So now that this is mostly caught up with the last three-and-a-half years, I think I'm going to spend the rest of however long this lasts chronicling everything that's going on as it's happening. I never wrote any of this down when it was happening; I either couldn't remember it long enough or I was in so much pain that I didn't care. I had the medical details down well enough after speaking with what felt like a thousand different doctors and medical professionals, but I never stopped to think how I felt and how I was dealing with what was happening to me. From here out, then, I suppose this won't be so much story, but more stream of consciousness.
No one tells you how exhausting pain is when it's chronic pain. It makes you weak, which makes you less able to mentally and physically fight the pain, so the pain makes you even weaker, which makes you even less able to fight... It's a terribly vicious cycle that doesn't end well. And then when you become too weak to fight it, other stuff goes wrong. You're in pain all the time, so your body is running at a million miles an hour all the time - blood pressure and heart rate go through the roof, you're always hot because your bp and hr are so high, you overheat and you can't cool down, and you end up hungry but you can't bear to eat because the pain makes you nauseous. All I want to do is sleep, but that isn't happening either because I spend all day in bed resting and so I don't need as much sleep which is crap; I'm running on about five hours a night - on a good night.
And seriously. There's only so much crappy tv one can watch before one goes absolutely stir crazy. I'm totally losing my mind and going all cabin fever. I'd like to feel that I had the strength to go outside for a quick walk about the building, but I know I can barely even make it down the two flights of stairs before I overheat and need a rest. All this takes a serious mental toll. I need to keep what little strength I have so I need to keep eating, but I've gained thirty pounds in the last three years, and I don't even recognise myself in the mirror anymore because there's fat and curves in places there shouldn't be and it makes me so disgusted and uncomfortable that I can't bear to look at myself in the mirror. And none of my clothes fit anymore, so that helps.
I'm being pulled so far in so many different directions that I can't do any of it. How long before my brain completely shuts down and I check out for another six or eight months? I'd really like it if someone could just put me in a medically induced coma until I know if I can have this surgery, because I'm so tired that I don't think I'll ever be able to fully recover.
Sunday, October 6, 2013
Saturday, October 5, 2013
Ch. 7: Round 3; Or, I Think I May Well Just Die Now
September 2013 - ??
Around the time we were getting ready to move to North Carolina this summer, I found myself thinking "oh gosh. It's been a year and a half since my last bout started. I had a year and nine months between the onset of the first and the onset of the second. If it's going to happen again, it will probably be fairly soon. Shit." Then I refused to let myself think about it any more than that, partially because it did no good, and partially because I was fairly certain I would not be able to live through it again. I must have jinxed myself.
Come the middle of August, and I start feeling really strange, off, weird. I couldn't put my finger on it, but I knew something was going on inside my body and that whatever it was couldn't possibly be good. For a while, I was pretty sure I was about to crash head-first into a major depressive crash; I had most of my typical symptoms - overall fatigue, weaknesses, headaches. exhaustion, muscle tenderness, inability to concentrate on much. It didn't occur to me that it could be something else.
Flash forward about two weeks to the very end of August. I wake up one morning, and I know exactly what's wrong. Again. Oh god no. Right off the bat, the pain wasn't as intense is had been, but it was more than enough to keep me still in my bed from fear. Right. Time to find a neurologist down here that could / would perform ONBs for me. I futzed around online and found a multi-doctor practice in Winston-Salem that explicitly said they performed the procedures. I called them, and they set me up with Dr. Crowell, who could see me for an initial appointment the next day. He said he didn't perform the ONBs himself anymore, but other doctors in the practice did, so hang on while he went and pestered some of them. Off he went, and traipsed back about ten minutes later with Dr. Meyer, who did administer them, and who happens to me the most adorable older man with a wicked sense of humour. He did the ONB right then and there, and told me to come back as needed.
He was dead shocked when I phoned in about a week later, begging for another one. He said he's never heard of a patient needing ONBs with that short of a lapse between. Some patients are incredibly lucky; they can go months between injections. Not me, nope. And then another week later. On the third visit, Dr. Meyer suggested that maybe it was time to look at more serious, permanent options, as the cumulative effect of the steroids could cause long-term adrenal and kidney problems - and lord knows I don't need another problem to deal with, and certainly not a problem that could have been avoided in the first place.
Then I remembered there's a surgeon, Dr. Ducic, with the Peripheral Nerve Institute at Georgetown who pioneered nerve surgeries called nerve decompressions. What he does is go into the back of the head at the C2 vertebra - where all the spinal nerves are located - and cut away small slices of whatever tendons/muscles/ ligaments/blood vessels are strangling the inflamed and swollen nerve. This allows the nerve to still be inflamed and swollen as necessary, but gives it more space to do so. Dr. Ducic actually started out as a plastic surgeon, but it seems that field works perfectly for these kinds of nerve surgeries because plastic surgeons use the finest tools and work in the smallest layers of tissue for their work. The use of nerve decompression surgery for spinal nerves is quite new, however, less than ten years old; Dr. Ducic was the first, but even now there are only a handful of surgeons in the country that perform it. However, because Dr. Ducic is the closest practicing surgeon to me, and because he's the surgeon, we knew it would be hard to get in.
But we've filled in the application packet for a surgical consultation. For out-of-the-region patients, he'll do both the consult and the surgery on the same day, eliminating the need for multiple trips. It can take two, three, four months from when a patient submits their packet to their actual surgery, so I know it's going to take time. I can't take any of the powerful painkillers that are commonly prescribed for nerve pain - I mean I could, but I would have to stop my bipolar medications to start the pain medications, and that would be a bad life choice, but this is a bad life choice, too - so instead I"m on a serious anti-inflammatory for the next month or so, at least until we have a better idea of the timeline.
