This is a continuation of my progress from diagnosis to the day before surgery, and this one contains dates. There is also a link at the beginning to a zipfile of my MRIs, so if you’re interested in seeing what they look like and trying to figure out the connection between the areas of compression and the symptoms I listed, go ahead and download.
9/27
For those of you who are studying neuroscience or merely adventuresome, I have a very large zipfile on Mediafire of my scans.
10/1
Pre-admission testing and pre-surgical consult with the neurologist tomorrow. We’re hitting the home stretch.
BTW, I had to wean myself off of Viibryd. My psychiatrist was pleased that I had figured this out and started splitting my pills and titrating down as soon as I knew I was going to need surgery – not only is it a good thing to eliminate long-acting psychiatric meds from your system prior to brain surgery, but this particular medication has some anticoagulant effects that haven’t been fully studied. When you’re going to have surgery in an intensively vascular area, you don’t want your blood thinned!
Unfortunately, he also wanted me to stop the Adderall completely – not even a teensy bit. Blech.
The most irritating thing about it is that even though I weaned off the Viibryd correctly, and the brain zaps are infrequent and mild, I’m already unbalanced. If I’m wobbling along and I get hit by a zap, I have to grab onto something so I don’t fall over all the way.
This has made me highly inclined to recline. Heh. I’m not a big fan of television, but reading is really tough. (I’ve set the font size on my browser to 18 and shrunk the window so I can read here. Pitiful!) So I lined up some Bollywood movies, and have come to the conclusion that I need to learn Hindi because the subtitles are really tiny. . .
10/1
All that I know right now is that whatever symptoms that I have right now are related to the pressure. I’m thinking that it’s more likely that the ones that developed more recently will ease up or disappear, because the areas that control them were compressed for a shorter time, but that’s not a certainty.
The functions that are controlled or influenced by more than one area should be a little more easily recovered or compensated for once the pressure’s off, and since the cerebellum is a bit more resilient, signals to my body might improve more quickly than my perceptive and cognitive problems.
The thing is that there’s no guarantee that my left hemisphere will spring back to its original form once the space is cleared, and there’s no way of telling how long it will take to do whatever expansion it ends up doing. And until it’s finished, it’ll be hard to tell even with scans what areas, if any, are gone for good. Some will show up on an MRI looking like a darker color (meaning they’re dried up – the more water there is in the part being scanned, the brighter it is) and there may be some empty spaces between the gyri where that brain tissue spread out but didn’t expand to fill the space.
To be honest, all I care about now is having the lump taken out and waking up afterwards. If I wake up from surgery, that’s success, and I’ll deal with whatever happens after that a day at a time.
(BTW, it’s highly unlikely that I’ll die on the table, but from a practical standpoint, it’s always good as a point of comparison, because even a mediocre outcome is preferable to that one, right?)
10/3
Went in for pre-admission testing and then saw the doctor for the final consult and signing of paperwork.
He told me that in his experience, it’s not unusual for certain symptoms to progress rapidly after whatever incident took place that resulted in a diagnosis. This was very good to hear, because my spatial perception is really wacked out, the visual difficulties are much more intense, and I pretty much need to close my eyes when I’m riding in the car because of them.
I’m losing my balance when I walk (usually tipping over to the right) and there’s been a noticeable loss of fine motor skills in my right hand. I like to dry my laundry on the line, and I’m having a big problem with clothespins. I’m having difficulty picking things up and holding them without dropping them.
The language problems have now extended to speech difficulties. I can still talk without sounding particularly damaged, but I’m having occasional difficulty with not being able to say words or being able to say the word only after several attempts with the first letter or syllable.
10/3
He’s pretty certain that he should be able to get everything out in a single procedure, and is almost as certain that there won’t be anything else that has to be done after that (unless they can’t reconstruct my skull right away!)
And let me tell you – sometimes complaining about things gets you places. I vented on my facebook about the insurance company wanting me to spend only two days in the hospital, and just now got off the phone with a rep who saw my status and offered to escalate it so the doctor has an easier time determining how long I actually need to stay!
10/3
Surgery is Thursday – wasn’t it nice of them to give me a date I could remember? 10/11/12. Even though I can’t consistently recall what day or date it is lately, that one is memorized!
10/5
DD#1 is coming home today, and we’re heading out to the beauty supply store so we can dye my hair silver/white, so we’re working on the color theme!
6 more days. If I weren’t counting down to a resolution, I’d be having a lot harder time with this. But what I wouldn’t give right now to be able to take about 600mg of Advil! The pain is not in the area of the lump, but in the front of my head and down the neck and arm running down from it. I’ll be happy to be rid of that, for sure.
The doctor agreed to take pictures of Roscoe when he’s taken out, I just have to remind him and the nurses to do that. There’s a funny idea – me giving other people reminders!
10/7
Difficulty with speech has increased noticeably in the last couple of days. It doesn’t persist, kind of happens in clumps, and isn’t related to the complexity of the words, either. I’m finding that I have to do that word substitution thing mentioned in the description of expressive aphasias, which I hadn’t had as much trouble with before.
I’m also finding that in order to read, I kind of have to line my nose up with the right hand edge of the monitor so that I’m looking at text almost exclusively with my left eye. Perceptually, I don’t consciously notice a deficit in my peripheral vision or object recognition on the right, I just don’t seem to process it.
I’ve tried turning my head when reading to see what happens if I focus on the text using my right eye, and it’s pretty bizarre what happens – I immediately get a sensation like an SSRI withdrawal brain zap (and that might be involved, since it’s been only a couple of weeks since I stopped Viibryd) but it’s almost like a pop between understanding what I’m seeing and not understanding it. It’s there, and I know what it is, but it’s jumbled up.
It reminds me of one of the patients in an Oliver Sacks book (don’t recall which one) who had perceptual blindness because of occipital lobe damage. His eyes worked perfectly well, and he could navigate himself in space with little assistance, but he was functionally blind – couldn’t interpret the information his eyes were trying to send. It’s a strange thing to think about, and even more odd to be getting a taste of. . .
10/9
I was playing around with testing the limitations of my vision, because I want to be better able to gauge the changes after surgery, and I noticed a few things.
I actually can read with my right eye, it’s just harder, and the peripheral vision in that eye is significantly less than in the left. Closing my left eye, it’s like I’m suddenly seeing things through a semi-opaque tube. So some of the reading difficulty is coming from the smaller field of vision that makes it harder to see more than a few words at a time clearly.
Another strange thing is that in my right eye only, I’m seeing “ghosts” of text! If you wear corrective lenses and have astigmatism in one or both eyes, you’re familiar with this effect. However, it usually comes from the conflicting input from the two eyes. This is happening without any input from the left.
On the simple explanation side (pressure on the left side of the cerebellum) my right foot is starting to drop. Not so much that I trip or can’t lift it, but it flops down when I’m walking. I should actually notice an improvement on this and the other motor issues on my right side before anything else.