On Monday I went to the Royal Alex hospital for my second batch of MRI scans. The radiologists were nice, the IV of saline and contrast was tolerable, and generally things went smoothly. Strange bursts of headache followed that afternoon for some reason, but they faded and haven't returned. The scans were the trailer, the teaser before the actual content.
Today, I met with my neurologist to view and discuss the images. He saw no visible difference in the dysplasia between the March scans and the June scans, and showed me the images for my own comparison. I agreed with his conclusion. While they didn't look identical, I've come to understand that part of the issue is how an MRI scan is run. Essentially, they scan the brain in layers. If a March scan is seventy-seven millimeters deep and a June scan is seventy-one millimeters deep, the images obviously won't appear identical. Positioning of a patient, angle at which they lie, configuration of the MRI system, all of these things can create minor or medium changes in the images produced by a scan.
I questioned my specialist about some of the particulars of Dilantin, driving, depression, dos-and-don'ts, and drafting my destiny. Many questions couldn't be answered; they now fall into my list for the next visit to the general practitioners, as they are outside the expertise of a neurologist. I did learn that chiropractic visits should be OK so long as they are do not involve the upper neck, calcium will certainly cause some absorption issues and fever/cold/flu will lower my resistance threshold making me more prone to seizures.
In three months I will visit again for another MRI, another consultation with the specialist, and another overall review of my status. If all seems well, the interval between scans is likely to boost to six months. I'm not sure what sort of frequency I should apply with the general practitioners and blood tests, however I have decided to wait a couple of days for the specialist paperwork & write-up to reach their office before calling to book an appointment.
The last three weeks have, for some reason or other, resulted in a full realization of the full scope of my situation and the consequences within. As positive and focused as I was previously, gravity has, as always, leveled my perspective down to facts and foresight. Make no mistake, depression has moved right in. I'm twenty-four years old and I wonder if the rest of my life will involve medication, doctors, limitations and conditions. It's not just a screw-up that I can work hard to solve and bury. The most depressing detail I've come to realize is one he confirmed today: I will not be driving until April two-thousand ten at the soonest. This entire thing is out of my control and there's not a damned thing I can do to address the problem, to solve it once and for all, to put it truly and permanently behind me. I can attempt to treat the symptoms and minimize risk, nothing more.
I feel bad about repeatedly asking friends for car rides to work, to errands, to hockey, to anywhere. They have all been so kind about helping me out, but the longer this goes the more guilt I feel. I wonder if it's time to reconsider roommate life.
Wednesday, June 3, 2009
Tuesday, April 28, 2009
42 may be the answer to life, the universe and everything...
... but 43 was the answer for me. At least, for how many days I could go on 300mg/day of Dilantin without a seizure. Last night I had a simple-partial seizure that progressed into a complex-partial seizure. This happened around 9:30pm while home alone, switching between work calls and household to-dos. I was without language or speech for about a minute, followed by about 10 minutes of confusion. After that, the real fun began: waves of anxiety, fear, and uncertainty about even the most basic of things. The disappointment that has followed today; the realization that these seizures - that which I was so happy to have addressed once and hopefully for all - had broken through both my optimism and medication, has been paramount.
I went directly to the GP's office this morning to ask the unavoidable "Now what?" question. I saw a nice doctor who seemed both concerned and thorough. He's prescribed me another batch, a very large batch, of Dilantin. My instructions are to increase my dosage beginning tomorrow: 400mg/day, with two capsules in the morning, one midday, one evening. In approximately 1 week I am to have blood drawn and testing done, in order to determine what the level of phenytoin is in my system. The target rate is between 40-80. Interestingly enough, the blood tests done a few weeks ago showed a level of 31, yet I received no contact from my GP, specialist, or anybody about it. It appears that the labs believed my level would come right back up, as the tests were done shortly before my midday dosage was due.