The other option to keep in mind for now is Botox. It's injected into the nerves, just like ONBs, but it lasts three to four months. I'm not convinced that Botox would work that long, especially since the ONBs don't last me nearly as long as they are 'supposed to' last. It is a possibility, however.
But with this round, there are a great deal more problems going on under the surface. Lots of things are going wrong, and I am completely confined to bed except for about two or three hours a week immediately after I've had my ONB. It isn't good.
Around the time we were getting ready to move to North Carolina this summer, I found myself thinking "oh gosh. It's been a year and a half since my last bout started. I had a year and nine months between the onset of the first and the onset of the second. If it's going to happen again, it will probably be fairly soon. Shit." Then I refused to let myself think about it any more than that, partially because it did no good, and partially because I was fairly certain I would not be able to live through it again. I must have jinxed myself.
Come the middle of August, and I start feeling really strange, off, weird. I couldn't put my finger on it, but I knew something was going on inside my body and that whatever it was couldn't possibly be good. For a while, I was pretty sure I was about to crash head-first into a major depressive crash; I had most of my typical symptoms - overall fatigue, weaknesses, headaches. exhaustion, muscle tenderness, inability to concentrate on much. It didn't occur to me that it could be something else.
Flash forward about two weeks to the very end of August. I wake up one morning, and I know exactly what's wrong. Again. Oh god no. Right off the bat, the pain wasn't as intense is had been, but it was more than enough to keep me still in my bed from fear. Right. Time to find a neurologist down here that could / would perform ONBs for me. I futzed around online and found a multi-doctor practice in Winston-Salem that explicitly said they performed the procedures. I called them, and they set me up with Dr. Crowell, who could see me for an initial appointment the next day. He said he didn't perform the ONBs himself anymore, but other doctors in the practice did, so hang on while he went and pestered some of them. Off he went, and traipsed back about ten minutes later with Dr. Meyer, who did administer them, and who happens to me the most adorable older man with a wicked sense of humour. He did the ONB right then and there, and told me to come back as needed.
He was dead shocked when I phoned in about a week later, begging for another one. He said he's never heard of a patient needing ONBs with that short of a lapse between. Some patients are incredibly lucky; they can go months between injections. Not me, nope. And then another week later. On the third visit, Dr. Meyer suggested that maybe it was time to look at more serious, permanent options, as the cumulative effect of the steroids could cause long-term adrenal and kidney problems - and lord knows I don't need another problem to deal with, and certainly not a problem that could have been avoided in the first place.
Then I remembered there's a surgeon, Dr. Ducic, with the Peripheral Nerve Institute at Georgetown who pioneered nerve surgeries called nerve decompressions. What he does is go into the back of the head at the C2 vertebra - where all the spinal nerves are located - and cut away small slices of whatever tendons/muscles/ ligaments/blood vessels are strangling the inflamed and swollen nerve. This allows the nerve to still be inflamed and swollen as necessary, but gives it more space to do so. Dr. Ducic actually started out as a plastic surgeon, but it seems that field works perfectly for these kinds of nerve surgeries because plastic surgeons use the finest tools and work in the smallest layers of tissue for their work. The use of nerve decompression surgery for spinal nerves is quite new, however, less than ten years old; Dr. Ducic was the first, but even now there are only a handful of surgeons in the country that perform it. However, because Dr. Ducic is the closest practicing surgeon to me, and because he's the surgeon, we knew it would be hard to get in.
But we've filled in the application packet for a surgical consultation. For out-of-the-region patients, he'll do both the consult and the surgery on the same day, eliminating the need for multiple trips. It can take two, three, four months from when a patient submits their packet to their actual surgery, so I know it's going to take time. I can't take any of the powerful painkillers that are commonly prescribed for nerve pain - I mean I could, but I would have to stop my bipolar medications to start the pain medications, and that would be a bad life choice, but this is a bad life choice, too - so instead I"m on a serious anti-inflammatory for the next month or so, at least until we have a better idea of the timeline.
The other option to keep in mind for now is Botox. It's injected into the nerves, just like ONBs, but it lasts three to four months. I'm not convinced that Botox would work that long, especially since the ONBs don't last me nearly as long as they are 'supposed to' last. It is a possibility, however.
But with this round, there are a great deal more problems going on under the surface. Lots of things are going wrong, and I am completely confined to bed except for about two or three hours a week immediately after I've had my ONB. It isn't good.
Friday, October 4, 2013
Ch. 6: Round 2.5; Does it Ever Stop Getting Worse?
January - April 2012
The first occipital nerve block worked really well. For about four days. Then the pain came back again, just as bad as ever. That wasn't supposed to happen. Most people go weeks, even months, between ONBs. I got days. I called the neurologist, and she had me come in for another set of injections. Then again, the same problem, where I was flat out again within five days. That really wasn't supposed to happen. So Dr Chehrenama set me up with a schedule of two sets of ONBs a week, one on Monday mornings and one on Thursday mornings, until I started to show some improvement. Having the shots early on Monday meant that I could generally work Monday, Tuesday, and Wednesday, then spend Thursday - Sunday resting and doing nothing. Of course, it wasn't a great plan, but it was the only plan we had. I didn't always make it to work, and some of the days I did go to work I didn't get much done, as moving furniture or toting boxes from one building to the other made the occipital nerve freak out. I always had plenty of paperwork and research and filing to do, though, so I kept myself well busy.
The rest of the time, I spent battling a million other problems. As someone who's dealt with depression for what amounts to my entire life, this kind of hopeless situation threw me off the deep end something terrible. A cycle of seemingly endless pain that never truly got better or went away unless half of my scalp was temporarily paralyzed isn't a great mindset to find one's self in. I'm not a social person, and never have been, but I couldn't go out even if I wanted to; I couldn't go see friends, I couldn't go get a beer after work, I couldn't have date night with Patrick. I found everything painfully exhausting and draining to the point that even talking to Patrick or Mike or Andrew for more than ten minutes completely drained me. Chronic pain isn't something one can simply trudge through - it's a fight every minute of every hour of every day, and it begins to take its toll mentally. I shut myself away more and more.
