Tag Archives: My Brain Diary

Posts chronicling my progress from diagnosis of an intraosseous meningioma through surgery and recovery

My Brain Diary, Part 14

My Brain Diary, Part 14

And maybe, I hope, the last. Unless something miraculous happens and there are significant improvements or something terrible happens and I need more surgery. Neither case is very likely. Things are pretty well stabilized and my MRIs continue to look good.

It’s still very frustrating that my brain doesn’t work the way it did before. People see me and talk to me and say how amazing it is, they would never know I had a problem. I respond politely because their intentions are good and they can’t possibly know how much more difficult certain things are. I guess it’s a good thing that I have ADHD, because it’s taught me how to accept that I can’t change and figure out ways to compensate instead. That doesn’t mean I have to like it!

The anomia comes and goes. I’ll have days when I’ll forget most of the names of people whose faces come into my head, not be able to tell anyone what a thing I want or am looking for is called, or even identify something I’m holding in my hand verbally. But since it happens so often, I don’t get as agitated when people try to help me by suggesting words (that are often wrong) while dredging through my memory for a connection that’ll bring the word to the surface.

I’ve learned little tricks to work around my still slightly impaired sense of direction. Most of them involve planning ahead. That’s not my forte, but I try. When I don’t, I turn on navigation on my phone. I need to look at a larger picture to get a sense of relative position of everything, so even when I’ve already been somewhere I might pull out a map and spread it out so I can position the place mentally among multiple spots I’m already familiar with.

Since the last Brain Diary, I’ve been to school for Cosmetology and am waiting for my license to arrive any day (week, month. . .) I know, it doesn’t sound sciency at all. You’d be surprised, but that’s beside the point. Learning new things and performing services with my hands was not only great occupational therapy, but also gave me insight as to some particular effects I need to work around that I might not have noticed otherwise. For example, at the beginning, I would need to hold a picture of a hairstyle up to the mirror next to my mannequin head so they were both facing the same way, because I couldn’t mentally flip images. I still have to do some extra thinking sometimes, especially if I’m looking at something that’s asymmetrical, and sometimes I need to have my hands on a head at the same time as I’m looking at a picture. I also need to go very slowly right now to create symmetry, because as I go from one side to another my visual perception and body angle change unless I pay very close attention to altering my posture and directional gaze.

I simply can’t “do the same thing on the other side.” Braiding taught me this in a singularly humiliating way. I needed to find something that stayed the same no matter which hand was working because no matter how hard I tried, I couldn’t mirror what my right hand was doing with my left. If you watch me as I do it, you’ll see that I don’t hold my hands or the hair the same in both hands. The harder I try, the worse I do, and the more frustrated I get. I need to look at it almost as if it were two separate things I was doing. I described it to my fellow students as if I was trying to make a braid on two different heads, one hand for each. (Plus, I need to learn this for each different braid, and there are lots of them.) It was the first thing we learned, and the last thing I figured out. I’m still a ways from mastering it, and if I make up a stunning new design, it’ll be completely by accident!

This distorted sense of spatial relations is even worse on myself. Yeah, everyone says they have trouble doing their hair or makeup in the mirror, but I remember what that was like. It was like what I deal with now when working on someone else. Just like with the map, I need to establish points of reference that are outside myself that I can associate with one another. If the main point of reference is ON ME, that just can’t happen. I have become less inefficient at doing my own hair, but it’s still kind of comical how many different directions my comb and brush will go on different areas of my head and how many things I hit with the blow dryer that are not anywhere near my hair. My style is different every day because I can’t do it the same no matter what. I let people think it’s all creativity, but the most creative thing is figuring out how to get it to look like I did it that way on purpose. More often than not, I had an idea, tried to do it, then pulled out super strong holding products for damage control.