So now, it's 24 hours later and I'm sitting at home, when I should be playing out ball hockey with the boys. I've been warned that excess stress and insufficient rest can play large roles in these 'breakthrough' seizures, as such I'm parked in my chair tonight and going to bed early. Yesterday wasn't a particularly stressful day, I found many days last week to be far worse, so I'm not sure how much that affected my evening event. Sleep, especially on the weekends, is turning into a very fine line for me. Between random difficulty falling asleep and recent oversleeps giving me noteworthy morning headaches, I can't help but wonder just how to achieve that ideal amount. My analogy of choice would be Luke in the X-Wing, aiming for the hole in the Death Star. Maybe I just need to relax and let it play out.
Time to watch House and close my eyes.
I went directly to the GP's office this morning to ask the unavoidable "Now what?" question. I saw a nice doctor who seemed both concerned and thorough. He's prescribed me another batch, a very large batch, of Dilantin. My instructions are to increase my dosage beginning tomorrow: 400mg/day, with two capsules in the morning, one midday, one evening. In approximately 1 week I am to have blood drawn and testing done, in order to determine what the level of phenytoin is in my system. The target rate is between 40-80. Interestingly enough, the blood tests done a few weeks ago showed a level of 31, yet I received no contact from my GP, specialist, or anybody about it. It appears that the labs believed my level would come right back up, as the tests were done shortly before my midday dosage was due.
So now, it's 24 hours later and I'm sitting at home, when I should be playing out ball hockey with the boys. I've been warned that excess stress and insufficient rest can play large roles in these 'breakthrough' seizures, as such I'm parked in my chair tonight and going to bed early. Yesterday wasn't a particularly stressful day, I found many days last week to be far worse, so I'm not sure how much that affected my evening event. Sleep, especially on the weekends, is turning into a very fine line for me. Between random difficulty falling asleep and recent oversleeps giving me noteworthy morning headaches, I can't help but wonder just how to achieve that ideal amount. My analogy of choice would be Luke in the X-Wing, aiming for the hole in the Death Star. Maybe I just need to relax and let it play out.
Time to watch House and close my eyes.
Monday, April 6, 2009
The Saga Continues
It's 23 days later and so far, so good. The Dilantin seems to be working well, and although I've had a few instances of "premonitions", no actual seizures of any sort. Just to explain, when I say "premonitions", I mean the odd and somewhat indescribable feelings that have flooded my system whenever I've felt a petit-mal seizure approaching. Thankfully, things seem to be dissipating shortly after the weird vibe, and I return to normal almost instantly. The doctors aren't worried about this, so long as it doesn't bloom into an actual seizure.
I saw my general practitioner today, who gave me a copy of the neurosurgeon's letter to him, as well as my blood test requisition. In two days I'll be heading to Dynacare for the lab work to be done. The concerns are liver and kidney reactions to Dilantin, and as such anyone prescribed with it must go in for somewhat-regular analysis. My GP also mentioned that it's certainly best if we keep the dosage as low as possible, so I'm not to take any more Dilantin than prescribed. If more seizures do begin to occur then the dosage must be ramped up at a very cautious pace, requiring detailed instructions from the doctors.
I mentioned the lingering flu-like symptoms to my doctor, which didn't surprise him. He spoke of a very resilient bug going around, one that can continually bother the throat and sinuses for weeks. It was a bit disheartening, as I've really looked forward to fighting this off, but there's not much that can be done beyond rest and drugs for the symptoms. Oh well.
The gym has been good mostly, although I have felt rather strange after cardiovascular activities. This seems to be fading the more time I spend on it, so I'm hoping that this week's exercise will be enough to return my energy and stamina to normal. With our second summer ball hockey game on the 14th I'm very excited to play, especially after watching (some said I was coaching) our victorious first game of the season. It was tough to watch more than a few minutes... I was longing to suit up and fill the spot for a 6th defenceman.