The physical symptoms weren't helping either. The bilateral pain was something entirely new. It was like double the pleasure, double the fun. I couldn't lie on my back, so I was forever tossing and turning in some vain-ass attempt to find a position that didn't kill my neck or my shoulders. With the bilateral pain, the pain and muscle tightness in my neck and shoulders and upper back also doubled. Dr. Chehrenama recommended specific trigger point injections directly into those muscles to help them relax as well; as with the ONBs, I'd feel relief for a few days, then it'd be back to the same old grind. Then weird, unexplained things started happening. I lost all feeling down my right arm with the exception of my fingers, which constantly tingled. My arm became literally useless; I spent most of my time holding my right arm across my chest with my left arm, almost cradling it. Yay learning to drive with one arm, because I didn't have a choice - I still had to get to appointments and work. Eventually, that feeling returned, but those weeks were indescribably unpleasant.
By about March, Dr Chehrenama felt I'd recovered enough to switch me over to one set of ONBs a week. I wasn't thrilled, but I was becoming more and more able to cope for longer periods. The pain still came back within four or five days, but the pain that did return was slightly less unbearable. The doctor couldn't really give an answer to why the pain was lessening, other than maybe the nerves had had enough time to rest and the muscles/tendons/ligaments/blood vessels had finally relaxed a bit with so much forced rest so that they weren't strangling the inflamed nerve any longer. The nerve could well be inflamed still, but it wasn't being physically constricted anymore. By May, I only had occasional ONBs and trigger point injections as I needed them - once every two-ish weeks.
By the summer, I felt as normal as I thought I was going to. I could slowly start exercising again and having a bit of a social life (well, I mean, as far as I have a social life). I was cautiously hopeful.
But if it happened a second time out of the blue, who was to say it wouldn't happen again?
The first occipital nerve block worked really well. For about four days. Then the pain came back again, just as bad as ever. That wasn't supposed to happen. Most people go weeks, even months, between ONBs. I got days. I called the neurologist, and she had me come in for another set of injections. Then again, the same problem, where I was flat out again within five days. That really wasn't supposed to happen. So Dr Chehrenama set me up with a schedule of two sets of ONBs a week, one on Monday mornings and one on Thursday mornings, until I started to show some improvement. Having the shots early on Monday meant that I could generally work Monday, Tuesday, and Wednesday, then spend Thursday - Sunday resting and doing nothing. Of course, it wasn't a great plan, but it was the only plan we had. I didn't always make it to work, and some of the days I did go to work I didn't get much done, as moving furniture or toting boxes from one building to the other made the occipital nerve freak out. I always had plenty of paperwork and research and filing to do, though, so I kept myself well busy.
The rest of the time, I spent battling a million other problems. As someone who's dealt with depression for what amounts to my entire life, this kind of hopeless situation threw me off the deep end something terrible. A cycle of seemingly endless pain that never truly got better or went away unless half of my scalp was temporarily paralyzed isn't a great mindset to find one's self in. I'm not a social person, and never have been, but I couldn't go out even if I wanted to; I couldn't go see friends, I couldn't go get a beer after work, I couldn't have date night with Patrick. I found everything painfully exhausting and draining to the point that even talking to Patrick or Mike or Andrew for more than ten minutes completely drained me. Chronic pain isn't something one can simply trudge through - it's a fight every minute of every hour of every day, and it begins to take its toll mentally. I shut myself away more and more.
The physical symptoms weren't helping either. The bilateral pain was something entirely new. It was like double the pleasure, double the fun. I couldn't lie on my back, so I was forever tossing and turning in some vain-ass attempt to find a position that didn't kill my neck or my shoulders. With the bilateral pain, the pain and muscle tightness in my neck and shoulders and upper back also doubled. Dr. Chehrenama recommended specific trigger point injections directly into those muscles to help them relax as well; as with the ONBs, I'd feel relief for a few days, then it'd be back to the same old grind. Then weird, unexplained things started happening. I lost all feeling down my right arm with the exception of my fingers, which constantly tingled. My arm became literally useless; I spent most of my time holding my right arm across my chest with my left arm, almost cradling it. Yay learning to drive with one arm, because I didn't have a choice - I still had to get to appointments and work. Eventually, that feeling returned, but those weeks were indescribably unpleasant.
By about March, Dr Chehrenama felt I'd recovered enough to switch me over to one set of ONBs a week. I wasn't thrilled, but I was becoming more and more able to cope for longer periods. The pain still came back within four or five days, but the pain that did return was slightly less unbearable. The doctor couldn't really give an answer to why the pain was lessening, other than maybe the nerves had had enough time to rest and the muscles/tendons/ligaments/blood vessels had finally relaxed a bit with so much forced rest so that they weren't strangling the inflamed nerve any longer. The nerve could well be inflamed still, but it wasn't being physically constricted anymore. By May, I only had occasional ONBs and trigger point injections as I needed them - once every two-ish weeks.
By the summer, I felt as normal as I thought I was going to. I could slowly start exercising again and having a bit of a social life (well, I mean, as far as I have a social life). I was cautiously hopeful.
But if it happened a second time out of the blue, who was to say it wouldn't happen again?
Thursday, October 3, 2013
Ch. 5: Round 2; Or, Oh No, Not Again
November 2011 - January 2012
After the fluke in September, life returned to my new 'normal' standard of general discomfort but not much pain. I'd enjoyed the fall, with trips with Patrick to wineries and the Rennaisance Fair. The ankle I'd accidentally broke without knowing had healed up fine, and I could work out. Our parents met for the first time over Thanksgiving dinner with some of his extended family. Everyone ate too much and drank too much and laughed too much, then trundled home to sleep it off - like you do. Patrick and I went back to his new place, as I'd had too much wine to drive; I figured I'd go home sometime the next day-ish.