The other things I tried to do on myself were very useful for pinpointing specific deficits. I got it into my head that fake eyelashes would be better than mascara, and spent countless hours trying to put them on, went through three tubes of adhesive, and threw out 8 pairs of lashes and three packs of individuals before I gave it up. Towards the end, I realized that not only does my right eye not close independently without squinching it up tight, but it has weird “blind spots” where I can see colors and shapes but not “understand” what they are. I would finagle my way around getting a lash strip on my partially-open right eye, but when it came to the left, these “blind spots” made it impossible to put one on. I’d try with the left eye open enough so I could see through it, but each time my hands or wrists covered one eye or the other, my “sense of direction” would change. I’d have the strip placed perfectly, say, on the outer corner, but once I moved towards the center and one eye or the other was even partially blocked, I’d start pulling the strip in the wrong direction and sticking it to the middle of my eyelid, the tips of my lashes, or even pulling it off. It was during one of these frustrating sessions that I stopped and just covered and uncovered my eyes one at a time and realized that the world moved in different ways from one eye to the next and made more sense in the left than the right.

Makeup is a bit more symmetrical now, but that also took some training. Initially, I had to use pencils or chopsticks or other long, straight guides to make marks on my face, and even then I would end up with one side higher or lower than the other, farther out, closer together, darker or lighter. I still have to step back frequently because up close the right and left sides are perceptually disconnected. I won’t lie, there have been a lot of tears. When you’ve been doing something for 30 years with almost no thought at all and suddenly it requires slow going and meticulous attention to seemingly superfluous details, it makes you feel impaired. Even if it’s just something as silly as having to give up eyeliner because you can’t draw a single smooth line on your face anymore.

The good thing about this is that with the improved awareness of what’s doing what, I am getting better at accepting and compensating for my new set of neurological differences. They’re not going to change, or they would have by now. So here I am.

My Brain Diary, Part 13

My Brain Diary, Part 13

I went through a long day of neuropsych testing, and it was quite interesting. Obviously, I can’t reveal everything about the experience, because you don’t want people who might go through the testing themselves to know too much. What I can say is that even during the testing, I could tell which areas were giving me particular difficulty – and after the testing, I started seeing some patterns in specific difficulties in performance among different tests.

Some things were obvious. Verbal memory was horrendous. I already knew that I’m having more trouble than ever remembering things that have been said to me, but one test involved repeating a very short story back to the examiner after she read it. On the first go-through, I repeated only the general ideas, and had trouble remembering enough to answer questions about the stories. On the second go-round, I remembered even less, and had trouble answering questions even with prompts. Other parts that required memory were not quite so abysmal, but it was clear that I was having some trouble.

When I went in for the evaluation, the neuropsychologist pointed out that other parts of the tests showed something much more telling – my pattern of answering, and the difference between tests with and without feedback, indicated that I had a big problem with impulsivity that was impairing my performance. Some of the tests were observed and some were just me and a machine of some kind, and the performance differences and the way I responded while observed showed some significant anxiety.

I don’t know if that’s an inherent anxiety, or just the anxiety that’s been overwhelming me for the last several months, but I have to tell you that I thought that I was cool, calm, and collected the whole time.

Some parts of the test were taken from IQ assessments. I performed quite impressively on those – but I’m not surprised because I already know my IQ and I know I’m intelligent. I swear I’m not bragging – it’s just a thing about me that is. But what this meant to the doctor is that my results on the other test segments compared to the intelligence parts demonstrated that I do have impairments that are functionally significant.

We’ve had a couple of counseling sessions, and will continue once a week for a while. Once I have the right medication and get my depression under control, I’ll probably undergo some speech therapy and occupational therapy. Since there doesn’t appear to be any lesions on my brain, there’s a possibility that my brain is plastic enough to re-learn some things.

Patience is not my strong suit. Obviously. But this is sort of like parts of my brain fell asleep from the pressure of the tumor, and the pins and needles stage is going to last for a while. I need to shake it out a bit. And put up with it until things start working again. Also not one of my personal strengths. Since I have no choice, though, I suppose that eventually I’ll learn.

My Brain Diary – Part 12

My Brain Diary – Part 12

I’m trying to think of ways to keep my expectations reasonable and realistic. This is really difficult, because I really thought that the problems I had from the tumor would clear up so much more completely after it was gone. What this means is that when I notice an improvement but still have problems, I get frustrated and depressed thinking of the remaining shortcoming and forget about being happy for what I’ve recovered.

Well I was going through photos and happened to find one from a year before my surgery when I had a grand idea that I was going to use Photoshop to try out potential hairstyles. It was pretty bizarre, because I don’t have too many photos of myself, and the changes I saw in the mirror were gradual enough not to notice. I was shocked at the asymmetry, and no matter how hard I tried to make the muscles in the right side of my face mimic the ones on the left, I couldn’t – and I had no idea why this was happening. I don’t know how long I hadn’t noticed it, either. But anyway, the heck with vanity, here’s a side by side comparison of the photo from November 2011 on the left, and 2/26/2014 on the right.


