The 7-years check-up MRI (5 years after the one in 2015) was due in last year but I hadn’t done it because of the pandemic. I got vaccinated in July and finally I got the MRI. There’s no recurrence. Yay.
I’ve had no neurological problems (seizures, attacks, etc.) since my last post in 2018.
The next check-up will be 5 years from now – unless there’s a pandemic in 2026.
I noticed I haven’t written here for 19 months. That’s because I didn’t have any new or major brain issues for 19 months. A summary:
I’m still postponing the second neurological check-up that could be done in order to decide whether I can lower the dosage of Tegretol further, because I’m still scared of that experience of EEG with sleep deprivation and other stimulations that get you close to seizures. I want to do it, but I’m not psychologically ready. My 2018 goal was to lower Valdoxan, and Tegretol can wait for the summer of 2019.
I updated the visual summary. Look at how clean the right side is! (The real daily data for the tapering period will come with the next update.)
Oh, one last thing: I married the amazing woman I met after the surgery, who didn’t give a fuck about the possibility that she had a neurological/oncological timebomb in her hands and who’s been with me through every shitty little red thing you see in the visual summary. She sometimes says she wants to be included in these medical posts and visualizations as a parameter. What she doesn’t realize is that this blog smells of death, fear, and dysfunction to me – and she’s just too beautiful and lively for that.
It’s no secret that I’m a strong believer in medicine and pharmacology, and I can list a few life-changing medicine just from my own mid-length (32-years) life. But how Valdoxan changed my life in the past few weeks is a big story for me because it probably is the most radical and noticeable change in my life, and one that I had no hope of seeing happen.
I have delayed sleep phase disorder: I normally go to sleep around 06:00 and wake up around 14:30. Although I can wake up early with alarm clocks when necessary, this doesn’t mean that I can go to sleep earlier that day; getting little sleep doesn’t change the fact that I cannot sleep before 06:00. So this is not something I can change altogether; this is the way my body wants to live. That’s why some people say that this isn’t really a disorder or an illness; it is simply our natural rhythm. (On the other hand, DSPD is classified as a disability; schools and employers in the U.S. are required, under the Americans with Disabilities Act, to provide reasonable accommodations, including part-time or modified work schedules.)
I hate everything about sleeping. All my life I hated waiting for sleep to come, when the time I “have to” go to sleep comes. (For the last decade it’s been 06:00, to keep at least some contact with the society between 15:00–17:00 the next day.) I hate the tortuous period between when sleep reluctantly reveals itself and when I fall asleep, lasting from 30 minutes to 300 minutes, where I try to play by its rules and dance with it so that it can finally take me. I hate the fact that there is a proper time to sleep in people’s eyes, and they expect you to be asleep and to be awake according to that schedule. I hate it when they propose correction methods when they discover you don’t sleep when they do – partly because they’re expecting me to fit in, but mostly because those famous methods don’t work for me.
Even if I can drug myself to sleep with some (believe me, I’ve tried many) sleep-inducing medicine like Remeron at a normal hour, and force myself to wake up early the next day, my brain just doesn’t play along: it refuses to function properly until its real wake-up times come, causing me to suffer zombie-mode until 17:00 where it suddenly switches on. It’s all great when I live in the right hours, between 14:30 and 06:00.
I don’t know whether it’s related to the tumor or not, but it’s definitely not an anarchistic lifestyle choice; it’s something biological, which puts you in a position to create a compatible lifestyle. Sometimes it’s a blessing, other times it’s a curse. (Like when there’s a construction in your building for two months and you wake up with drilling sounds at 10:30 every day with a few hours of sleep and there’s nothing you can do to sleep early and get enough sleep and your life becomes hell and…) But I had accepted it. I had managed to build a life around it, with a home-office self-employed working mode (this choice is not solely related to my circadian rhythm) and lovely clients who accept that the earliest meeting time with me is 16:00. Everything was under control.
In January I restarted Valdoxan (agomelatine, an antidepressant), as a possible treatment for the mysterious abdominal pain attacks I’d been having, and the strangest thing happened: I started to get sleepy a little earlier every day, and to wake up earlier in the same progression. It wasn’t the classic antidepressant sleepiness/drowsiness side effect; I was perfectly fine during the day. (Valdoxan is famous for not having such side effects.) What’s more, I wasn’t getting sleepy after I take the pill. On my psychiatrist’s orders, I was taking it just before I go to sleep, so the sleep was coming first, not the pill. This was a long-term, general effect: my circadian rhythm was slowly shifting.
I had never experienced such a thing before. Waking up at 13:00 for a few days in a row was a huge difference for me, but it didn’t stop there. When it hit 11:00 it was so unbelievable to me and to people around me that we started joking: “Next week I’ll be waking up at 9 am, before you do, and I’ll be doing morning jogging…” I’m still not doing jogging but I really did wake up at 09:00 today. Normally 02:00 was the beginning of my evening where I was filled with energy to do things, but now I can hardly stay awake to see it. And it doesn’t feel forced or artificial: reminiscent of my early childhood, I can feel the night slowly taking effect, and a very natural and healthy sleep taking over me. I became normal.
On the one hand, this is an expected result: Valdoxan is known to have such resynchronizing effects.
Agomelatine produces strong effects on circadian sleep phase disturbances, improving time to sleep onset and quality of sleep.
https://www.ncbi.nlm.nih.gov/pubmed/21916789A resynchronizing activity of agomelatine was seen in animal models for delayed sleep phase syndrome and in several original models of circadian disturbance, such as rodents infected by trypanosome or old hamsters. This activity of agomelatine on circadian rhythms was further confirmed in humans.
http://journals.sagepub.com/doi/abs/10.1177/0269881108092593
On the other hand, this was my second experience with Valdoxan; I had used it between June 2014 and May 2016 (for other reasons) and my sleep hours hadn’t changed. I found a plausible answer to this puzzle when I remembered what my pharmacologist friend had said when she’d learnt that I’d started Valdoxan back in 2014: My antiepileptic medicine Tegretol (carbamazepine), as a strong CYP1A2 inducer, would increase the metabolism of Agomelatine, a CYP1A2 substrate, and significantly decrease its effects.
In 2014 I was using 800 mg of Tegretol. In December 2016 I started to decrease the dosage of Tegretol. I restarted Valdoxan in January 2017, with 600 mg of Tegretol in the background, and this time Valdoxan was able to do its work. This all makes sense when I consider that 750 mg is some kind of a threshold for me for Tegretol, both for its neurological effects and blood levels.
Living with a normal circadian rhythm is a totally unknown territory for me – one that I’m exploring cautiously. At first I was not sure it was going to last, and was reluctant to accept it as a lifestyle change. But as time passed I started to make arrangements to adapt to this new mode of living. I’m still in the process of getting used to it, and I’m sharing it with more and more people who know me. (I’ll use this post for many of them. Hello.)
Aside from the obvious advantages of having more time with my girlfriend or seeing more sunshine, my favorite difference between my old and new lifestyles is this: normally I check my inbox around 15:00 after I wake up, to find many emails from clients about the ongoing projects. I try to put them in a priority order and deal with the urgent ones before the business day ends (in 2–3 hours). This means that every day I wake up with the urgent question “What do I need to do now? Who needs me?”, face many surprises within seconds, and start working – an obvious source of anxiety. Now, I wake up to find 0–1 work-related email in my inbox. (In the first days it was confusing: “Now what do I do? Go back to sleep?”) I have time to properly wake up, have a nice breakfast, read, etc. before the emails arrive, one by one, during the day. And I increasingly appreciate how great this is and how much less anxiety I experience overall. (Another nice surprise is the 20% reduction of my electric bill.)
I don’t know how long this will last. For one thing, I may have to up the dosage of Tegretol again if neurological problems re-emerge. That will probably decrease Valdoxan’s effects like it did in previous times. Another question is this: Will I go back to my old circadian rhythm if I quit Valdoxan? After 1 year of use? After 3 years? Or will the effects decrease even if I keep taking it? But for now, I don’t want to dwell too much on these questions. I just want to enjoy my new lifestyle for as long as I can. For example, right now it’s midnight and I’m already sleepy. And you probably don’t understand how strange this is.