I went for a walk this evening, as it was a glorious +13C today with basking sunlight, and I was not quite up for another workout. Even when I returned home at 8:30pm it was +12 and calm, which made for a very enjoyable hour in the fresh air. It was remarkable to see how many people were outside - walking dogs, riding bikes, roller-blading, spring cleaning, you name it. Who can blame them, after this abysmal February and March! Me, I can't wait for spring to really set in; between the sunny evenings and warmer temperatures I shall stop at nothing to maximize my time outdoors.
I saw my general practitioner today, who gave me a copy of the neurosurgeon's letter to him, as well as my blood test requisition. In two days I'll be heading to Dynacare for the lab work to be done. The concerns are liver and kidney reactions to Dilantin, and as such anyone prescribed with it must go in for somewhat-regular analysis. My GP also mentioned that it's certainly best if we keep the dosage as low as possible, so I'm not to take any more Dilantin than prescribed. If more seizures do begin to occur then the dosage must be ramped up at a very cautious pace, requiring detailed instructions from the doctors.
I mentioned the lingering flu-like symptoms to my doctor, which didn't surprise him. He spoke of a very resilient bug going around, one that can continually bother the throat and sinuses for weeks. It was a bit disheartening, as I've really looked forward to fighting this off, but there's not much that can be done beyond rest and drugs for the symptoms. Oh well.
The gym has been good mostly, although I have felt rather strange after cardiovascular activities. This seems to be fading the more time I spend on it, so I'm hoping that this week's exercise will be enough to return my energy and stamina to normal. With our second summer ball hockey game on the 14th I'm very excited to play, especially after watching (some said I was coaching) our victorious first game of the season. It was tough to watch more than a few minutes... I was longing to suit up and fill the spot for a 6th defenceman.
I went for a walk this evening, as it was a glorious +13C today with basking sunlight, and I was not quite up for another workout. Even when I returned home at 8:30pm it was +12 and calm, which made for a very enjoyable hour in the fresh air. It was remarkable to see how many people were outside - walking dogs, riding bikes, roller-blading, spring cleaning, you name it. Who can blame them, after this abysmal February and March! Me, I can't wait for spring to really set in; between the sunny evenings and warmer temperatures I shall stop at nothing to maximize my time outdoors.
Friday, March 27, 2009
The Story
On March 14th, 2009, I was hanging out, shooting billiards, and watching the Oilers with many of my friends. We were at Schank's, a sports bar in the west end of Edmonton, while most of my buddies' wives and girlfriends were at a baby shower. It was a good time, I couldn't remember how long it had been since I played 8-ball for hours, and yet it was the same sort of semi-competitive fun I remembered. Unfortunately, things went awry soon after. What had been a relaxing, social afternoon turned into an evening I will never forget.
At about 9pm, sitting on my tall barstool, I listened to a couple of buddies jabber back and forth about hockey. The Oilers game went into first intermission, and an interview with a player was just beginning on the TVs. That was the last moment of Schank's I can recall, and I remember nothing of the next 30 minutes. The next memorable moment was in the back of an ambulance, with a very concerned EMT looking over me. She was asking me basic questions - what's your name, birth date, simple things that should have been easily answered at the worst of times. I stumbled through her questions, answering some, blanking on others, until a brutal wave of nausea hit me. Much vomit left me, and after that I began to feel my wits slowly return. I could answer her questions with a sliver of confidence, and I came to realize that my head was throbbing as though I'd been struck with a hammer.
This was a grand mal seizure, the first I've ever had. From what my friends tell me, I stiffened up quite abruptly on my barstool, and my arms flew upwards towards my chest, almost as though I was punching myself. This happened so quickly that I launched myself backwards, landing completely on my skull and creating a very nasty wound. A couple of other pub patrons came by to help, as my friends try to bring me back up and 911 was called. Apparently, I was very resistant to the paramedics when they arrived, until some friends helped me sit upright on the floor, then I calmed, got onto the gurney, and passed out.