My surgery was October 12, 2012. 16 months later, you can see that I’m still somewhat lopsided. If a simple muscle function doesn’t return completely, then it’s reasonable to assume that the cognitive deficits are going to fall short of what they used to be as well. I can look at my face and think, “Oh, well, I guess it’s stuck like that.” I think I need to try to change my attitude towards the other things to something more along those lines. I got used to the different face. Even though it doesn’t impact me as much as the different speech and the different memory and the different visual perception, I still need to get used to those being different too. I need to accept them even though I remember what it was like when they were better.

I hate talking on the phone. On the phone, I can’t make gestures to try to get across the word that I’ve lost, and I can’t look it up in Google without breaking up the conversation. I just sound stupid. This is frustrating because I’m just as intelligent as I was before, but you wouldn’t know it if you were talking to me on the phone. In person it’s only slightly better because, you know, I’m forgetting words and playing Charades to try to get you to understand what I mean. This is why those of you who don’t email or Skype me haven’t heard from me in a while. It’s frustrating and embarrassing, and that’s harder to get over than a lopsided face.

The memory and visual perception are easier to deal with, and are also something that the neuropsych will be able to help me with over time. Still frustrating, but easier to use the face analogy to tolerate.

Just complaining. Only a few more weeks before the testing and evaluation. I can show people my droopy face as proof that I’m not stupid, just slightly brain damaged. But not on the phone.

My Brain Diary, Part 11

My Brain Diary, Part 11

Right now is not so good. I’m going to be pretty frank, but I don’t want people to worry. I’ve been through some bad brain stuff even before Roscoe took over my life, and even when I’m close to the bottom of the deep well of suckitude, I can still remember to look up to the light at the top and know there’s a way up as well as a way down.

My medications aren’t working the same way as they did before, which is no surprise. If you look at the early MRIs, there was a lot of compression. Blood supply was rerouted or restricted. Neurons were obviously going to be moving around trying to get past blockages. And the limbic system, where most of our emotions are seated, was pretty wonky from getting pushed out of shape. So this is just like starting all over again from scratch. Cymbalta is too stimulating an antidepressant because it’s a norepinephrine reuptake inhibitor, meaning that my whole “fight or flight” reaction is on higher alert than it should be. I also had to discontinue Adderall for the same reason, and add in Klonopin because my life had become all panic, all the time.

When you’re transitioning from one antidepressant to another, there’s this horrible period during which you’re getting too little of both of them. That’s where I’m at right now. I’m titrating down on Cymbalta – 15mg per day. This is enough to reduce the panic and keep the brain zaps to a minimum, but not enough to affect my depression. At the same time, I’m beginning sertraline (Zoloft) but only a measly dose of 25mg. Not only not enough to even tickle the edges of depression, but also only starting the 4-6 week journey before it shows any effect whatsoever. In a few days I’ll be off the Cymbalta (protip – it’s a capsule full of beads, so if you feel a brain zap, and ONLY if you feel a brain zap, take one or two BEADS. Makes it less awful.) and up to 50mg of sertraline. Still a baby dose, and still at least two weeks away from making even a tiny bit of difference.

So, yeah, I’m in a pretty bad way right now. Fortunately, even when a smidgen of suicidal ideation pops up, it’s easily quashed by reminding myself of the light at the top of the well of suckitude and by making a plan so elaborate (typical ADHD) that I’d decide it was too much effort before I even came close to doing anything about it. No matter what I might say in the throes of depressive misery, you’re not going to get rid of me that easily. Heh.

The whipped cream and cherry on top is the visit to the neurosurgeon. My brain, right now, is about as good as it’s going to get. I’m going to see a neuropsychologist for an evaluation, and probably end up with some kind of therapy to help me adapt to my new neurological paradigm, but I was kind of hoping for normal. Having that hope dashed is not helping with my mood. Yes, I’m way, way better than I was two years ago, but there are things that are a struggle still.