Last week I had my sixth debilitating abdominal pain attack (since June 2015) which lasted 17 hours and ended with IV painkillers in a hospital at 5 AM. I didn’t write much about them here because I wasn’t sure they were related to the theme of this blog but since all attempts to diagnose them from a gastroenterological perspective (gastroscopy, CT, MRI, blood tests, etc.) have failed, we are increasingly convinced that they are psychogenic.
Here’s a description: The pain is dull, crampy. It starts slowly and builds up to unbearable levels. It radiates to the whole abdomen but its focus is at the upper-center, 5–10 cm below the sternum, and it doesn’t move much throughout the episode, which lasts between 8–20 hours. (Maybe I can say it moves slightly down as hours go by.) It doesn’t let me sleep, eat, work, or do anything else; it ruins the whole day, and sometimes the day after. My bowel movements don’t seem to be affected. It doesn’t feel like a gas/digestion pain at all. And it doesn’t feel like kidney stone pain – I know them first-hand. There are positional differences; laying down makes it worse, sitting in a fetus position (my head down on my knees) is the best. There is no fever, no diarrhea. The first 4 didn’t create nausea, the last 2 did; and at the last one the nausea stayed even after the pain ended, for long hours. Buscopan Plus (Hyoscine butylbromide + Paracetamol) doesn’t work, Arveles (Dexketoprofen) works. Soaking my feet in hot water seemed to help in the last attack (a nice discovery by my girlfriend). All but one ended with IV painkillers at a hospital. I feel abdominal tenderness and occasional sharp pains the day after it happens.
When I look at the food I eat before the attacks, I can’t see a correlation. The starting time (of the day) is also variable. There are cases where it woke me up from sleep, so it doesn’t take immediate conscious anxiety to start it, if it’s really psychogenic. 4 of them happened after stressful events, but there are 2 cases where (I thought) I was stress-free.
The possible relationship between these attacks and my farewell to Valdoxan (the antidepressant I was taking until May 2016 to control anxiety and type 2 seizures) looked perfect if it weren’t for the first attack, which happened while I was taking double-dose (50 mg) Valdoxan. When people suggested that I should restart the medicine, I was reluctant because that one case didn’t make sense. But I was just being careless, probably because I was eager to stay antidepressant-free, a curious state I was in after 13 years. I remembered that I was on 50 mg of Valdoxan that day, and I was misguided by the (data-wise) low-definition graph that I created:
It sure looks like a solid 50 mg going on for months, right? But in those months there were days I decreased the dose according to how I felt, as recommended by my psychiatrist, as an experiment to see if I can quit it. When I looked at the data carefully, I saw that the first attack happened right after I decreased the dosage of Valdoxan to 25 mg; I went right up to 50 mg after it happened, and forgot about this detail. Here’s the full-definition graph (with real data for every single day, as I logged on a self-tracking app) for Valdoxan, with the abdominal pain attacks marked at the top:
When I saw this, the negative correlation between Valdoxan and the abdominal attacks made much more sense, and I was convinced to restart the medicine. I thought I didn’t have anxiety problems for the last year; I was feeling peaceful and stable, and I didn’t have type 2 seizures or panic attacks. That’s why I wanted to quit Valdoxan and decrease Tegretol, if possible. But apparently, Valdoxan was doing some work at unconscious levels of processing.
What about before? Before I started Valdoxan in the first place, in June 2014? Why didn’t I have these abdominal pains before that? Well, there are 7 months where I didn’t take any antidepressants, and before that it’s Cipralex and Remeron all the way back to 2003 (for anxiety, insomnia, and OCD). So I may have been protecting myself against psychogenic abdominal pains with antidepressants without knowing it for a long time. Or they really emerged now, at the age of 32 – maybe as a side effect of the surgery, maybe not. I don’t know the answer to those questions, but I guess I’ll have my answer about what to do in the future in a few months.
—
I updated the main visual summary with the high-definition Valdoxan graph. Unfortunately I don’t have daily data for the other medicine there.
You know that feeling when some stranger you run across on the street looks very familiar, and you struggle to figure out whether you know them personally or they’re someone famous, and it gradually gets unreal because you realize that you feel the same thing for every stranger you see? You probably don’t, because you have a healthy left temporal lobe.
I used to have days like this, 2–3 times a year before surgery (going back to my highschool years), when I was walking on crowded streets. I was saying to my friends, “Today is one of those days, everyone looks so familiar”. It’s a confusing and energy-consuming experience: first, really thinking that you stumbled upon many people you know in a row (“What are the odds?”), and then, after realizing that it’s that same thing happening again (after acquaintance no 7), trying hard to suppress that question “Where do I know this guy from?” continuously popping up as you move through strangers…
I thought that it was some unimportant glitch in my brain. Recently I googled this “problem” of mine out of curiosity and learned that it is a condition called “hyperfamiliarity for faces” (HFF) related to problems in (left) temporal lobe:
Lesions are more often left-sided and involve the temporal lobe. Epilepsy and seizures were present in all 9 cases, suggesting a pathophysiologic relationship, which likely varies among cases. Although only reported in 9 patients, HFF is probably much more common than it is diagnosed.
(…)
Déjà vu (already seen) and déjà vécu (already lived through) are hyperfamiliarity for a present experience with an undefined and often nonexistent past (familiarity without retrieval). They occur during seizures and stimulation of the amygdala, hippocampus, and perirhinal cortex, more common with right temporal hyperexcitability, supporting right dominance in familiarity.
(…)
Déjà vu/vécu and HFF may result from increased activity in right relative to left medial temporal areas. HFF may be produced by impaired left hemisphere identification of unique facial features and excessive right hemisphere processes that link individual faces with emotional and personal meaning, leading to spurious familiarity feelings.
So I’m another case supporting these theses about dysfunction in left temporal lobe leading to HFF. And it feels like the frequency of my HFF attacks decreased after surgery; I may have had 2–3 of them in 3 years.
It’s been a long time since my last post because I had a very (neurologically) stable period for over a year with no type 2 seizures or panic attacks. I had a few more attacks of extreme stomach pains (5 in total, since June 2015) that I mentioned in the last post, and went through many tests every time, with nothing found. I’ve been told by my gastroenterologist that it could be psychogenic; then my psychiatrist said it could be something neurologic, like abdominal migraine/epilepsy. For some time I’d been wanting to see a neurologist to talk about my lack of neurological problems and a possible reduction of Tegretol dosage. It was time.
My (new) neurologist didn’t think that the episodes I dubbed “type 2 seizure” for lack of a better term really are seizures. (Nor did the other neurologists I had talked to before.) She wanted to see a 3-hour EEG recording with sleep deprivation. It was already an extremely stressful week for me and I couldn’t sleep the night before the night I shouldn’t sleep, so I went in as sleep-deprived as I can be – 42 hours, a personal record – which, as I learned today from my doctor, is out-of-bounds for a healthy EEG with sleep deprivation. (So keep that in mind: EEG with sleep deprivation requires a healthy level of sleep deprivation. Don’t overdo it.)
The EEG process was scary for me, not because of all the industrial glue they unloaded on my head [tip: hair conditioner is the way to go, not shampoo], but because I feared that those seizure-triggering evil lights flashing before my eyes with that amount of sleep deprivation could give me my first real seizure 3 years after surgery. (I had EEG with photic stimulation before but not in these extreme conditions.) I was panicking but I managed to do as I’m told (“Now close your eyes.” “Now open them.” “Now close them.” “Now take deep breaths for 5 minutes.” “Here come the lights.” etc.). Then I waited lying 2.5 hours with my eyes closed, trying to sleep. I couldn’t. I can hardly get to sleep in my own comfy bed every day, and trying not to move, feeling the electrodes pushing against your head where it touches the pillow, hearing the EEG operator (a total stranger, there with you in your most private state!) moving around and typing on the computer next to you don’t make it easier at all.