I woke up the next morning and went to stand up to go to the bathroom. Crash. Head explode, on the floor, before I knew what was happening. Oh god. Not again. I decided to stay in bed all day and throw up and black out every time I tried to move and cover my entire head in icepacks, and hope that it would pass in the next two days, like it had last time. I was almost getting to be an expert in this. Patrick was understandably freaked out again, so he phoned my parents to let them know it had happened for a second time in two and a half months, but since I wasn't really panicking about it, my parents didn't panic about it, and said we'd take it a day at a time and hope this, too, went over quickly.
But the next day it was worse. And the next day. And the next day. The pain was intensifying and spreading into my neck and shoulders and back again. I couldn't breathe or blink without nearly passing out. I couldn't keep water down, let alone ginger ale or tea or toast. I wasn't sleeping, only dozing, because the pain was so intense. I could feel every single heartbeat at the back of my head where the pain was centered. And the pain there had spread to both sides of my head, instead of being confined to the left. As the pain increased day after day, I sank deeper and deeper into a massive depressive crash. When you're in so much pain that even the slightest movement makes you black out, it becomes increasingly hard to see that there's a way out, that there's a solution, that there's even something that can temporarily mitigate the pain for an hour or two. And the longer it goes on, the further and further down the vicious spiral I went. By the middle of December, I was in serious, serious trouble. The pain kept getting worse, and I simply wanted to kill myself.
We went to work finding a new neurologist who could possibly help. My fantastic GP, Dr. L., recommended his daughter's neurologist in Alexandria, saying that she thought outside the box of 'traditional' illnesses and wanted to find the root cause of symptoms rather than simply treating them. With Dr. L's in with the practice, I got in to see her in a week; usually, a new patient can wait two or three months for an initial visit. Despite being scheduled in for a half-hour into visit, Dr Chehrenama spent an hour and a half with my parents and I, trying to pin down exactly where the pain centered, where it radiated to, how it felt, how it changed, what my other symptoms were. She requested a series of traditional MRIs and a super-special cineMRI to make sure that there was CSF moving normally inside my brain without pooling and creating a little cyst-like pocket. It took a while, but she finally gave me an answer.
Occipital Neuralgia. There really was something wrong "in my head," a very definite something wrong. The occpital nerves that run from the base of the spinal cord and up-and-over the skull to behind the eyes, were essentially going haywire. The nerve highlighted in yellow here is the occpitial nerve; further up, it branches into the greater occpitial nerve, which runs to behind the eye, and the lesser occipital nerve, which runs more around the skull to behind the ear.
Suddenly, it all made sense. The intense, constant pressure of my brain sitting on the base of my skull and the nerves at the top of my spinal cord had damaged the occipital nerve. When a nerve is damaged, it usually becomes inflammed and swollen. This puts pressure on any muscles, tendons, ligaments, and/or blood vessels around it. In short, what was happening in my head was that my occpital nerves had been damaged and were swollen, pushing against everything that was around it. Then the muscles in the area went into what Dr Chehrenama called "protective danger mode," mostly freezing closed around the damaged area. This made the nerve swell and become more inflammed. The pain I was feeling was the nerves misfiring, sending too many electrical impulses all over the place, because it didn't know what else to do.
So the trick was going to be managing and lessening the inflammation to allow the muscles to relax, which would allow the nerve the space to return to its normal size and stop sending the panicked pain messages to my brain. To do so, she prescribed a series of occipital nerve blocks, or ONBs - a series of steroidal injections mixed with lidocaine, injected directly into the nerve. Yes, it feels as uncomfortable as it sounds, having needles placed directly into the nerves at the back of the skull where there isn't much skin and no muscle or fat to protect it. Luckily, the lidocaine kicks in immediately, so I only ever feel the first tiniest pinprick.
I went back to the office a few days later for the first set of injections. Within thirty seconds of the injection, the entire back of my head was completely numb, which is an odd sensation in itself (hey, where are my ears? I thought they were there a minute ago...), but within a minute, there was no pain at all. It was gone. I couldn't feel a thing. I could poke at my head, pull my hair - nothing. It was the first time in about twenty months I wasn't largely uncomfortable.
Now I had an answer. But everything wasn't better yet. What next?
Wednesday, October 2, 2013
Ch 4: Round 1.9?; Or, A Preview of What's to Come
(Technically, I'm furloughed. So between that and bedrest, I have absolutely nothing to do right now. Thus, more blogging).
September 2011.
While I'm still uncomfortable most of the time, things are by-and-large better. I'm working mostly full-time again; the days I don't feel well enough to work, my boss set me up to work from home for a few hours. I'm actually running again, and have worked my way up to a fairly steady seven-ish miles five days a week, so the weight I lost after almost a year on bedrest is totally gone. I still can't lift weights or anything weighing more than a few pounds, but that was a sacrifice I was willing to make. I knew I wasn't totally healed and completely back to normal, but it was close enough, and I was happy with it.
After a long day at work - at a brand new job in a historic house, just what I wanted to do - I went to Patrick's for whiskey and movies - as was pretty standard. We'd been together for about five months; he and Mike were packing up to move into a bigger townhouse around the corner in Reston with their mate Andrew, and were rightfully excited about it. On the 10th, Patrick and I were heading to Pennsylvania to attend some friends' wedding. But I woke up that morning and my brain exploded out of my skull as though a grenade had been set off inside my head. I tried to turn over to get Patrick's attention, and blacked out. I came to just in time to whimper and gesture for the trash can as the pain-induced nausea reared its head again. At first, he thought I'd simply had too much whiskey and was hungover, so he went to fetch crackers and water from the kitchen. I couldn't even stomach the idea. When he realised that I was panicking and freaking out and in such immense pain, he panicked and called my parents. I barely remember them stopping by, but I know they did, because I remember begging Patrick to cover the tattoo on my back as my parents didn't know about it yet. He didn't get the memo, but they were panicking so much themselves that I honestly don't think they saw. I spent most of the day passing out, coming to, throwing up, and then passing back out into a sleepless haze.