My spatial relations are vastly improved – I have a much better concept of where I am in the space that surrounds me, I have my sense of direction back, and I’m aware of objects around me, both moving and stationary. However, “mirror images,” both literally (myself in the mirror) and figuratively (looking at pictures or looking at other people) are bizarre and confusing. I have trouble telling right from left, and forwards from backwards. Up and down are intact, thank goodness. Blow drying my hair has been an adventure, and I still haven’t quite mastered the art of flossing my teeth without hurting myself. If I look at my MRIs, I have to pretend that they are someone else’s, because their orientation is like a mirror, and they start from the far side and come forward. If I think of them as mine, I can’t get past the idea that my left side is on the right of the image, and the coronal slices as they move from the back of my head to the front are coming towards me instead of moving away from me.

I don’t lose my balance all that much anymore, either. . .but it still happens.

Since the tumor smooshed my left occipital lobe and left temporal lobe, I also have some problems that are related to vision and vision-related language performance. I don’t have any consistent object or color blindness, but sometimes I will look at things, see them, but not really “recognize” them, or know what they are. Quick example – we were at a food kiosk, and I wanted to leave a tip. There was a bright blue tip cup by each cash register. On the one that was right in front of my face, I couldn’t see the word “tips” written on it. I saw only the “s” and thought for some reason that it meant that was a cup for straws. So I reached over and put the tip in the cup on the other side of the kiosk, because I could perceive the whole word on that one. Other times, I won’t see things outside of what I’m looking at because I simply don’t understand why the thing I’m looking at isn’t the thing I want. Really. I look at it, and I think “this isn’t what I want? Why isn’t it what I’m looking for?” and the thing I want is right there above it or below it or next to it.

The most frustrating thing, though, is the anomia. This is where the temporal lobe gets involved. Most of your language processing occurs in your left temporal lobe, and the normal loop between seeing something and saying it involves the visual image that’s processed somewhere in your right hemisphere (depending on what it is) being “translated” by your left occipital lobe and sent into the language loop in your temporal lobe. That’s not happening for me. But only in one direction. If I see an object or a person (or picture an object or person in my head) there’s a good chance that I will not be able to name that object or person. I could tell you everything about that object or person that I knew, except for what that object or person is called. And the name I remember this morning may well be completely inaccessible in a few hours. No amount of prompting, besides actually telling me the word, is going to bring that name into my conscious thoughts.

In the other direction, no problem. If I hear or read a noun or a name, I have no trouble whatsoever picturing that object or person in my mind. But it is kind of a problem – because when I’m circumlocuting to try to use the words I have to describe the word I don’t, people try to be helpful and finish my sentences for me. And once they say the word that isn’t the one I’m looking for, it creates a new mental image that supersedes the one I’m trying to describe, and all is lost. I know they’re trying to be helpful, and I know it’s awfully difficult to listen to me when I’m struggling through this, but really, the only thing it accomplishes effectively is to make me feel like crap and maybe even start crying. Just a heads up. I won’t hold it against you, I promise, but I will probably start to cry.

So. . .I see the psychiatrist in another couple of weeks and we’ll ramp up the sertraline if it’s working OK. I may even be able to go back on Adderall once my dose is stabilized. We’re looking at mid-March here. If you’re worried about my mood, look at your calendar. If it isn’t halfway through March, stop worrying. I’m just transitioning between medications.

February 11th, I go for a consult with the neuropsychologist, and get another dose of reality about how much improvement, if any, I can expect with therapy. Until then, I have regressed to the mean, and everything I just described above is SOP. And that’s just the way it is.

My Brain Diary, Part 10

My Brain Diary, Part 10

So I have seen my neurosurgeon. He is happy. My brain is the right shape, and everything seems to be pretty much where it’s supposed to be. No lesions. The clump of cancer cells left behind out of necessity on my dura has even gotten smaller. He says there’s a possibility that it might even go away – I guess because they aren’t cells from the dura or something like that. I’m not going to complain if they do, no matter what the reason.

What I am complaining about, though, is that I’ve pretty much regressed to the mean – and it’s not a very nice mean.

This is pretty much as well as I’m going to be able to think from now on.

I started off with a substandard memory, and now it’s even worse. Short-term memory is much more impaired than it used to be. . .and that means that forming long-term memories out of those short term memories is impacted as well. There are things that no amount of reminding will come forward. Complete blanks where memories should be. I work hard to remember certain small things, but short of writing them down and carrying the written note with me at all time, they just don’t stay. I constantly have one thing or another to apologize for for forgetting.