But somehow the 150 minutes felt shorter than it should have – say, 60% shorter. The reason for that is written in the EEG report I got today: according to my brain activity, I was asleep 60% of the time. Not deep sleep, but stage I and II sleep. It makes sense that I wasn’t aware of that. (I wonder how often this is what happens when I say “I couldn’t sleep”.)
A one-minute section of the EEG recordings. The right-hand side of the vertical line is where I sleep, stage II.
My doctor said that the stomach pains are unlikely to be neurological, and with these normal EEG results and my real-seizure-free post-op history, I “deserve” (yes, that’s how she phrased it) to try to reduce the Tegretol dosage and see what happens. I was looking forward to this. Reducing Tegretol means a healthier liver and less (or no) side effects (concerning my legs, my nominal memory, and possibly my WBC count). And thinking that maybe I can drop it altogether in the future makes me happier, because it means, on top of the two I mentioned:
Here’s how it goes. I’ve been swallowing two 400-mg pills every day since March 2014. In a 4-month process, I’m going to use:
If everything goes well and I complete this process with no seizures, another 3-hour EEG with sleep deprivation awaits, in order to decide if we can go further. I’ll start the first month on December 1st to make it easier to keep track.
A snapshot from my very own collection of emptied Tegretol boxes.
I’ve been feeling good for many months, with no type 2 seizures or panic attacks, and I wanted to see if I can live without Valdoxan. I decreased it gradually (taking it every other day), and I’m Valdoxan-free for one month now. I had a type 2b seizure on June 2 (after 9 months) but otherwise I’m doing great, at least neurologically and psychologically – I’ve been dealing with extremely painful kidney stone treatments (extracorporeal shock wave lithotripsy, i.e. torture) and debilitating stomach aches that last for 8 hours (nothing found on examination). At least I can safely say that extreme pain doesn’t trigger seizures for me. So I got that going for me, which is nice.
I’m noticing that my name/word memory is terrible in the last few weeks. I’ve experienced periods like this in the past and I hope this will go away too.
I would also like to note that my chocolate consumption has increased significantly during the last few months. And I don’t want to do anything about that. Shut up. (Is this among the causes or the results of my feeling-good?)
New blood levels for carbamazepine and liver enzymes:
My carbamazepine level (8.0 μg/mL) is the highest ever recorded, well within the reference range (6.00–12.00). The liver enzymes are good too. I’m continuing with the low dose (25 mg) of Valdoxan and I’ve had no type 2 seizures or panic attacks since a long time.
Last Tuesday I had my 2-years check-up MRI. Although I wasn’t expecting any bad news, the procedure of filling in the consent form, going in that machine for 40 minutes, and being injected with contrast material was very stressful, carrying the emotional stimuli from bad days. The report was sent to me on Friday, saying there’s no sign of recurrence. Here are the images from 2 years ago and last week, and the report, below.
On Saturday I went to see my surgeon; he said the next check-up will be 5 years from now. It seems they really don’t expect DNETs to return.
I updated the visual summary to celebrate.
Since I doubled my Valdoxan dosage after the strong type 2b seizures (or panic attacks?) in January, I was waiting for an opportunity – a period where I’m stable and happy – to drop it again to 25 mg/day. That moment came in September; I felt strong enough to do it, and the next week I was in the manic mode. Then came anxiety (especially social anxiety) for one week. I persevered and stuck with 25 mg. Now I feel more stable. Let’s see if I can go on with 25 mg without seizures / panic attacks.
Last month I had two similar incidents of what I would call panic attacks, with different triggers. (One was during a fight with my girlfriend, and the other was triggered by a fear of spending some days alone in our summerhouse which is a bit isolated from civilization – the fear of getting a seizure with nobody to help.) What made me group these two events together (and separate them from my other attacks/seizures) is the fact that even though they started with the extreme feelings of sadness and loss of control like some of my earlier attacks/seizures, both progressed into hyperventilation, trembling (of an arm) and crying. This was a rather unique situation for me for two reasons: (1) my earlier post-op attacks/seizures were colder and calmer (at least from the outside) and (2) for that matter I had never experienced such hyperventilation/trembling (or panic attacks) in my life as far as I can remember.
A wild hypothesis: Looking at my 2-year post-op history, it seems like there’s a progression: first there were (what I called) type 2 seizures, then type 2b’s became more frequent, then they started to resemble panic attacks, and finally they became classic panic attacks. Could this be the story of the restructuring of the pathways of my damaged limbic system?
Yesterday I was invited to speak at a medical symposium. I recounted my medical case along with the visualization on the About page (revealing it step by step) and proposed that this kind of visualizations can help patients and doctors communicate better, have a sharper picture of the case, see correlations and possibly find out cause relationships. (One of the many reasons is this: When you verbally describe your case to the doctors, time is a dimension of the communication. They have to remember what you said in the beginning, relate those to what you say in the end, reconstruct everything in their heads. They may take notes of course (they better), but I doubt a few words on a notepad can compete with a detailed visualization of the whole thing. I am of course talking about difficult diagnoses and treatments where multiple factors are interacting, not the flu.)
At first I was a bit reluctant, feeling irrelevant as a designer and a patient among dozens of professors and students of medicine. (I started my talk with “I’m sorry, I’m very anxious right now because my left amygdala is missing”.) But I got lots of questions and attention afterwards, especially from the students; they were saying that this was the best case presentation they had seen, and information visualization seems like a great improvement that they would want to use in their practice. One of them even recounted my seizure history in order to show how memorable it becomes like this. We talked about possible automated systems that generate these visuals from the medical data being normally kept as numbers in hospital databases. This feedback coming directly from future health professionals made me very happy, and gave me motivation to keep this blog/project going as an example for this line of thinking.
I may start working more on this, and maybe start designing a software that creates these big picture visualizations out of medical data.
Yesterday was physically tiring, mostly for my legs. I walked a lot and had to stand for 3 hours in a cocktail. (Incidentally, I didn’t have any type 2 seizures during/after that 3 hours of heavy socializing.) In the night, when I tried to stand up and walk in my apartment, I experienced dizziness, loss of balance and discoordination of my legs: especially my right leg wasn’t working properly (the knee wasn’t bending and the steps were falling short) and my body was pulling to the right. I was bumping into the walls on my right side. One time I fell to my right side when I stood up and started walking.
There had been times I noticed my body pulling slightly to the right when I was walking, but I thought I was imagining it. Now it seems it was real all along. I read that problems with walking and coordination are amongst the common side effects of Tegretol but I hadn’t experienced something this strong before, even though I always had some discoordination at my feet while wearing shoes, etc. I guess yesterday’s problems were because the extreme physical tiredness has lowered the threshold for the side effects of Tegretol.
Last time I wrote here, I was talking about an exceptionally strong type 2b that I defined as “the anti-orgasm of my damaged limbic system”. Well, I had a few more of them, in times of stress. They are different from type 2b seizures in two aspects: they are much stronger and they last 10–15 minutes. It seems like a new category and at first I was thinking of naming them type 2b2 seizures, but then I started thinking (maybe wishfully) they might be panic attacks without physical (heart, etc.) symptoms.
Here’s how it goes: I’m in the middle of something slightly stressful, a meeting or working, and out of the blue I get intense sensations of anxiety-panic-fear-sadness. My whole reality changes. It grows to a maximum point in a few minutes, so strong that I feel an urge to get up and run. At that point I can’t think clearly. Then it gradually disappears in a few minutes. During all this I manage to stay in control, even to stay in a conversation in a passive way, with great effort. (I don’t know if it’s noticeable to the people I’m talking to.) It’s a way more tiring experience than the type 2 seizures. I’m not 100% sure of this but it seemed in a few occasions that I was able to diminish its power by thinking positive things, thinking that it’s something psychogenic, etc. This is one of the clues that led me to think it’s not a seizure but a panic attack.
When I did some research I saw that there’s a literature on the topic of diagnostically distinguishing panic attacks from simple partial seizures (example, example, example), and that amygdala damage is of course related to panic disorder. In a situation like mine where it doesn’t lead to a complex seizure, the only way to be sure is an EEG recording during the episode, which is hard to get because I don’t have them everyday and I don’t think it can be triggered easily. (I know, for instance, that photic stimulation doesn’t work with me – didn’t work even before surgery.)