But the next morning, I woke up and was significantly better. By the third day, it was as if none of it had happened and I was back to the "normal" level of discomfort. Nevertheless, I still took it extra super easy for about a week, staying with Patrick, lounging about, doing a lot of nothing. Not exactly how one wants to spend the early days of a relationship, but it was far better than what happened two months later.
September 2011.
While I'm still uncomfortable most of the time, things are by-and-large better. I'm working mostly full-time again; the days I don't feel well enough to work, my boss set me up to work from home for a few hours. I'm actually running again, and have worked my way up to a fairly steady seven-ish miles five days a week, so the weight I lost after almost a year on bedrest is totally gone. I still can't lift weights or anything weighing more than a few pounds, but that was a sacrifice I was willing to make. I knew I wasn't totally healed and completely back to normal, but it was close enough, and I was happy with it.
After a long day at work - at a brand new job in a historic house, just what I wanted to do - I went to Patrick's for whiskey and movies - as was pretty standard. We'd been together for about five months; he and Mike were packing up to move into a bigger townhouse around the corner in Reston with their mate Andrew, and were rightfully excited about it. On the 10th, Patrick and I were heading to Pennsylvania to attend some friends' wedding. But I woke up that morning and my brain exploded out of my skull as though a grenade had been set off inside my head. I tried to turn over to get Patrick's attention, and blacked out. I came to just in time to whimper and gesture for the trash can as the pain-induced nausea reared its head again. At first, he thought I'd simply had too much whiskey and was hungover, so he went to fetch crackers and water from the kitchen. I couldn't even stomach the idea. When he realised that I was panicking and freaking out and in such immense pain, he panicked and called my parents. I barely remember them stopping by, but I know they did, because I remember begging Patrick to cover the tattoo on my back as my parents didn't know about it yet. He didn't get the memo, but they were panicking so much themselves that I honestly don't think they saw. I spent most of the day passing out, coming to, throwing up, and then passing back out into a sleepless haze.
But the next morning, I woke up and was significantly better. By the third day, it was as if none of it had happened and I was back to the "normal" level of discomfort. Nevertheless, I still took it extra super easy for about a week, staying with Patrick, lounging about, doing a lot of nothing. Not exactly how one wants to spend the early days of a relationship, but it was far better than what happened two months later.
Ch 3: Round 1.2; Or, Now What is it? This isn't the Same
September 2010 - April 2011
By the end of summer, I still wasn't much better. I was attempting to slog through life, but I wasn't having too much success. My full-time contracting job became a maybe-fifteen-hours-a-week contracting job because I still could not to sit up for more than a few hours a day. I started using the elliptical again, but could only manage about a mile a few days a week. I'd made a promise to my ballet teacher when I was a teenager that if she took the next ballet exam in the programme, I'd take the next one too, but there was no way I could spin or jump. Riding the Metro remained impossible, as even going the four stops to work made me so nauseous I'd have to get off the train. Six months later, no significant progress at normality.
The headaches continued. And they were spreading. Instead of being centrally located at one spot at the back left of my head, about three inches around from my left ear, the pain creeped down into my neck, into my shoulders, into my back. All the muscles in the area contracted and froze into place. I started looking as though I could have been the Hunchback. I had no range of motion in my neck. I couldn't pick up anything of any weight as that caused me to black out. Of course, the headaches kept coming, leaving me bedridden a few days a week; even when I wasn't bedridden, the pain was always there, throbbing away.
So back to the neurologist. Unfortunately, she had no more ideas than anyone else, and suggested that my body was still trying to cope with the damage from the CSF leak. She could only recommend continuing bedrest as much as possible, wearing a corset whenever I was upright to keep everything in place, and drinking as much water and caffeine as I could. The second two posed no issue; the first was becoming increasingly unpleasant, to say the least. One can only spend so much time in bed before going crazy, and by this point, it had been about eight months. I felt I'd watched every movie and television show I'd ever wanted to see. I'm not exactly the most social person, but I wanted to have the ability to go out and see people if I felt like it. It's mentally and physically and emotionally draining.
Back to the neurologist. She recommended starting a round of physical therapy to help loosen and calm down the muscles in my neck and back. She thought that there was so much damage to the base of my brain and the top of my spinal cord that the muscles had contracted in place to protect my brain and upper spinal cord. If the muscles were allowed to relax some, maybe those areas could rest and heal. So I started PT two days a week in December. I had exercises to do three times a day at home. I never felt that it helped, so I stopped going in March, I think.
By April, the headaches were mostly gone. I was still extremely aware of the pain - it twinged whenever I did any sort of physical exertion, I still couldn't lift anything more than about five pounds. I pushed my way through my ballet exam - because I said I would - and somehow passed. My memories from this time, too, are spotty. When the brain is so busy processing pain, few memories are processed into short-term and long-term memories.
But something had happened in December. On New Year's Eve, my college roommates dragged me to a party because they knew I needed to get out of the house for something. I knocked on the door, and the cutest guy I'd ever seen answered the door. He invited me in, and a giant cardboard stand-up of Boba Fett greeted me. I had no reason to think he would change everything.
By the end of summer, I still wasn't much better. I was attempting to slog through life, but I wasn't having too much success. My full-time contracting job became a maybe-fifteen-hours-a-week contracting job because I still could not to sit up for more than a few hours a day. I started using the elliptical again, but could only manage about a mile a few days a week. I'd made a promise to my ballet teacher when I was a teenager that if she took the next ballet exam in the programme, I'd take the next one too, but there was no way I could spin or jump. Riding the Metro remained impossible, as even going the four stops to work made me so nauseous I'd have to get off the train. Six months later, no significant progress at normality.