One of the memory issues (did I mention this before?) is anomia. That is, I can’t remember words for things. Mostly it’s people’s names and names for objects. Noun loss. Other words will escape me periodically, but this is the most predominant. It works in only one direction, though. Visual input will not produce a word, but hearing or reading a word will create a mental image. So the words are there, I just can’t call them up on demand. When I’m anxious or stressed, it’s worse, and sometimes that makes me more anxious, which makes it worse, and so on, and I have moments of sounding like an idiot. Not cool, brain, not cool.

The other problem is that my medications aren’t working right. My doc wants to try medications that are aimed more at treating bipolar than ADHD, because the Cymbalta/Adderall combination that’s been my favorite over the years is now making me anxious. I stopped the Adderall a few weeks ago, and that helped a lot with the panic, but makes it incredibly difficult for me to concentrate. I have not been able to enjoy reading since stopping it, and I spend a lot of time wandering around the house wondering what I was just about to do. Like, unless I have something in my hand that I can look at that reminds me what I was just about to do, I honest to goodness forget what I was about to do the moment I face a different direction.

I am splitting my Cymbalta so I’m taking 30mg instead of 60, because of the dreams. OMG, the dreams are killin’ me. They are giant, epic affairs worthy of being made into movies. They’re not just in color, but also filled with sounds, smells, flavors, textures, and other sensations, most of them not particularly pleasant. Every morning I’ve awakened feeling exhausted from the stress of the dreams, with my jaw aching and head pounding from clenching and grinding my teeth. Last night I put in a mouth guard to help with this, and was rewarded with a particularly nasty nightmare.

All I can hope is that once the medication issue is resolved, my brain will be static enough that it’ll be resolved with some finality. Until then, I’m nervous about leaving the house (although I’m fine once I finally do) and darn near terrified of using the phone. (Part of that comes from the word loss anxiety. Ugh.)

People tell me that I seem fine. I suppose I appear fine on the outside. I’m much less fine on the inside. I’ll be contacting a neuropsychologist to see if I can learn some strategies for dealing with my new functional issues, and might also need a neurolinguistic speech therapist. We shall see. First, though, I need to work on lowering my expectations to a more realistic level.

My Brain Diary – Part 9

My Brain Diary – Part 9

This is a tiny update, because I went for MRIs yesterday. I chose a few to share with you, similar images from each scan – September 2012, when I was diagnosed with the tumor, March 2013, when I was leaking cerebrospinal fluid and had pressure both inside and outside my skull, and yesterday, pictures for my 1-year (more or less) followup. I still have occasional problems with balance, but this is sporadic. My short-term memory, while it’s never been good, is still more of a problem than it used to be. The biggest issue I have still is word loss – names and nouns. If I see or hear a word or a name, I can immediately picture the person or object, but it doesn’t work in the opposite direction. If I see or think of a person or an object, I frequently have difficulty recalling the name of that person or object. I have no problem with recognition of that person or object, just with being able to recall what to call the person or object. I had read an article about a man who had a stroke in his left occipital lobe that led to the same issue, but I’ll be darned if I can find it again now. Maybe later. Anyway. . . (addendum. . .this might not be THE one, but it is one. . .)

Saggital (back to front – think of Saggitarius, the archer, and the direction he shoots his arrows) views without contrast:

Same thing, with contrast:

Coronal (think of a corona or even a tiara-like crown – this is a vertical side to side view), towards the back where all the problems were:

Axial (horizontal view. I can’t think of a simple mnemonic, so just remember that there’s only one horizontal axis, and that’s the Axial view) showing the cerebellar distortion. If you know what you’re looking for, other views show distortions as well, but if you don’t, then you won’t be able to tell them apart. So here’s where you can tell them apart:

So there you go. Things are looking better. I’ll hear what the neurosurgeon has to say in a few weeks.

My Brain Diary, Part 8

My Brain Diary, Part 8

The one thing that I do notice, still, is the correlation between the amount of fluid under my scalp and my functionality. There’s definitely more fluid back there and more headache and more impairment when weather’s coming in – I know you have the weather predicting sinuses, too, so you know what I mean. I don’t know whether sinus swelling pushes cerebrospinal fluid out of my skull and into my balloon scalp, but it certainly seems like it.