I saw my therapist (who’s a psychiatrist by training); he also thinks panic disorder is more likely with the details I gave him, and we doubled the dosage of the antidepressant Valdoxan to a 50 mg/day. I’ll see my neurologist too if it continues.
My hypothesis about performance/socialization anxiety triggering type 2 seizures is getting stronger.
I hadn’t had any type 2s since the beginning of November when I had a very social schedule and one public presentation (see previous post). Last week I had to give an important talk and I experienced a few weak type 2a and one type 2b seizures during the week before the talk. I managed to give the talk and socialize with dozens of people before&after it without type 2 seizures. After the event ended, we had dinner with the organizers and some friends, during which I had an exceptionally strong type 2b which lasted 10 minutes. Then nothing more, to this day. That last one was an outlier since type 2 seizures are weaker and last much longer (around 1 hour). It was like the anti-orgasm of my damaged limbic system.
This might be the biggest performance/social stress I had since the surgery and I’m glad I was able to do it with this small amount of problems.
For the past week I had a very busy schedule, with speeches, meetings, dinners every day. In two of those days where I had to socialize for hours with different people, I felt a weak type 2b seizure in the aftermath. One lasted 4 hours, during which I was quite dysfunctional.
It had been 4 months since I last had a type 2b. After this reminder I’ll try to scatter social interactions as much as I can: only one meeting a day, no long hours of socializing on consecutive days, etc. Let’s not go hard on my poor right amygdala.
No, not on drugs.
I want to record something I’ve been experiencing for a long time, to make this a more complete case study, in case it’s related to my tumor.
I’ve been noticing, since around 2002, that when I trip over something (usually the stairs) I lose consciousness for a short moment. I trip, I skip a few moments and come back. When I come back I find myself making exaggerated body movements to keep balance, opening my arms violently, etc. It’s embarrassing, but I didn’t think much of it. (And the frequency of my tripping could be higher than normal as well; that may be another symptom.)
When I describe it to people around me, they say it’s not something they’ve experienced before; so I think that maybe it has something to do with my tumor, though I couldn’t find any sources relating amygdala to such motor functions. (It continues after the surgery.) If you’re reading this and have an explanation, please let me know.
Numerous imaging studies have confirmed the amygdala as prominent within a neural network mediating specific phobia, including arachnophobia. We report the case of a patient in whom arachnophobia was abolished after left temporal mesial lobectomy, with unchanged fear responses to other stimuli. The phenomenon of abolition of specific phobia after amygdala removal has not, to our knowledge, been previously reported. (from Neurocase, and New Scientist for the story)
Could this be why I’ve had a close relationship with and a near-total lack of fear towards spiders and insects all my life? Because my left amygdala was damaged by the tumor?
Yes, it’s more than a lack of fear; I love them, read about them, watch documentaries about them, and this may seem like an academic interest, but the fact that people always freak out when I grab a spider/insect with bare hands and let it walk on my arms while I examine it suggests that there is something different with my natural emotional responses as well. Am I just being brave because spiders/insects grab my interest, or does my left amygdala damage have a role in this?
Three days ago, something I feared ever since the surgery happened: I forgot to take my Tegretol. I found out that I didn’t take my morning dose (15:00, 400 mg) when I saw my pill box around 23:30, some four hours before I normally take my second dose. There had been times I forgot it but remembered after a couple of hours and took it, but the prospectus says that you should skip the forgotten dose if you’re closer to the second dose, so I didn’t do anything this time and took my second dose when the time came.
Forgetting a pill may sound trivial but since this is an anti-epileptic and I had some bad times before settling on the right dosage (800 mg/day), this was a first and important (unintended) experiment for me. I was anxious, but I had no seizures afterwards. The only out-of-the-ordinary thing was that I experienced a solid headache for a few hours the night after, but I don’t know if it’s related or not.
There was a time I considered having a tattoo saying “Tegretol” made on my hand so that I don’t forget my doses. (Below is the first of the sketches I had tried with a marker; the next versions were smaller and better positioned than this.) I was very close to doing it but I skipped because I thought that seeing it there all the time could affect my mood badly. Now it seems it was not that necessary after all – though I can revisit the idea if I start forgetting it more frequently.
I recently learned that the psychiatrist who checked me the day before surgery at the hospital told mom (when he got out of my room) that it was highly possible that I would lose my “creativity” after surgery. When mom told me about this conversation a few days ago (15 months after it took place), she added she couldn’t have cared less about my creativity that day when we were facing brain surgery for a tumor of unknown nature, and she wisely chose not to tell me about this prediction in order not to influence me after the surgery.
I don’t like the word/concept “creativity” and I won’t claim I possess that overrated power, but whatever I got before surgery, it seems I have not lost it. Seems to who? First, me. I have done lots of commissioned and personal work/writing in this 15 months and have not experienced any struggle, impairment, “creativity blocks”, etc. (The February–June period where I wasn’t efficient because of type 2 seizures is a different matter.) I can even list specific moves in the work I’ve done that can easily be categorized as “creative”. So my experience of working/writing is no different than the old times. That’s a good thing for my experience, but could it be that I lost my game and I’m not aware of it? That I’m delusional?
Here I trust feedback from other people and how well I function within the network. Yes, you cannot measure creativity but my partner, my clients and other people who see my work are more than happy with it. Who knows, maybe I really have a 17% decrease in that undefinable magical force of creativity but from a functionality point-of-view, everything’s alright. And that’s good enough for me.
New blood levels for carbamazepine and liver enzymes:
My carbamazepine level (5.90 μg/mL) is at the lower threshold, which is not a problem according to my neurologist, since I’m not having any seizures.
The slight increase (4–5 IU/L) in the liver enzymes could be due to the fact that I started Valdoxan after my last blood test.
Psychologically I’m doing great as well. I’m in the manic mode, doing a high amount of both personal and commissioned work after a long time. I have energy, motivation and I can concentrate on things because I’m not constantly having/expecting type 2 seizures like the old days.
I had emailed this project (Brain Issues) to my surgeon; he said what I’m doing is very important for science and he wanted to meet me to talk about it and about my condition. I met him yesterday. When I told him that my post-op type 2 seizures are very weak compared to the pre-op seizures, and that they disappear with 800 mg of Tegretol, he was very relieved. “Because” he told me, “when I learned that you’re still having seizures, I started to consider taking out your hippocampus too; it was healthy and I didn’t want to take it out in the surgery, but if your strong pre-op seizures were continuing now, I was going to offer taking it out.”
Phew.
Two weeks ago I had huge trouble falling asleep and staying asleep. My psychiatrist proposed that I buy Redepra 15 mg (mirtazapine) instead of Remeron 30 mg (mirtazapine) because I can split it and swallow 7,5 mg so that I won’t experience the terrible side effects I had with Remeron in February. (Reminder: we’re trying mirtazapine because I happily used it for ten years before surgery without any problems.)
At first it was okay. It made me sleep like a drunk baby, and I didn’t have the huge mood difference and concentration problems like the last time. But in a few days, I lost nearly all emotion, just like the last time. My girlfriend, whom I deeply loved two days ago, was like a regular person now. It felt terrible. I couldn’t feel much, but I could feel how terrible this was. It wasn’t drowsiness, it was apathy. I had experienced this same effect in February. I called my psychiatrist and asked if this was some first-weeks effect that would disappear. He said no and told me to drop Redepra right away, and to double the Valdoxan.
My emotions came back after I quit Redepra. The incident in February was somewhat ambiguous for me to put the blame on mirtazapine, with type 2 seizures going on; but this second trial made it very clear that I shouldn’t use mirtazapine in this new condition of mine, with one amygdala missing and Tegretol flowing in my system.
My sleep problems are not so bad now, and if they ever get worse, I will definitely be searching for other solutions/chemicals than mirtazapine.