The headaches continued. And they were spreading. Instead of being centrally located at one spot at the back left of my head, about three inches around from my left ear, the pain creeped down into my neck, into my shoulders, into my back. All the muscles in the area contracted and froze into place. I started looking as though I could have been the Hunchback. I had no range of motion in my neck. I couldn't pick up anything of any weight as that caused me to black out. Of course, the headaches kept coming, leaving me bedridden a few days a week; even when I wasn't bedridden, the pain was always there, throbbing away.
So back to the neurologist. Unfortunately, she had no more ideas than anyone else, and suggested that my body was still trying to cope with the damage from the CSF leak. She could only recommend continuing bedrest as much as possible, wearing a corset whenever I was upright to keep everything in place, and drinking as much water and caffeine as I could. The second two posed no issue; the first was becoming increasingly unpleasant, to say the least. One can only spend so much time in bed before going crazy, and by this point, it had been about eight months. I felt I'd watched every movie and television show I'd ever wanted to see. I'm not exactly the most social person, but I wanted to have the ability to go out and see people if I felt like it. It's mentally and physically and emotionally draining.
Back to the neurologist. She recommended starting a round of physical therapy to help loosen and calm down the muscles in my neck and back. She thought that there was so much damage to the base of my brain and the top of my spinal cord that the muscles had contracted in place to protect my brain and upper spinal cord. If the muscles were allowed to relax some, maybe those areas could rest and heal. So I started PT two days a week in December. I had exercises to do three times a day at home. I never felt that it helped, so I stopped going in March, I think.
By April, the headaches were mostly gone. I was still extremely aware of the pain - it twinged whenever I did any sort of physical exertion, I still couldn't lift anything more than about five pounds. I pushed my way through my ballet exam - because I said I would - and somehow passed. My memories from this time, too, are spotty. When the brain is so busy processing pain, few memories are processed into short-term and long-term memories.
But something had happened in December. On New Year's Eve, my college roommates dragged me to a party because they knew I needed to get out of the house for something. I knocked on the door, and the cutest guy I'd ever seen answered the door. He invited me in, and a giant cardboard stand-up of Boba Fett greeted me. I had no reason to think he would change everything.
Tuesday, October 1, 2013
Ch 2: Round One; or, What it Feels Like When Your Brain Bangs Around inside Your Skull
Feb., 2010
I came to on the floor in the worst pain I'd ever been in, nauseous and dripping with sweat. I didn't know how I'd got there or what had happened. While trying to haul myself into a sitting position, I passed out again and collapsed back to the floor, gasping and whimpering because I couldn't even cry.
This wasn't a headache. Most people are discomforted by headaches and can largely work through them. This was passing out every time I turned over in bed; this was the feeling of a grenade exploding inside my skull every time I breathed; this was wanting to cry every time my eyes moved in their sockets but being too afraid to do so. Or so my parents told me later. I don't remember anything. I remember leaving the hospital, then I have essentially no memories at all for the next three weeks; the weeks following that are spotty at best.
We had no idea what was wrong. We knew that I'd probably have a headache the next morning, but this was more than that. None of my discharge paperwork mentioned anything of this magnitude; they only recommended taking it easy for a day or two. There was no mention of "if symptoms x, y, and z occur, go directly to a hospital." We phoned my neurologist, but they were closed from the storm. Same with my family practice doctor. My parents decided to hang on for one day until the worst of the storm was over, then re-assess.
The next day came. And then the next. And the next. My condition continued to worsen. I was throwing up and blacking out at the same time; I couldn't keep water down; I couldn't so much as move my legs in bed. I couldn't sleep, I only dozed in and out of consciousness all day. And we were snowed in. Mom couldn't shovel snow because she'd just been diagnosed with cardiomyopathy. Dad had only broken his knee four months earlier and was adjusting to crutches after months in a wheelchair. Alex was away at university. There were multiple feet of snow, and the second batch of Snowmaggedon was due the next day. If we had to make a dash for it, it was now or never. Dad phoned his brother and begged him to come over, help dig us a pathway out the house, and drive us to hospital. Uncle Bill showed up, and off we went.
Lesson learned: never go to Potomac Hospital in Woodbridge ever again. And if one needs admittance to hospital for something that's truly an emergency, don't drive yourself in, call a fricking ambulance. Signed in and went to curl myself into some form of fetal position ball in one of those chairs that doctors' offices have that somehow are the most uncomfortable chairs in the world. Check-in staff ensured I'd be seen right away with such intense head pains. Six hours later, I still hadn't even so much as seen a triage nurse. Sobbing and passing out all at once, I begged to simply go home. Sitting in hospital. being forced to sit rather than lie down, made me feel a million times worse. Uncle Bill drove us back home, and I collapsed onto the sofa in the living room, which became my bedroom for most of the next few weeks until I was "okay enough" to go home.
Next morning, we call my family practice doctor. He's treated all of my family for a good ten years now; he looks like Jeff Goldblum, has a wicked sense of sarcastic dry humour, and totally gets how weird my family is. He says that he doesn't have any openings today, but to get in here or else, and he will see me the minute I get in. There's a pitch black room with an exam bed ready when I get there, and Mom said I was back in the exam room and Dr L. was in to see me within three minutes of us arriving. Mom and Dad explained my symptoms. Dr L. listens, says "you wait there two minutes. I'm going to make a phone call," and comes back in five minutes with a prescription for a blood patch procedure at Prince William Hospital around the corner. He told us he suspected that the botched part of the spinal tap had caused a major leak of my CSF fluid out of my spine and probably into my lymph system somewhere. Because I had no CSF fluid in my spine, there was no CSF to protect my brain inside my skull - the fluid that lets the brain 'float' inside the skull without resting on the base of the skull and the top of the spine, and that cushions it from knowing around into the skull. Every time my I moved, my brain moved, causing traumatic bruising to my brain itself; every time I was sitting or standing, my brain rested directly on top of my spinal cord.
