I didn’t understand the directions. It was because I didn’t have the time to think through it well enough. It was because my brain was moving too slowly that morning and I could not get done what I needed to. When the teacher called time I had managed to get each box filled, but not well, not nearly as well as I could’ve if I’d had even just 10 more minutes, not even the full extra 60 I’m allowed.

And I just cannot stop kicking myself.

What was I thinking?

Why didn’t I just hand over the paper and take the test the way I’m allowed?

Now I have the final exam for this test on Thursday and it’s going to be a fight to get even close to the grade I want, to the grade that I truly think I deserve based on the work I’ve done and my participation in the class. I have worked so hard and this exam and the score don’t even begin to convey that. It’s one of the worst grades I’ve ever gotten, especially in a class I feel that I understand as well as this one.

And worst of all, two of the instructors of the class are ones who know me fairly well and I feel almost embarrassed. I feel like I let them down, like I look like an idiot. I know I can do better, I know I should do better. I emailed one of them to ask if I could still arrange to get extra time for the final, even though it’s in 3 days and I’m waiting to hear back. I know that there’s a good possibility that the answer will be no and there’s nothing I can do about that. I’ll just have to do the best I can and hope that it’s enough.

And I’ll have to remember this lesson. Remember that it’s okay to accept help, that it’s okay to need it sometimes. And it’s okay to admit that to others too.

Pharmaceutical Guinea Pig

If you’re expecting to read about anything other than my brain this week you will be sorely disappointed.

I went to the pharmacy to pick up my new medications today (she prescribed 2 other supplements besides the Vitamin A) and they had flagged my order as needing a pharmacist consultation. This is nothing new, if I hadn’t just moved, I’m certain the pharmacist would’ve seen me coming and been all, ok Katie, what’s the prescription for this time? I feel like I live in the pharmacy.

But instead the pharmacist came out looking concerned.

He told me that he had never been asked to fill Vitamin A at the levels of my prescription and that he is worried because there are a lot of things that can go wrong when you take this much. He asked me why I was taking it and I gave him a Cliff’s Notes version of my medical history. He seemed to understand, but persisted with his concern. Apparently high levels of Vitamin A can cause intractable nausea/vomiting, neuro symptoms, hydrocephalus and several other things.

You know. No big deal. Who knew a vitamin could be such a problem?

He handed me my prescription but added one request. He asked me if I would come back next month (which, of course I will, I have five other prescriptions to refill) and tell him how it worked out. I’m not sure about the rest of you, but I have never had a pharmacist worried about me, or request a follow up. I think I might officially be a guinea pig. Also, very scared.

The truth is that these medications worry me. In fact, they worry me enough that I’m not going to try them until the weekend. I’m going to take the Vitamin A at night in hopes of sleeping through any ugliness it might cause. The other supplements might cause stomach issues of a different variety, which really, I mean if I’m going to have intractable vomiting, I may as well have the opposite problem too. Why the hell not.

I’m trying to keep my chin up and be optimistic, but damn, I hate the idea that I might have to feel a lot crappier to feel better. I have learned how to cope with headache pain, but nausea and I have never really seen eye to eye, so managing that will be a different struggle for me, silly though it may seem.

I know that some of you are frustrated that I’m so wishy washy about this. I know it seems like I’m being ungrateful. I’ve been offered a fix and I’m hesitating to take it.

And all I can tell you is that it just isn’t that simple. I want to feel better more than anything, but I have learned from many many trials with drugs that they almost never do that. In fact, most of them come with side effects that are tougher to manage than the pain. Most of them don’t fix the problem and it’s really an issue of how long I can tolerate the side effects before they become as much of a problem as the pain.

So please understand that I’m not looking for things to be unhappy about. I’m not looking for trouble, I’m not trying to be pessimistic. I greatly appreciate having so many of you as cheerleaders as we set out on the next phase of this journey through headache hell and I am trying my hardest to find my excitement too.

Remains to be Seen

Today has been a hard day. After yesterday my mind, my moods have been in a constant state of change.

As most of you observed, I am hopeful. I hate that I am because hope has led me no where good yet, but damn, I am. I don’t know that the next scan (an MRV with gadolinium for those interested) will actually show anything, but at least I feel like we’ve got a real, somewhat reasonable plan, for the first time in MONTHS. And I feel like if the scan doesn’t show anything, I can go back to this doctor and she won’t try to toss another band-aid onto these headaches, she’s going to try to find a way to stop them altogether. I don’t know if she’ll ever be successful, but it feels like we’re finally trying to treat the cause instead of the effects. I like that.

On the other hand, I’m scared.

I really, seriously do not want another brain surgery. I especially don’t want it because it will unquestionably derail my schooling. I can barely tell you how hard I have worked to not have to fall back a year in school. I’m not trying to paint myself a hero here, and probably I should’ve given in and gone on a 4 year track instead of staying on 3. But I didn’t. I’ve lost hours studying long after I normally would. Weekends lost to trying to relearn things that I didn’t get to learn in class, that didn’t make sense because I had missed the previous week due to pain or tests.

I caught up. I passed all my classes. I am on track to graduate in May. And the idea that this scan could show what the others hadn’t, and that it could show that this can and should be repaired now? Kind of sucks. In a warped crazy kind of way.

I don’t want surgery. I don’t want to start my next clinical and my fall classes late. I don’t want to be behind ever again.

But on the other hand (I have a lot of hands, okay?), there’s no way I can turn down a fix. If this scan shows a leak, I will have it fixed, almost unquestionably. The quality of my life depends upon it. It would be crazy for me not to. And given that my brainstem is slumping out of my head, there’s no question that physiologically, it would be crazy not to also. I try not to get too dramatic when I can avoid it (shut up, sometimes I try), but your brainstem is essential for your ability to live. I’m not willing to mess around with mine.

And so I wait, somewhat patiently, for insurance to authorize the scan, for the pharmacy to fill the pills. I craft scenarios in my head of what if the scan shows something. Of what if it doesn’t. I find worries where I don’t need them, I push others away. I make plans tentatively right now, knowing that the future is still very much uncertain.

That everything ahead is now unwritten. That it all remains to be seen.

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.

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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