It’s been a month since I restarted chocolate and I had only one type 2 seizure (for which I have a different hypothesis). So it seems that chocolate wasn’t responsible for the seizures – at least not directly; I still believe it may have some facilitating effect, lowering the threshold for some other factor’s effects, because the fact that my last episode of type 2 seizures ended the day I quit chocolate looks too good to be a coincidence. An alternative explanation is that that day was the day when my Tegretol increase from 700 to 800 mg/day took effect after 10 days – but that sharply, from seizure-every-day to nothing at all? The previous episode had ended gradually after Tegretol increase, not in one day like this.
Anyhow, I won’t push it with just one instance of correlation. Chocolate looks cleared. (For now…) [I’m squinting my eyes.] My three remaining suspects for triggering type 2 seizures are stress (performance anxiety), socialization, and decision-making.
And if you don’t count that one in the bookstore, I’m seizure-free for 2.5 months now. Yay.
I can’t do it. Try as I might, I cannot keep my promise to myself (and to my loved ones) that I won’t do any headbanging when I go to metal music shows. Normally I have a strong will; I was able to quit eating chocolate (a serious addiction of mine) just like that. But when I hear a riff I love, I say “fuck my brain, I can die here” and I let it loose. It’s stupid, it’s impulsive, it’s not like me. (I find it interesting because this may be the only place where I let myself behave totally impulsive.)
I’ve read in various sources that headbanging might injure the brain, especially if you have an existing problem. I imagine that having had tumor excision is kind of an existing problem. After yesterday’s Metallica concert where I failed miserably to resist headbanging and then spent another night in total regret waiting for a brain hemorrhage, I decided not to attend any metal shows from now on. It’s sad for me, but I have to do it as a precautionary measure. And Metallica is a good end to it.
Yesterday I had the type 2b seizure (without the smell aura) after a long time. It started when I was in my favorite bookstore, trying to select the books I was going to buy. Suddenly I felt terribly and inexplicably bad; anxiety and fear and sadness. I got out of the bookstore, sat in a café and ate. I tried to read but it wasn’t a good idea. It lasted for about an hour, and towards the end something about amygdala popped up in my mind: it was an important part of the decision-making process.
Decision-making is a complex process that requires the orchestration of multiple neural systems. For example, decision-making is believed to involve areas of the brain involved in emotion (e.g., amygdala, ventromedial prefrontal cortex) and memory (e.g., hippocampus, dorsolateral prefrontal cortex). (…) Decades of research have shown that the amygdala is involved in associating a stimulus with its emotional value. This tradition has been extended in newer work, which has shown that the amygdala is especially important for decision-making, by triggering autonomic responses to emotional stimuli, including monetary reward and punishment. Patients with amygdala damage lack these autonomic responses to reward and punishment, and consequently, cannot utilize “somatic marker” type cues to guide future decision-making. Studies using laboratory decision-making tests have found deficient decision-making in patients with bilateral amygdala damage, which resembles their real-world difficulties with decision-making.
There I was for longer than an hour, trying to decide how many books I was going to buy, which ones, and whether to have them shipped or to take them with me in my bag which was full to the brim. “If I buy these ones, then I shouldn’t but this one, but these ones are small, so maybe I can put them in my bag. But maybe I should buy this one too, and then they won’t fit in the bag. But I already read that one. I’m only buying it because I don’t have a copy. Maybe I should do that later. But if I wait, maybe I won’t be able to find it. Okay, maybe today will be the day to buy books I’ve already read but don’t have a copy of. That may be the strategy for today. But I really want to buy that new book…” This is a snapshot of what I go through in that bookstore. I can only imagine the workload it puts on my poor right amygdala who’s trying to handle every decision by herself, and the disturbance it causes around the excision area where my left one used to be, with all the pathways supposed to go in and out. (My left hippocampus, mentioned in the quote above, is damaged too because of the resection.)
Then I remembered one of the last times when I had this same emotional attack without the auras, this strong. It was after we played a traditional Turkish table game (called “Okey”) with friends for hours. Then, I had thought that the reason was that I had to socialize for hours. (The role of amygdala in socialization is obvious.) But now, I think that the reason can be the decision-making (or a combination of both), lasting for hours during the game.
So I have a new hypothesis in hand now: Long stretches of intense decision-making may be causing these types of seizures.
But was this the first time I had a long decision-making episode in a month? Maybe. I had days where I worked extensively in the last weeks but, now I recall, the types of work I did in this period didn’t involve much decision-making; they were chores for long-time clients.
Or, I did have long decision-making episodes, but they didn’t cause problems because I was chocolate-free. I restarted eating chocolate a few days ago, and this may be related to that.
It’s been 45 days since I quit chocolate and haven’t had any type 2 seizures. Today I’m starting the second phase of the experiment by restarting chocolate. If the seizures restart, then I’ll assume they’re related to chocolate and keep chocolate out of my life. If they don’t, I’ll keep eating it, though I don’t really crave for it – I feel like I’m detoxed.
I was not very happy because of the new seizures in general, and last month I had a breakdown because of a lot of other things going wrong. My therapist prescribed Valdoxan (agomelatine, a melatonergic antidepressant); after hearing my struggle with my old friend Remeron, he chose this one probably because it is a new generation drug known to have very few to no side effects. I started on June 10 and it seems to be working, without any side effects. After a long time, I’m in the manic mood, doing personal projects all day.
A few days ago when I boarded a plane, there was a weird smell around which brought me close to a seizure. When I asked the flight attendants, they said that the smell was the result of the chemical sterilization of the toilets and should be gone soon. Seeing that I was very uncomfortable, they offered wet wipes. At first I was suspicious, but when I put them on my nostrils, I was immensely relieved. A friend of mine had speculated that, if there were smells that can trigger seizures, there may be some smells to stop them. I think the smell of wet wipes is a good candidate for that. Since then, I tried them on other occasions of disturbances, with success. Now I’m always carrying a package with me.
This is my fifth consecutive day without a type 2 seizure. It’s been months since I had such a long period without seizures; I’ve missed it. Two hypotheses:
Being a brain tumor survivor, I notice an interesting bug in how people around me think of it: they think I’m cured – not only from a possible cancer, but neurologically and psychologically cured too. They feel I’m no longer different than a regular, healthy person. This is because of various combinations of three reasons as far as I can observe:
With tumor excisions from other organs, I imagine that being called “cured” or “healed” would be more accurate. (I’m thinking of a benign tumor like mine; this whole post is not about cancer.) If you take a 2 × 2 × 2 cm piece out of the stomach, for instance, it will heal itself and the person can be called “cured”.
With the brain, however, things are different: it is a much more complex, heterogeneous and high-definition organ (in that you have more functional structural information in the same amount of space) that is incapable of reconstructing its parts. A tumor already messes up millions of connections between neurons, thus creating neurological and psychological problems; and when you remove it, that part (and maybe some more, to ensure total removal) will be gone forever, leaving you with (maybe different) neurological/psychological problems. (For one thing, damage in temporal lobes creates a tendency for epileptic seizures. This is why I have to take anti-seizure medication probably for the rest of my life.)
You can think of it like this: the brain has different organs of itself dealing with different states/functions of mind (sometimes in single and usually in concert), and when you take a 2 × 2 × 2 cm piece out of the brain, you’re taking out some organs for good. My left amygdala, already damaged with the tumor and supposed to deal with the processing of memory, decision-making, emotional reactions, and smell-processing among other things, is gone for good. (The one in my right hemisphere is compensating now; if you take that out too, I’m in serious trouble.) Small parts of my left parahippocampal gyrus and hippocampus which play important roles in memory encoding-retrieval and spatial navigation are gone too. So it is very probable that I had and will have some trouble with these functions. [Yes, the brain can sometimes reassign (remap) some functions to its other (remaining) parts thanks to neuroplasticity but this process has lots of limitations – the younger the patient, the better it works. I believe I was lucky enough to have some nice remappings because apparently my tumor started when I was young and grew very slowly. There are also heroic efforts by scientists in making the brain regrow the missing parts using doublecortin-positive cells, still in animal testing stage, which may change the lives of many brain-damaged people in the future.]
So the tumor is out, I’m (hopefully) cancer-free and I look good from the outside. But neurologically and psychologically speaking, I’ll always be somewhat damaged.