Rarely, I’ll find myself experiencing balance or spatial relations or aphasia issues without the increase in fluid, but most often the two things happen at the same time.

There is a huge amount of frustration involved in the length of this recovery and the limits it imposes. Today is five months from my surgery, and my scalp is so full of fluid that the tops and backs of my ears are numb; the pressure from the fluid in my neck is uncomfortable when it’s not painful, and makes my throat sore; feeling exhausted is the norm, even when I’ve slept 12-14 hours; I still get intermittent aphasia and loss of balance and disorientation.

Don’t get me wrong – things are better. They’re just not all better, and they’re not consistently or predictably better. The night of my last update, we were watching television, and the host said the phrase, “Where’s the beef?” The name “Clara Peller” popped right into my head, and I remembered the story behind it completely. The very next night, I was asking DH to go with me to Costco because I was having some anxiety about the overstimulation for some very specific reasons that I’d already been thinking about during the day. Then I lost the words. The nouns, in particular, and even though I know now that there were other words I could have used that were different parts of speech as substitutes, I couldn’t mentally get past the lost words. Because they were lost, there was apparently no way to find the substitutes, because they were associated with the words I couldn’t find. Of course we’re in public, of course I’m fighting back tears, and of course it’s the first time I’ve worn makeup in ages, and of course I smeared it wiping tears away. That’s a truly minor thing, but at the moment it was the icing on the cake.

My antidepressant is working. The tiny bit of Adderall I’ve started on is helping. I’m cutting back slowly on my alprazolam. The problem I’m battling now is not something medications can fix. Anyone who says “Gee, I wish my doctor would prescribe months of bed rest” is going to get smacked in the head. Hard.

The MRI was. . .interesting. My left hemisphere has clearly stretched itself back out quite a bit, but you can see that the gyri and sulci (the folds and bumps of the brain, respectively) are distorted, and there’s something that looks like fluid accumulation between them in certain areas. My left frontal lobe is swollen or distorted or pushed somehow by fluid, and you can see that it is pushing on my right frontal lobe by the curve in the gap between the hemispheres.

My occipital lobes seem to be quite happy with their new freedom, as my visual perception seems to be working just fine. It’s my left eye itself that’s affected, and I’m wagering that it’s because of the pressure from whatever it is that’s distorting my left hemisphere.

My short-term memory has really taken a hit, but I can remember things when I’m reminded of them. This is an improvement over not being able to recall things at all, but it’s still frustrating to not be able to retain them voluntarily.

Looking at the MRI itself gave me a reference point for the improvement in my spatial relations – before surgery, looking at the scans, it was nearly impossible to orient myself as to what was where. When you look at these scans, it is as if you were looking at another person, with left and right reversed. Before surgery, I couldn’t get beyond the perception that it should have been a mirror image. The axial (horizontal) scans start from bottom to top, and the saggital (back to front, like an arrow shot by saggitarius!) scans go from left to right, and the coronal (side to side, like a crown!) scans go from back to front. I started off looking at this second set having the same difficulty grasping that as I had before, but slowly began to be able to put left and right, front and back, and bottom and top in their correct relative places.

I have to figure out how to compare the before and after shots side by side, but I’m not in a rush to do that right now. The neurosurgeon will have better insight on that come Tuesday.

Well, I’ll be going off to the hospital again. And my hair was growing in so nicely, too! My brain looks good, according to the neurosurgeon, but I sprung a leak between the bone and the new and improved plastic skull assembly. That needs to be looked at and patched, and I need a shunt to siphon off all the cerebrospinal fluid that’s in my neck and under my scalp. It’s not going to go away by itself, and it’s the reason I’m in pain.

The only bad news is really that the pain level for the first week of recovery is going to be pretty bad – but that’s better than living with what I’m feeling now for the rest of my life. The surgery itself is pretty simple for this doctor, and will take less than 2 hours. And he made a note that I don’t respond to morphine, so I’m actually a lot less concerned about the pain, anyway.

The adventure never stops. . .