Shortly after reaching the ER, I felt as though I'd mostly returned to normal, aside from the swollen bump on my head and associated headache. The EMTs kept me provided with lots of icepacks, so I was able to bring the swelling down in a matter of hours. I was out in the hallway for about 5 hours before they could set me up in a room. Jay and Darcy stayed with me for a while, and then Dave, trooper that he is, stayed with me through the night and into Sunday morning. Many tests were run that night, including a CT scan on my head and a full chest x-ray. Dave didn't leave my side and I'm eternally grateful for it, as I wasn't sure I'd remember anything said to me by the doctors and nurses, and enough fear was inside me that I didn't want to be alone.
Some time passed in the ER as I waited for a diagnosis. Initially I was told by a med student that the tests showed nothing of concern and they were going to keep investigating. Not long after, the primary doctor of the ER came by with a very grave look on his face and news to match. The CT scan showed a small abnormality in my brain, something a few millimeters in diameter, with a significant calcium buildup in and around it. This was putting pressure on several eloquent areas of my brain, and caused this seizure.
He also mentioned a few other very important things:
- my drivers license has been pulled for at least three months
- I would be rushed in for MRI scans as soon as possible to gather more info
- medications of an anti-epileptic nature would begin immediately
- neurologists and neurosurgeons would be taking over my case shortly
Another doctor came to visit me in the wee hours of the morning, and was very optimistic about the whole thing - he described several effective treatment options for several of the different potential diagnosis, and cheered me up quite a bit. A lot of friends and coworkers visited me on Sunday, and my parents arrived late that evening. I shared the optimism I'd just picked up with everyone. It wasn't just the doctor's positive attitude about things that made me feel better. It was also a bit of the anti-epileptic medications they had loaded in to my IV, but more importantly, the explanation for the 5-6 years of petit mal seizures (previously mis-diagnosed as panic attacks of a psychological nature) that I had been battling.
Sunday evening I was admitted into the hospital and transferred into Nursing Station 33 of the Active Treatment Centre on the third floor of the Royal Alexandria Hospital in Edmonton. There I waited until Wednesday the 18th for access to the radiologists for MRI scans of my head. The scanned me twice that day, followed by a visit from one of the neurologist doctors overseeing my case. The news was not what I had hoped: they don't know what it is, where it came from, or how long it's been there. Based on my descriptions of the petit mal seizures over the past several years, the guess is that it's been slowly growing and developing over time, but at this point it's just a theory. The next step is consultation, reviewing my situation with as many specialists in this field as possible to try and narrow the list of possible explanations, if not reach a definite diagnosis. I scheduled an appointment with the top neurosurgeon, packed my bags, and was discharged on that Wednesday evening. My instructions were to take it easy and set up an appointment for the following week.
I went to see the specialist on Tuesday, March 24th for an update. He's put my file through basically every neurosurgeon, radiologist and neurologist in Edmonton for review and discussion. They can't agree on what this is. Some think it's a benign (inactive) tumor, some think its a bunch of malformed but non-cancerous cells that grew for some reason, some think its a small area of brain tissue that was destroyed by infection, some disagree with all three of those explanations but still don't know what it is. The extremely generalized diagnosis, for now, is cortical dysplasia. That means a group of malformed cells in the brain.
Based on this, they're going to leave me on this anti-epileptic medication, run some blood tests in a couple of weeks to see how my system is reacting to it, and run another MRI scan of my brain in 3 months to see if it's growing or changing. The hope is that it doesn't progress in any way, however the concern is continued calcium buildup. If it progresses I may have more seizures, or if it's significant enough I could be faced with a shorter lifespan. Surgery is not something they want to look at unless this thing starts doing more damage to my brain (either through growth or worsening symptoms), because the chances of damaging very important parts of my noggin are high, and they can only give it about a 50% chance of success at removing all of the problem area and the associated symptoms.