When I say this, it sounds like I’m complaining about the resection. No, I was already damaged because of the tumor; I’m grateful for the surgery, happy to be alive, and I will compensate thanks to my healthy right hemisphere, the medication, and the help of my friends and family. I just want people around me to acknowledge reality about me in particular, and correct their thinking about the brain in general.
With 700 mg/day of Tegretol, the side effects with limb control had mostly disappeared, but the type 2 seizures have restarted, with increasing frequency. I’m having them usually in the evening/night, lasting for about 40 minutes. I also started to distinguish two types of them:
I reincreased Tegretol to 800 mg/day on May 16, but they continue with increasing frequency; I’m having them nearly everyday now, and I can’t really enjoy anything. My professional and social life are suffering from this.
I’m trying to find correlations to get me to possible triggers, so that I can avoid those triggers. One thing I’m suspicious of is socialization: it seems I’m having the type 2 seizures if I spend a lot of time interacting with multiple people. It is no secret that amygdala plays a big role in social interactions, and I may be having seizures because the single amygdala I have cannot handle it and/or the damaged areas around my missing left amygdala are misfiring.
Another more generic, obvious and boring suspect is stress. I am having a stressful month because of a project, and that may be the reason why I’m having seizures. (The previous episode of seizures had started in February when I was stressed about visiting a friend in military service, facing past traumas – though it continued long after those days were gone. And by “stress” I mean operational stress (or performance anxiety), not sadness; my dear grandma died in November and that didn’t create any seizure activity.)
Before I was diagnosed with the brain tumor, I was busy being diagnosed with mild psychological disorders which got stronger as years went by: general anxiety disorder, social anxiety disorder, obsessive compulsive disorder. The strongest component of my OCD is my hygiene obsession, which gave me hell after the first days of my (compulsory) military service, causing full-day jerks in my limbs and hallucinations of cockroaches on the walls, and got me out with an “unable to do military service” report, alongside my other disorders. I was using Cipralex (escitalopram, an SSRI antidepressant) since the beginning of 2012, which helped a lot.
I have delayed sleep phase disorder: I go to sleep around 6 AM and wake up around 3 PM. Although I can wake up early when necessary, this is not something I can change altogether; this is the way my body wants to live. (That’s why some people say that this isn’t really a disorder or an illness; it is simply our natural rhythm. On the other hand, DSPD is classified as a disability; schools and employers in the U.S. are required, under the Americans with Disabilities Act, to provide reasonable accommodations, including part-time or modified work schedules.) I also have immense trouble falling asleep, because my thinking doesn’t stop; I found the solution in popping 15 mg of Remeron (mirtazapine, a noradrenergic and specific serotonergic antidepressant) before going to bed for the last ten years, which probably also helped with my other conditions. (I’ve tried other things in this ten years, and every time turned back to Remeron.)
I have bipolar tendencies, with short episodes: I do have manic episodes of days where I talk too much and feel an unusual urge to create things, and I can very easily fall to the bottom if a few things go wrong, losing all hope and motivation for anything, which again lasts a few days. (I’m not claiming I suffer from full bipolar disorder, but I find myself at the extremes more often than people around me.)
Wow, how fucked up am I? Not that much. I have arranged my life the way I want, and I’m a highly functional creative professional. (I’m not bragging, this is all medical.) I have my own company with a partner, I work home-office, and I sleep and wake up whenever I want. Although I’m definitely not a people person, my social life is more than okay: I have enough friends and we do things. I do lots of personal projects, play instruments, write, etc.
And now comes the news of the tumor on my left amygdala, probably there since I was a cute embryo, explaining a lot of it:
Some studies have shown children with anxiety disorders tend to have a smaller left amygdala. In the majority of the cases, there was an association between an increase in the size of the left amygdala with the use of SSRI’s (antidepressant medication) or psychotherapy. The left amygdala has been linked to social anxiety, obsessive and compulsive disorders, and post traumatic stress, as well as more broadly to separation and general anxiety.
Amygdala volume correlates positively with both the size (the number of contacts a person has) and the complexity (the number of different groups to which a person belongs) of social networks. Individuals with larger amygdalae had larger and more complex social networks. (…) It is hypothesized that larger amygdalae allow for greater emotional intelligence, enabling greater societal integration and cooperation with others. (Wikipedia)
The doctors had said that the surgery could make my obsessions go away, but that hasn’t happened so far – not that I’m disappointed; these things have been parts of who I am for years, and I don’t want to just get rid of them like that. (Maybe it’s for the best, because obsession is an important tool in my profession.)
They had also said that the surgery could improve my memory. The opposite happened: I had an excellent name/word memory before, and now I have serious trouble remembering names or fetching words sometimes, though this may well be a side effect of Tegretol. (Again, I’m not complaining, just reporting. And maybe I will experience improvements in other types of memory.)
Some people close to me had hoped that the surgery would make my sleeping hours go back to normal. That didn’t happen either. Take that, you lousy conventional sleepers! Leave us alone!
What changed positively? I can feel a decrease in my social anxiety, and I can sleep without Remeron now. (And let’s not overlook the possibility that these are related to my Tegretol intake.)
It seems my type 2 seizures have stopped. I am decreasing Tegretol to 700 mg/day (with my neurologist’s notice, of course), to see if I can get rid of the side effects (dyskinesia) without seizures starting.
My new carbamazepine levels (7.30) after going up to 800 mg/day look good. We also looked at the liver enzymes, which also look good.
Although the dose increasing period was difficult with drowsiness and mood swings, the type 2 seizure frequency has dropped significantly. I started experiencing some side effects with this dosage: my hands are shaky (much more than they normally were) and I can’t exactly control my legs: they make weird movements and jerks (dyskinesia) only when I try to do something with them, like wearing shoes – a little annoying, but nothing compared to seizures.
My surgeon had told us to come back for a check-up MRI after two years, but with these new seizures, we didn’t want to take any chances. I went there with mom and my girlfriend; it was very stressful for all of us, to get in there and go through the 45 minutes procedure with a bad outcome (the recurrence of a tumor) looming in our minds. It was not like a regular check-up MRI because I had new symptoms.
The results were ready today, with the report: “Left medial temporal total mass resection; no residue/recurrence.”
This may be the most beautiful sentence I’ve heard in my life, and the report will be on my pinboard for some time.
Until last month, I had absolutely no problems regarding the tumor/surgery. It was like it never happened. I traveled a lot, got a seaside vacation in October and swam, did a lot of work, bought a new guitar and a table tennis table for my living room, and got a beautiful girlfriend. I had quit Cipralex by the end of October, and I was totally functional – maybe more functional than I used to be: my social anxiety was decreased, and I was much more willing to try new things.
But during the week of February 17, seven seizure-free months after the surgery, I started to have weird types of seizures. The ones before surgery were very strong but lasted for about 60 seconds; these new ones are very weak, like a background noise, but last for about 40 minutes. I feel the disturbance around my nose-eyes, very slightly, and I get the inexplicable feelings of anxiety, fear and sadness, deep down. If the pre-op seizures had a power of 100, these are around 15; but they are very annoying because they last so long. I don’t know if they have a name in the literature (the doctors I spoke to haven’t specified any); I’ll call them type 2 seizures to avoid confusion.
I also started to have immense trouble falling asleep, like the old days before Remeron. After a day when I couldn’t sleep until 10 AM, I decided to restart Remeron, on February 22. The classic first week drowsiness was much stronger than I expected, especially when you consider my long (ten year) history with mirtazapine. I even had this very problematic reaction the first day, where I felt terrible and couldn’t think properly and concentrate on anything, not enough to even have a conversation. (Now I think it could also be a type 2 seizure combined with drowsiness.) But I persevered, knowing that the first weeks of antidepressants are usually problematic.
My perseverence could last until March 5. The effects hadn’t decreased; I was feeling awful all day, drowsy, angry, sad, apathetic towards my girlfriend, meanwhile struggling with these new seizures. Mom told me to drop Remeron at once, and use Xanax to sleep. That was a wise move indeed; somehow my new state of brain structure and chemistry wasn’t working good with Remeron, my friend of ten years, and I felt the improvement after quitting it. I was able to fall asleep with Xanax when I needed help.