Around the building we went to the hospital. At least they had softer, two-person 'armchair-style' chairs in the waiting areas while Mum filled out my paperwork and then while we waited in the phlebotomy labs. The team took me in immediately - in the middle of a blizzard, they didn't have much to do, thankfully. For the first time in my life, a doctor fully explained a procedure to me, including the risks from the procedure, side effects, and what to watch out for in recovery. Essentially, the procedure was using one of those new fancy digital x-ray machines to find the exact location of the leakage, drawing a few vials of blood from my arm, mixing the vials, then injecting the blood directly into the hole as an internal plug. Of course, I was terrified at the concept of more needles in my spine since the first experiment hadn't gone well, but the nurses and doctors on the team were kind and patient and took care to let me know what was happening the whole time. They said the whole procedure took less than ten minutes, and then left me in a darkened room to take a nap and lie still for two or three hours while the blood clotted inside the hole.
After my nap, for the first time in a week, I sat upright without passing up. It still hurt like a motherfucker, and I had to lie right back down, but I sat up. I sat up in the wheelchair while they pushed me to the car. The doctors told me I still needed to spend as much time as possible lying down while my body produced more CSF to replenish what I'd lost. It could take a week or two, it could take six to eight weeks - no one had any idea how much I'd lost so it was impossible to tell. The next three weeks I only was upright long enough to get to the bathroom or the kitchen and back, a total of maybe 30 steps four times a day, and even that was pushing it. There wasn't enough CSF yet to protect my brain, which was still smashing around inside my skull and bruising every time I moved. Again, I don't remember any of this. I know I spent three weeks on the sofa not getting better, but the human brain in pain is remarkable at completely ceasing creating and storing memories.
Three weeks later, I wasn't any better than I was the day after the blood patch. Dr L. recommended a second blood patch. This continued my apparently life-long trend of being a medical mystery, because the rates of requiring a second blood patch are somewhere in the neighbourhood of 1%. The team at PWHospital had never heard of anyone requiring a second procedure. But they performed it, I laid around for another multi-hour nap, and was sent home again with the same orders.
Fast forward another month-ish. I've migrated back to my own apartment as things have improved, but I'm not significantly better. I'm still totally confined to be bed. It's my last semester of graduate school and I'm supposed to be taking my comprehensive exams in a week. I haven't been to any classes in a month. I haven't studied a single bit because I wasn't able to hold up a book to read and anyway reading hurt my eyes so bad that it made me pass out. Luckily, I my grad advisor and the department head rock, and they let me take the exam from my bed. Somehow, I passed, and dragged my ass around the corner to the local pub to celebrate with some classmates - it was the first time I'd been "out" in something like six weeks. I had maybe a glass of water and a couple bits of nibbles, then decided getting up had been a gigantic mistake, and went right back to bed.
I managed to graduate on time, even making it to a couple of my lectures before the middle of May. I attended the commencement ceremony because Nana had flown all the way over for it, and because Michelle Obama was scheduled to give the commencement speech. I think she gave the speech; I don't remember. My memory was still completely shot; I knew things were happening in my life, but for whatever reason my brain simply couldn't process any of them into my memory. I guess my brain was too busy trying to not die or something to worry about anything else.
Because I'm still not really getting better. The pain is still terrible. It's beginning to change, but it's still unbearable, to say the least. The pain isn't lessened by lying down or made worse by sitting or standing or moving; it rages along at a constant level. The blacking out has largely gone away, but the pain is still making me nauseous to the point where I can't eat much. And the pain is spreading from the back of my head, right at the base of my skull, down into my neck and into my shoulders. The muscles have become so sore and painful that they're contracting into place and cannot relax, turning me into a veritable hunchback who can't move my neck, shoulders, or upper back. The whole area is tender and uber-sensitive to pressure or touch. It's been two months. Why am I not better? Why am I not feeling even a bit better after six weeks?
I came to on the floor in the worst pain I'd ever been in, nauseous and dripping with sweat. I didn't know how I'd got there or what had happened. While trying to haul myself into a sitting position, I passed out again and collapsed back to the floor, gasping and whimpering because I couldn't even cry.
This wasn't a headache. Most people are discomforted by headaches and can largely work through them. This was passing out every time I turned over in bed; this was the feeling of a grenade exploding inside my skull every time I breathed; this was wanting to cry every time my eyes moved in their sockets but being too afraid to do so. Or so my parents told me later. I don't remember anything. I remember leaving the hospital, then I have essentially no memories at all for the next three weeks; the weeks following that are spotty at best.
We had no idea what was wrong. We knew that I'd probably have a headache the next morning, but this was more than that. None of my discharge paperwork mentioned anything of this magnitude; they only recommended taking it easy for a day or two. There was no mention of "if symptoms x, y, and z occur, go directly to a hospital." We phoned my neurologist, but they were closed from the storm. Same with my family practice doctor. My parents decided to hang on for one day until the worst of the storm was over, then re-assess.
The next day came. And then the next. And the next. My condition continued to worsen. I was throwing up and blacking out at the same time; I couldn't keep water down; I couldn't so much as move my legs in bed. I couldn't sleep, I only dozed in and out of consciousness all day. And we were snowed in. Mom couldn't shovel snow because she'd just been diagnosed with cardiomyopathy. Dad had only broken his knee four months earlier and was adjusting to crutches after months in a wheelchair. Alex was away at university. There were multiple feet of snow, and the second batch of Snowmaggedon was due the next day. If we had to make a dash for it, it was now or never. Dad phoned his brother and begged him to come over, help dig us a pathway out the house, and drive us to hospital. Uncle Bill showed up, and off we went.