The Hospital

I got lucky; the first patient of the day cancelled, so I got in before I really had a chance to think about how hungry I was or how much I wished I had gotten a cup of coffee. All the preadmission questionnaires and consults with the assisting physicians and getting IV hookups took about an hour, but it wasn’t long before I was being wheeled into the OR and getting an armful of Versed, which would make me forget everything that happened after they attached the safety straps that would allow them to turn me face down.


I didn’t stay long in recovery, but I could tell right from the start that this thing was going to hurt like anything. They had drained pretty close to a pint of fluid from under my scalp and the back of my neck. In order to press the scalp against my skull, prevent further fluid accumulation, and hold the patch in tight to the bone, they had packed a good couple of inches of gauze rolls against the incision/drained area and then wrapped me in a massively tight turban of more gauze and tape. As soon as my surgeon had seen me, explained how they had ended up doing the procedure, and what I was in for in the ICU, I was rolled up there.


The original plan was to drain 10cc per hour of cerebrospinal fluid through the lumbar drain that had been inserted into my spine. My surgeon was on call, and supervised the first drain. After 3ccs, it felt like a few dozen ice picks had been plunged into my skull all at once. So, new plan of action was to stick with 5ccs per hour, and to drain as slowly as possible. My first two ICU nurses were kind, caring, gentle people who treated me very well. . .day 2 in ICU was pretty unbearable.

Keep in mind here that I’m on a heavy duty opiate for pain, and it kind of sort of takes a little of the edge off. Keep in mind that after a lumbar drain, my pain is so huge that it no longer has an edge. Daytime ICU nursing staff really didn’t consider this much of an issue. In fact, the common procedure was for the alarms and call bells to go unanswered while the nurses talked about the houses they were buying, how many of each kind of baby they wanted, and food.

My IV alarm went off multiple times, and I always pressed the call button, because usually all it needed was to be reset. If I pressed that call button and saw a nurse in less than a half hour, it was a miracle. In fact, I could press that button and see her looking into my room, and she would either continue eating, or walk around to the other side of the nurses’ station. So just for ha-has, I didn’t press the call button – until my IV alarm had beeped 400 times and I was getting tired of listening to it. They would also start my lumbar drain and then leave – and the idea of having more than 5ccs taken out while they disappeared for a half hour or so was pretty frightening to me.

Therefore, it was no surprise that this nurse decided on my second full day in ICU that it was about time I sat in a chair. Immediately after my lumbar drip was done and my head was exploding. Adding insult to injury, I still had a foley in, and she hooked the bag right on my pulse ox wire so my left hand was trapped. I started yelling that I was going to pass out, because, of course, they left me alone in the room like this, and they came in and saw me white as a sheet and drenched in sweat so bad that the dressing holding the lumbar drain came loose and decided maybe it wasn’t quite such a good idea to make me sit up after all. The fact that for a half hour or so after that my pulse kept dipping down into the low 40s and they had to call in my surgeon kind of made it clear this wasn’t something to try again.

The trip down to get a CAT scan was a pretty unpleasant adventure, as well. Hey, guys, that’s a conscious, living human being on that bed who’s just been through major surgery. Do not ride my bed down the ramps and swing me 90 degrees to the left just before we hit the wall, and then whip me around 90 degrees to the right to go through the next door. I am really not here for an amusement park experience. And maybe you could talk to me instead of carrying on a personal conversation between each other, you know, as if you’re concerned about my health and well-being.

The other unpleasant thing was a matter of dignity. This surgery made it so that even the slightest change in orientation from horizontal was excruciating. The pain from the incision and the packing in my neck hurt the back of my head, and the decreased fluid cushion around my brain gave me the stabbing headache in the front. However, at some point, they need to take the catheter out and you have to use a bedpan. My one good ICU nurse was joined by another good one on my last day, and both of them understood that going in a bedpan requires more cleanup than using a toilet – and both of them gently helped me turn over and lower the head of the bed and take care of that, because I couldn’t do it myself. One other nurse didn’t clean up my back and thighs, but at least she changed the pad. The others from the infamous day shift left me minimally wiped, and lying on a urine-soaked pad, which eventually soaked up into my gown, as well.

Upstairs to the regular rooms

This really is a different experience. It also helped that some of the nurses, food service, and cleaning staff remembered me from last time – they treated me wonderfully then, they treated me wonderfully this time. I was there Monday and Tuesday and part of Wednesday, and I didn’t have to worry about my pain being ignored, or not being able to get help to get to the bathroom on time, or my doctor not being called when his directions were needed.