I had my carbamazepine (Tegretol) blood level checked, and it looks like I should increase the dose: it’s 5.50 whereas the reference range is 6.00–12.00.
I first thought this could be why I’m having this new type of seizures, but I’ve been having this same dosage (400 mg/day) for the last seven months. Something changed. (I was having some stressful days when the seizures started, and one may think they’re related.) In any case, I should be within the reference range, so we’re going up to 600 and then 800 if necessary.
Today I visited my surgeon to give him a present: a 70 x 70 cm canvas print of an artwork I prepared with images from my pre&post-op MRIs and the microscopic photograph of my tumor at the background. I also put some specs from the medical reports at the bottom left, barely visible, to remind him of the details of the case: my name, the type of the tumor, etc.
He loved it, and hanged it on the wall of his office right away, in place of some other thing. He also said he wanted to put this in some book he’s working on.
It felt weird and so good to get in that room and talk about such things, chatting, having fun.
Today, two months after the surgery, I went to the hospital for a regular check-up MRI which took one hour. My surgeon looked at it and said “Everything’s great. Get on with your life now. You can come for a check-up MRI after two years.” I had a bet with mom on this; she had said 3 months, I had said 6. Two years was great news.
He warned me against getting little sleep and drinking too much alcohol, to avoid possible seizures. He reminded that the anti-seizure medication (Tegretol) will go on for years (and possibly all my life). When I asked, he answered that the small solid bump on my forehead’s left side (where they had cut open) will stay there, and no hair will come out of the scar line – I am totally okay with this; I love my scar. (It isn’t visible if I don’t cut my hair too short.)
You can see below my brain before-after surgery. The one on the right is from this new MRI.
In fact, I already got back to my normal life; I even started working. Everything’s great. (I just started Cipralex after a small breakdown on August 10.)
The days of recovery at home were mostly fun. The pain/headache were minimal, I was offered great breakfast and meals by mom, people were visiting, I had a cool scar on my head, and most importantly, it was done! The tumor and the surgery were things of the past now. I hadn’t died. And I didn’t seem to have any cognitive damage. In retrospect, my biggest problem in this whole post-operation period was the challenge of restarting pooping; intestines go to sleep too in anesthesia and it takes some time to wake them up, especially after lengthy operations like mine. My Google search told me that it could take one week, and one week it was.
As for Cipralex and Remeron, I took the chance of not restarting them. There’s a lot of change in my brain, structurally and chemically (Tegretol), and maybe I can live without them from now on.
Seven days after the surgery, July 31, when we got the bandages off for a bath.
Few days after they took the stitches off, August 5.
They called from the pathology unit today, and confirmed that the tumor was a dysembryoplastic neuroepithelial tumor, a benign, slow growing type, which requires no radio/chemotherapy.
They demonstrate essentially no growth over time, although very gradual increase in size has been described. As expected prognosis is excellent and even though these lesions are often incompletely resected, tumour progression is uncommon. Additionally even in cases of incomplete resection, seizures frequently cease.
Congratulations go to the experts who wrote that this looks like a DNET in the report for my second MRI.
We knew that I had this tumor for at least 10 years since I had my first seizure in 2005, but apparently it was there all my life:
Dumas-Duport et al. considered the tumor to be at least partially neoplastic and argued that these lesions formed during embryonic development. Dumas-Duport’s argument that DNETs had embryonal origins was four-fold. First, these tumors exhibited multiple cell lineages that could arise from multipotent cells present during early development. Second, these tumors manifest early in life. Third, there is often an adjacent bone deformity, which suggests that the tumors are long standing with an early onset. Finally, the presence of cortical dysplasia implies that these lesions occur during cortical formation and are not neoplasms that arise within normally developed cortex.
The original paper describing DNETs focused on the theory that these tumors had embryonal origins. However, it was clear that their clinical course differed from that of tumors classified as embryonal tumors of neuroepithelial origin. Tumors listed in the WHO classification scheme as embryonal are all considered WHO grade IV lesions (Table 1). Thus the term dysembryoplastic was coined to indicate both the origin of these tumors and the observation that they share features with less aggressive, dysplastic lesions. (from Barrow Neurological Institute)
Below are the detailed report we got, and a microscopic photograph of the tumor I got thanks to my surgeon.
The surgery lasted six hours and it went great; they went in with left pterional craniotomy (see below) and removed the tumor in total. My left amygdala (what’s left of it from the tumor) and parts of my left parahippocampal gyrus and hippocampus were gone.
I stayed one day at the ICU, of which I have scattered memory. I remember trying to relieve a post-op girl moaning and crying somewhere in the room I can’t see, by shouting good things. Yes, shouting is a weird way of relieving someone, but I wasn’t totally conscious then. I wasn’t in pain – in fact, I was in a good mood, and I cooperated well with the nurses. I even helped them with some things. And look how fabulous my dress was!
As you can see, the only problem was that my face was blurred, and it hasn’t healed to this day, but it doesn’t have any serious health implications, so don’t worry when you see other photographs of me here.
The day after surgery, they did another MRI to check things, without any problems revealed. Then I was transferred into my normal room where I spent two days, again in good mood, before leaving for home.
During my four day stay at the hospital, all the doctors, nurses and staff were amazing; always smiling, talking (really talking to you as a person, not automatically chatting with a patient), making jokes, lifting me up. It was an interesting hospital indeed.
The tumor is removed, but since my brain is structurally damaged for good (it won’t fill that space up with a new amygdala), I’ll have to take Tegretol (carbamazepine) two times a day to prevent seizures for at least a few years, probably all my life.
This is how they opened the window in my skull (craniotomy), and why you see the huge scar line in my photographs; that line is not cut through the skull, it’s just a flesh wound! (image from Neurosurgery, by Mr. Andy Rekito)
I was admitted to the hospital the day before surgery. They did a battery of tests and their own MRI. A nurse filled a huge form by asking me questions. (She at first frowned with surprise and then smiled when I answered “I don’t have one” to her question “What is your religion?” We assumed they were asking this for the procedures in case I die there. Or maybe they wanted to see if they could filter my blood through a pig, like on House MD. No, I have no problems with that.)
A psychiatrist talked to me to see if I have any withdrawal symptoms from Remeron/Cipralex. ( I didn’t.) There were times when I had attacks of anxiety, lying on bed and waiting for this day to end; I have a very personal relationship with Bach’s Air on the G String and I closed my eyes and listened to it on headphones in those times. The amount of peace it creates in me was, once again, unrivaled.
I spent the night in bed with my brother next to me, looking at a laptop. I don’t remember how I fell asleep.
The exact hour of the surgery was uncertain; it depended on the conditions of the other surgeries of the day, they had told us. But early in the morning they came and woke me up: “Are you ready?” Interestingly, I was. (“I’ll be fucking sleeping, are you ready?” Seriously, when I think about it, this whole getting myself ready and saying how good I did afterwards becomes a joke; I’m just a stupid object here, drugged and put on a table, while the doctors and nurses and others are doing all this amazing, nearly impossible work of first taking pictures of my brain without touching my skull, then making me sleep, cutting my head open, removing some piece of my brain, and close it back, without making me bleed to death or get infected. I have absolutely no contribution in all of this. Unless staying still in the MRI machine counts – yep, that’s a tale that will be passed on to future generations, how still I was…)
I changed into the surgery outfit they gave me, and they pumped the mighty Dormicum (midazolam) in my body. I was looking forward to that moment since the day before, because I remembered what Dormicum does from the minor surgery I had years ago: it turns you into a neutral observer. You see everything around you, but you don’t feel a thing. They put me on a stretcher, and then in an elevator. The amount of medical staff around me was increasing every moment, they were constantly talking, and I was seeing their chins from below. Then we reached the operating room; the sight I was fearing to see, with the table, the cutting tools, the lights… I didn’t feel anything. I was just seeing, thanks to Dormicum. They put me on the table, asked me some trivial questions, hooked me up to the IV lines, and I was out.
I was going to have brain surgery. And then we would know if the tumor is benign or malignant, if I was going to have radio/chemotherapy, if I was going to die soon or not. If I don’t die at the surgery.