My instructions are to take it easy for now, especially given the nasty cold I caught in the hospital, but try to start resuming some of my normal daily functions one at a time. I'll probably start working 5x8 again pretty soon, then going to the gym regularly, then stuff like hockey. Also, because of the way seizures happen, alcohol basically acts as a lubricant to ease them through, and so I won't be drinking again for quite a while... possibly never again. The minimum was no drinks for 6 weeks, but ideally, none whatsoever until we can gather more info, reach a diagnosis, and then determine if it's feasible. Right now I do have a chance at driving again. If I go three months without any seizures, stay on the medications, show no ill side-effects from the drugs, and show no negative development in the MRI, then my whole situation can be reviewed and the doctors can choose to approve me for a license. If I have another seizure, then I am immediately classified as epileptic, and my chance at ever driving again drops to nearly zero.
So, that's the tale. I plan to continue posting details as they develop, as there are many concerned people asking me how I am doing and where things go next. I can't describe how much I appreciate all of the care and worry that so very many people have shown; family, friends, colleagues and all.
Looking ahead, I'm optimistic once again. I feel extremely relieved that no seizures, even the petit mal (less severe) kind, have continued on these medications - I've been trying to address that problem unsuccessfully for a very long time. My workplace has been very understanding, and I have been allowed to get back into my working habits at a pace I'm comfortable with. I have friends helping me get around town and keeping me company. Things could be worse. A lot worse.
At about 9pm, sitting on my tall barstool, I listened to a couple of buddies jabber back and forth about hockey. The Oilers game went into first intermission, and an interview with a player was just beginning on the TVs. That was the last moment of Schank's I can recall, and I remember nothing of the next 30 minutes. The next memorable moment was in the back of an ambulance, with a very concerned EMT looking over me. She was asking me basic questions - what's your name, birth date, simple things that should have been easily answered at the worst of times. I stumbled through her questions, answering some, blanking on others, until a brutal wave of nausea hit me. Much vomit left me, and after that I began to feel my wits slowly return. I could answer her questions with a sliver of confidence, and I came to realize that my head was throbbing as though I'd been struck with a hammer.
This was a grand mal seizure, the first I've ever had. From what my friends tell me, I stiffened up quite abruptly on my barstool, and my arms flew upwards towards my chest, almost as though I was punching myself. This happened so quickly that I launched myself backwards, landing completely on my skull and creating a very nasty wound. A couple of other pub patrons came by to help, as my friends try to bring me back up and 911 was called. Apparently, I was very resistant to the paramedics when they arrived, until some friends helped me sit upright on the floor, then I calmed, got onto the gurney, and passed out.
Shortly after reaching the ER, I felt as though I'd mostly returned to normal, aside from the swollen bump on my head and associated headache. The EMTs kept me provided with lots of icepacks, so I was able to bring the swelling down in a matter of hours. I was out in the hallway for about 5 hours before they could set me up in a room. Jay and Darcy stayed with me for a while, and then Dave, trooper that he is, stayed with me through the night and into Sunday morning. Many tests were run that night, including a CT scan on my head and a full chest x-ray. Dave didn't leave my side and I'm eternally grateful for it, as I wasn't sure I'd remember anything said to me by the doctors and nurses, and enough fear was inside me that I didn't want to be alone.
Some time passed in the ER as I waited for a diagnosis. Initially I was told by a med student that the tests showed nothing of concern and they were going to keep investigating. Not long after, the primary doctor of the ER came by with a very grave look on his face and news to match. The CT scan showed a small abnormality in my brain, something a few millimeters in diameter, with a significant calcium buildup in and around it. This was putting pressure on several eloquent areas of my brain, and caused this seizure.