Lesson learned: never go to Potomac Hospital in Woodbridge ever again. And if one needs admittance to hospital for something that's truly an emergency, don't drive yourself in, call a fricking ambulance. Signed in and went to curl myself into some form of fetal position ball in one of those chairs that doctors' offices have that somehow are the most uncomfortable chairs in the world. Check-in staff ensured I'd be seen right away with such intense head pains. Six hours later, I still hadn't even so much as seen a triage nurse. Sobbing and passing out all at once, I begged to simply go home. Sitting in hospital. being forced to sit rather than lie down, made me feel a million times worse. Uncle Bill drove us back home, and I collapsed onto the sofa in the living room, which became my bedroom for most of the next few weeks until I was "okay enough" to go home.
Next morning, we call my family practice doctor. He's treated all of my family for a good ten years now; he looks like Jeff Goldblum, has a wicked sense of sarcastic dry humour, and totally gets how weird my family is. He says that he doesn't have any openings today, but to get in here or else, and he will see me the minute I get in. There's a pitch black room with an exam bed ready when I get there, and Mom said I was back in the exam room and Dr L. was in to see me within three minutes of us arriving. Mom and Dad explained my symptoms. Dr L. listens, says "you wait there two minutes. I'm going to make a phone call," and comes back in five minutes with a prescription for a blood patch procedure at Prince William Hospital around the corner. He told us he suspected that the botched part of the spinal tap had caused a major leak of my CSF fluid out of my spine and probably into my lymph system somewhere. Because I had no CSF fluid in my spine, there was no CSF to protect my brain inside my skull - the fluid that lets the brain 'float' inside the skull without resting on the base of the skull and the top of the spine, and that cushions it from knowing around into the skull. Every time my I moved, my brain moved, causing traumatic bruising to my brain itself; every time I was sitting or standing, my brain rested directly on top of my spinal cord.
Around the building we went to the hospital. At least they had softer, two-person 'armchair-style' chairs in the waiting areas while Mum filled out my paperwork and then while we waited in the phlebotomy labs. The team took me in immediately - in the middle of a blizzard, they didn't have much to do, thankfully. For the first time in my life, a doctor fully explained a procedure to me, including the risks from the procedure, side effects, and what to watch out for in recovery. Essentially, the procedure was using one of those new fancy digital x-ray machines to find the exact location of the leakage, drawing a few vials of blood from my arm, mixing the vials, then injecting the blood directly into the hole as an internal plug. Of course, I was terrified at the concept of more needles in my spine since the first experiment hadn't gone well, but the nurses and doctors on the team were kind and patient and took care to let me know what was happening the whole time. They said the whole procedure took less than ten minutes, and then left me in a darkened room to take a nap and lie still for two or three hours while the blood clotted inside the hole.
After my nap, for the first time in a week, I sat upright without passing up. It still hurt like a motherfucker, and I had to lie right back down, but I sat up. I sat up in the wheelchair while they pushed me to the car. The doctors told me I still needed to spend as much time as possible lying down while my body produced more CSF to replenish what I'd lost. It could take a week or two, it could take six to eight weeks - no one had any idea how much I'd lost so it was impossible to tell. The next three weeks I only was upright long enough to get to the bathroom or the kitchen and back, a total of maybe 30 steps four times a day, and even that was pushing it. There wasn't enough CSF yet to protect my brain, which was still smashing around inside my skull and bruising every time I moved. Again, I don't remember any of this. I know I spent three weeks on the sofa not getting better, but the human brain in pain is remarkable at completely ceasing creating and storing memories.
Three weeks later, I wasn't any better than I was the day after the blood patch. Dr L. recommended a second blood patch. This continued my apparently life-long trend of being a medical mystery, because the rates of requiring a second blood patch are somewhere in the neighbourhood of 1%. The team at PWHospital had never heard of anyone requiring a second procedure. But they performed it, I laid around for another multi-hour nap, and was sent home again with the same orders.
Fast forward another month-ish. I've migrated back to my own apartment as things have improved, but I'm not significantly better. I'm still totally confined to be bed. It's my last semester of graduate school and I'm supposed to be taking my comprehensive exams in a week. I haven't been to any classes in a month. I haven't studied a single bit because I wasn't able to hold up a book to read and anyway reading hurt my eyes so bad that it made me pass out. Luckily, I my grad advisor and the department head rock, and they let me take the exam from my bed. Somehow, I passed, and dragged my ass around the corner to the local pub to celebrate with some classmates - it was the first time I'd been "out" in something like six weeks. I had maybe a glass of water and a couple bits of nibbles, then decided getting up had been a gigantic mistake, and went right back to bed.
I managed to graduate on time, even making it to a couple of my lectures before the middle of May. I attended the commencement ceremony because Nana had flown all the way over for it, and because Michelle Obama was scheduled to give the commencement speech. I think she gave the speech; I don't remember. My memory was still completely shot; I knew things were happening in my life, but for whatever reason my brain simply couldn't process any of them into my memory. I guess my brain was too busy trying to not die or something to worry about anything else.
Because I'm still not really getting better. The pain is still terrible. It's beginning to change, but it's still unbearable, to say the least. The pain isn't lessened by lying down or made worse by sitting or standing or moving; it rages along at a constant level. The blacking out has largely gone away, but the pain is still making me nauseous to the point where I can't eat much. And the pain is spreading from the back of my head, right at the base of my skull, down into my neck and into my shoulders. The muscles have become so sore and painful that they're contracting into place and cannot relax, turning me into a veritable hunchback who can't move my neck, shoulders, or upper back. The whole area is tender and uber-sensitive to pressure or touch. It's been two months. Why am I not better? Why am I not feeling even a bit better after six weeks?
Subscribe to:
Posts (Atom)