The procedure

So, the surgical cement that had been used to replace the bone that had been removed in my original surgery was fine, but my own bone simply didn’t knit with it in one specific spot. I had been experiencing a pretty marvelous recovery, but then all of a sudden, my scalp started to fill up with more fluid, instead of continuing to flatten out as it had. Then the headaches started, in my forehead and slightly upwards, perfectly symmetrical, and with a distinct margin between pain and no pain. I could have drawn these headaches on my head with a sharpie.

The MRIs showed exactly where the fluid was leaking and where it was accumulating. This meant opening up an incision as close as safely possible to the hole, draining out the fluid that had escaped into my scalp and neck, sealing the hole with the same surgical cement, then using a combination of pressure dressings on the outside and draining cerebrospinal fluid from the inside to keep the new patch securely in place while it cured.

After, the headaches were the same as before, only much, much more intense. My surgeon says that these symmetrical headaches that start around eyebrow level and move upwards are pretty typical of low pressure headaches, and there are investigations going on to see if there’s a connection between “weather headaches,” which have most of the same qualities, and an actual drop in CSF pressure.

Once I got home, I discovered quite by accident that the horrible pain (yes, it was still horrible. Really, really horrible) that hit the moment I started to get vertical, and which became worse the longer I stayed upright, could be mitigated by holding my hands over my head. I will try this trick for other headaches, you can be sure. The only thing that makes the headaches bearable is being horizontal. However, the pain medications are much more effective today than they were even yesterday. Staying horizontal as much as possible is essential to my recovery so that pressure inside my skull doesn’t fluctuate more than necessary.

The weird stuff

So, as I remember, I’m going to try to pass on some information about my experiences. Some things are unique to me, but some are common in brain injury that includes loss of cerebrospinal fluid.

Day one, my dreams were frenetic and without plot or direction. If you’ve ever seen a movie or TV show in which a character is being filled with information from a computer, and it’s just screen after screen of images and characters in rapid succession, that was what I was dreaming. None of it made sense, and there were more images of white screens full of alphanumeric text than anything else. I felt emotionally disturbed by these dreams, even though there was nothing inherently frightening about them. There has been a slow transition between dreams that consist solely of flashing images to normal dreams that are momentarily interspersed with these images.

This could be from the physical trauma of surgery, loss of CSF, or a side effect of the medications. It could also derive in part from the fact that I was being awakened at least once an hour, so it made me remember the dreams more!

Sound and light bothered me, just as they would if I were having a migraine headache. Draining the fluid cushion added another dimension – all the sounds around me seemed to be coming through a drum with a clear plastic head. (Drummers, you know what I’m talking about – it’s a very specific type of reverberation.) The lower the pitch, the more reverberation, and the more painful it was to hear. My surgeon and his PA confirmed that this was related to fluid levels, because it changed how much my eardrums vibrated.

I often felt as if my head and my body were somewhat separated. After the nausea dissipated, I felt perfectly normal from the neck down, restless and ready to get up and move around. When I did, though, it felt almost as if my head were moving through thicker air than the rest of me.

That’s all that comes to mind right now, but I’ll add more as I remember it.

My Brain Diary, Part 7

My Brain Diary, Part 7

Another day of mostly sleep, so far. Over the last couple of days, I’ve been having a little trouble with my balance again. Nothing as bad as before, and it seems to be more physical balance than spatial orientation. Something really weird happened, though, for the first time ever.

I was lying in bed, on my left side with my right arm and leg luxuriously stretched out into the space normally occupied by my darling husband. Suddenly I felt a cat jump up onto the foot of the bed, walk along the edge for a bit, then jump off. Then I felt a cat jump up onto the bed close to my elbow, walk around my hand, up towards the pillow, then jump off. Read the rest of this entry

My Brain, Part 5 – Post Surgery, November

My Brain, Part 5 – Post Surgery, November

I noticed some dramatic changes in November, but nothing miraculous. I was beginning to realize that one of the reasons I hadn’t been able to find medications that worked for my symptoms was that my symptoms were not being caused by my ADHD or Depression. In fact, the tumor had actually been suppressing some of the symptoms, and bit by bit they were coming back with a vengeance.

Read the rest of this entry