The first days after my diagnosis, I couldn’t stand being in a dark room by myself, so my brother slept in the same room with me with lights on. My regular antidepressants Remeron and Cipralex were forbidden now until after surgery, and I was taking Xanax to sleep; I was refusing taking it during the day because I wanted to think clearly – think on what is happening, on what to do, etc.
Apart from the horrifying fact that they were going to cut my head open and mess with “me” directly, there was the problem of my phobia of anesthesia – an instantiation of my general phobia of losing consciousness. And I really needed therapy for that. It would be great if I could at least solve that problem myself, to make space for the other more serious problems in my head (no pun intended).
I had tried, years ago, EMDR therapy before a minor surgery that I had, with success. That therapist wasn’t around anymore, so I found another one and started it. We didn’t have much time and we did a sped up version of it; since my situation was somewhat extreme, my lovely therapist made some self-sacrifice, doing extra sessions at 22.00 to fit more in. In addition to the EMDR sessions, we also made some therapeutic progress as we exposed some of the psychological sources of my fear of surgery. And it helped a lot. I was so calmed down that the last days before surgery were like normal days for me.
Needless to say, my friends and family were always around me, and I watched a lot of movies and stand-up comedies in those two weeks, to keep myself distracted. One day, we went seeing White House Down in theater with my family. It was about some terrorists attacking the White House and the action was a nice distraction for us – until it turned out that the leader of the terrorists, a retired chief of security at the White House, was doing all this because he had a golf ball sized inoperable brain tumor! At first we tried to absorb the tension without looking at each other; then we just started laughing. It was like “No. Even watching action movies will not make it go away.”
My mom, a neurologist, wasn’t happy with the quality of my MRI, and she arranged another one at some other facility. We went there after meeting our surgeons. This one took a lot more time – around 45 minutes; 10 minutes with contrast material – and for good reason. Here were some pictures worthy of my brain – although the tumor certainly looked scarier with more quality.
And more importantly, on the report they prepared, they were speculating that the tumor was likely to be a DNET: a dysembryoplastic neuroepithelial tumor which is a benign, slow growing type. That was some good news, even if it was just an educated guess; we would have more reliable information about the tumor after it was removed and examined under microscope.
After a day of crying, panic and anger, facing my biggest fear, in the morning we stormed to see two different surgeons, with my mom and my brother. This was all so unexpected that I was refusing the idea of getting surgery; I had agreed to go see them only to get more information about the tumor.
The first one we saw was a little too realistic for that state of me, stressing the complications of the surgery, repeating the fact that the tumor is close to a major artery, etc. When we left there, mom barely convinced me to go see the other surgeon. I wanted to go home – not home, exactly, since it wasn’t safe either. At that time, there wasn’t a safe place for me in the whole world. I was carrying the threat with me – inside me, right at the center of “me”.
We had to wait a lot to see the second surgeon, and that one hour of seeing other surgery candidates/survivors with MRI results in their hands getting in and out, crying and hugging their relatives, wasn’t exactly what I needed to see. Right when I said “I’m going home, you go see him with the MRI”, they invited us in. Fortunately, this surgeon was just the man I needed to see at that time.
The room was big and cosy, with plants, comfy sofas and large windows letting lots of sunshine in. He looked at my MRI result and said, with a smile, “Yep, there’s a small tumor there, and I can remove it easily. No biggie.” Suddenly I started to get interested in this whole surgery idea. He picked up an elastic brain model from his desk and showed me the region: “It’s here, which is a very easy location to reach; see, I don’t even have to cut anything else to get there.” He explained that the tumor is on my amygdala, adjacent to the olfactory areas and itself a contributor in smell processing, which is why I was having smell-generating seizures triggered by smell. Meanwhile he kept his smile on, oozing comfort and relief. I started to ask questions.
— Will you cut my whole head open, removing the top of the skull like a cap?
— God, no! We’ll just open a small window on your left temple. And the scar will be above your hairline. You’ll look just like you do now. [I wasn’t really interested in my looks – I asked this because the thought of having my whole brain exposed is very disturbing to me.]
— Will I be awake during the surgery?
— No. There are people who prefer to do it that way, but that’s a different school. I don’t prefer that.
— Do I shave my head?
— No, we just shave the part we need to cut, after you’re anesthetized.
— How many days in the hospital?
— Four/five days. Then you’re home. And back to your normal life after a few weeks.
— What will change after the surgery? Cognitively?
— That’s hard to say, but I don’t expect much. There may even be positive changes; your obsessions may go away, your memory may improve.
— What if I don’t get surgery? What if I live like this? It seems I’ve been living with it at least since 2005, according to my seizure history.
— Yes, and that’s a sign that this is a benign tumor, growing very slowly. But there’s always the chance that it turns malignant, and we don’t want to take that chance. Plus, your seizures are getting more frequent, and every seizure damages your brain a little.
— Do I have to do it now? How much can I postpone?
— You don’t have to do it right away, we can wait a couple of weeks. But not more than that, if you ask me.
Okay then. A couple of weeks to get therapy for my phobia of anesthesia.
In my second visit to the hospital, I first had a blood panel and an EEG with photic stimulation, which, surprisingly, showed no problems. The next day I had my MRI done at another facility, which lasted 15 minutes – they said they were going to call and share the results in a few days.
When they called after three days, it was to reinvite me for a new MRI session with contrast agent, without talking about the results. They just said they needed to see some parts clearer. I bought the agent from a pharmacy and went there, clueless. I really wasn’t expecting anything; I thought it was just procedure. This time, they stopped the machine after 10 minutes, injected the contrast material in me and went on for another 5 minutes. They handed me the results some thirty minutes after the session.
On the paper they gave me, it was written that I possibly have a low grade cystic glioma – some kind of brain tumor. My brother was with me.
This is the records of my partial seizures that I started keeping in February 2013. The kinds of seizures are described in the table, but I can add a few details here as well.
I can feel the seizure (mostly triggered by an external smell) slowly coming for a few seconds, with a terrible feeling that is a mix of panic, fear, anxiety and some disturbance in the nose in the areas where you feel the smell. Then this mix of feelings increases suddenly and I feel like I’m dying. A very strong feeling of smell/ache spreads around the upper nose and eyes, I’m cut off from the world, I cannot talk, I want to throw up and move constantly. I don’t lose consciousness, although there’s been a case where I didn’t remember the details of what happened afterwards and one where I had a dream-like confusion. The seizures usually end suddenly. I also noted the medicine I take regularly for other reasons – to be able to sleep, to control my general anxiety disorder and obsessive compulsive disorder.
The first seizure had happened back in 2005. I precisely remember that day because it was the first morning of my internship at some big corporation. I was confused after it happened – didn’t understand what exactly happened, and thought of it as a one-time glitch in my brain, probably because of the lack of sleep.
Throughout the years I may have had a few more until the one in May 2012, but I don’t remember the details, because they weren’t nearly as strong. (As a person who’s always been interested in medicine and the brain, I knew that phantom smells can be symptoms of brain tumors. And as a person who’s always been a hypochondriac, I should have had my brain checked years ago. But the fact that a brain tumor was my biggest fear nearly all my life was enough to silence the hypochondriac and make me live happily in denial. It was all alarming when I had a small bump in my testicle, but something implying a brain tumor? No, thanks. I’m good.)
After the seizure in February 2013, which was a little too strong and long to deny, I finally decided to take it seriously, told my mom – who’s a neurologist – about it and we went to the hospital. After an EEG with photic stimulation (where they flash lights right in front of your eyes to trigger seizures) which showed no abnormality, we were told that there was nothing to worry about. Mom proposed that maybe we should also get an MRI – you know, because I may have a tumor close to the olfactory areas deep in the brain since my seizures are triggered by smell, which is why your EEG that mostly gets information from the surface of the brain doesn’t show anything and photic stimulation doesn’t trigger anything? (No, mom didn’t utter these words.) They said no – it wasn’t necessary at all.
It was after June 26, 2013, when I had three seizures in four hours with no triggers, that we said “There may be something to worry about – we’re getting an MRI”.
Brain Issues 