He also mentioned a few other very important things:
- my drivers license has been pulled for at least three months
- I would be rushed in for MRI scans as soon as possible to gather more info
- medications of an anti-epileptic nature would begin immediately
- neurologists and neurosurgeons would be taking over my case shortly
Another doctor came to visit me in the wee hours of the morning, and was very optimistic about the whole thing - he described several effective treatment options for several of the different potential diagnosis, and cheered me up quite a bit. A lot of friends and coworkers visited me on Sunday, and my parents arrived late that evening. I shared the optimism I'd just picked up with everyone. It wasn't just the doctor's positive attitude about things that made me feel better. It was also a bit of the anti-epileptic medications they had loaded in to my IV, but more importantly, the explanation for the 5-6 years of petit mal seizures (previously mis-diagnosed as panic attacks of a psychological nature) that I had been battling.
Sunday evening I was admitted into the hospital and transferred into Nursing Station 33 of the Active Treatment Centre on the third floor of the Royal Alexandria Hospital in Edmonton. There I waited until Wednesday the 18th for access to the radiologists for MRI scans of my head. The scanned me twice that day, followed by a visit from one of the neurologist doctors overseeing my case. The news was not what I had hoped: they don't know what it is, where it came from, or how long it's been there. Based on my descriptions of the petit mal seizures over the past several years, the guess is that it's been slowly growing and developing over time, but at this point it's just a theory. The next step is consultation, reviewing my situation with as many specialists in this field as possible to try and narrow the list of possible explanations, if not reach a definite diagnosis. I scheduled an appointment with the top neurosurgeon, packed my bags, and was discharged on that Wednesday evening. My instructions were to take it easy and set up an appointment for the following week.
I went to see the specialist on Tuesday, March 24th for an update. He's put my file through basically every neurosurgeon, radiologist and neurologist in Edmonton for review and discussion. They can't agree on what this is. Some think it's a benign (inactive) tumor, some think its a bunch of malformed but non-cancerous cells that grew for some reason, some think its a small area of brain tissue that was destroyed by infection, some disagree with all three of those explanations but still don't know what it is. The extremely generalized diagnosis, for now, is cortical dysplasia. That means a group of malformed cells in the brain.
Based on this, they're going to leave me on this anti-epileptic medication, run some blood tests in a couple of weeks to see how my system is reacting to it, and run another MRI scan of my brain in 3 months to see if it's growing or changing. The hope is that it doesn't progress in any way, however the concern is continued calcium buildup. If it progresses I may have more seizures, or if it's significant enough I could be faced with a shorter lifespan. Surgery is not something they want to look at unless this thing starts doing more damage to my brain (either through growth or worsening symptoms), because the chances of damaging very important parts of my noggin are high, and they can only give it about a 50% chance of success at removing all of the problem area and the associated symptoms.
My instructions are to take it easy for now, especially given the nasty cold I caught in the hospital, but try to start resuming some of my normal daily functions one at a time. I'll probably start working 5x8 again pretty soon, then going to the gym regularly, then stuff like hockey. Also, because of the way seizures happen, alcohol basically acts as a lubricant to ease them through, and so I won't be drinking again for quite a while... possibly never again. The minimum was no drinks for 6 weeks, but ideally, none whatsoever until we can gather more info, reach a diagnosis, and then determine if it's feasible. Right now I do have a chance at driving again. If I go three months without any seizures, stay on the medications, show no ill side-effects from the drugs, and show no negative development in the MRI, then my whole situation can be reviewed and the doctors can choose to approve me for a license. If I have another seizure, then I am immediately classified as epileptic, and my chance at ever driving again drops to nearly zero.
So, that's the tale. I plan to continue posting details as they develop, as there are many concerned people asking me how I am doing and where things go next. I can't describe how much I appreciate all of the care and worry that so very many people have shown; family, friends, colleagues and all.
Looking ahead, I'm optimistic once again. I feel extremely relieved that no seizures, even the petit mal (less severe) kind, have continued on these medications - I've been trying to address that problem unsuccessfully for a very long time. My workplace has been very understanding, and I have been allowed to get back into my working habits at a pace I'm comfortable with. I have friends helping me get around town and keeping me company. Things could be worse. A lot worse.
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