At the end of the last post one of my Chiari friends was recommending I go get a second opinion from another Neurosurgeon, and this is picking up where that one left off.
This Neurosurgeon turned out to be a specialist in brain and spinal cord injuries. Even when I was nursing I did not get to meet very many neurosurgeons so I didn't realize that they came in "different flavors". Some are much more serious about central nervous system conditions. I tend to think of them as the "A students" in neurosurgery school. Then there are the neurosurgeons that specialize in fixing the peripheral stuff, like carpal tunnel or pinched nerves, and despite them still being good neurosurgeons you might not want one poking around in your skull or too near your spinal cord with a sharp knife. You might not even want them diagnosing those areas. This second fellow definitely took his central nervous system neurology far more seriously than the previous doctor, and I had confidence immediately that he was going to figure out what was wrong with me.
The new Neurosurgeon was quiet but he was sharing some quality observations that the last guy missed entirely. The Open MRI was definitely showing Chiari and that white spot in my spinal cord was NOT a "retained central spinal canal". Those close in your teens and they are completely asymptomatic. He asked a lot of questions about my history and symptoms. I had neurological signs that said I had something wrong with my spinal cord and it was probably Syringomyelia (yes, it's a mouthful and I'll get to that next post), but there were not enough images from the Open MRI to show the full length of it, and the images were very grainy, so they scheduled me for a new MRI, and this one was going to be a complete high resolution image of my entire brain and upper spine, and they would also measure my spinal fluid movement while they did this MRI. This was a new way to do an MRI and it was called a Flow Study, fMRI, or CINE MRI. They are more common now. A heart rate monitor (pulse oximetry) is clipped to your finger while they do the MRI because as your heart beats and fills your brain with blood it expands and this expansion displaces the spinal fluid that it rests in, which moves to a cavity just at the base of the skull, through the foramen magnum (hole at the base of skull that spinal cord and blood vessels fit through) and then it gently flows down around the spinal cord, which brings the spinal cord nourishment. When the heart relaxes and fills with blood again this process reverses itself and the fluid moves from around the spinal cord back into the brain area. If they keep track of your heart pulse, then they can also see how spinal fluid should pulse on the MRI films. Whether Chiari surgery is done or not is often based on whether or not it is obstructing the flow of spinal fluid through the foramen magnum. Once they got me in the MRI machine and discovered that I did indeed have a syrinx and it had spinal fluid in it, the supervising Radiologist (who was a research doctor) decided to see if there was any movement of that fluid in the syrinx as well. After all, they don't get to see these things everyday and this might be a handy thing to know about. So it turned out to be a very long MRI. It was nearly 3 hours, but they gave me breaks when I asked for them, and the Tech was very nice.
The next appointment with the Neurosurgeon gave me answers. Yes, I definitely had Syringomyelia, from C4-T1, but it was narrow (and I remember this meant nothing to me at the time). Yes I also had a mild Chiari malformation, just under the criteria for Chiari I, so it was "borderline". My spinal fluid flow was just fine, which meant that it probably wasn't causing the symptoms and there was nothing to "fix" in a Chiari surgery, which is designed to improve spinal fluid flow. So what was causing the confusing list of symptoms? Most of them were on the list of Chiari symptoms! How could that not be the problem?
Which brings me to questions I see asked a lot on the Chiari boards and groups: What causes Chiari symptoms? Pressure on the areas of the brain that control those symptoms, mainly cerebellum and brain stem. What is one reason some Chiari surgeries fail? Because the symptoms were not due to pressure, but due to neuron damage in those same areas. Chiari surgery can only fix pressure and flow problems, it cannot fix brain damage. But having even a mild or borderline Chiari malformation can complicate a concussion by taking up extra space, which increases the likelihood that neurons will be crushed. So a certain percentage of patients that have the expensive brain surgery done wake up still stuck with the old symptoms, plus new ones, a funky haircut, a nasty scar, and a long recovery to complicate their lives even further. What a bum deal, huh?
What I have is not Chiari symptoms but Chronic Post Concussion Syndrome symptoms, a mild brain injury, in other words. I have damage in the same areas where more advanced Chiari I puts pressure, the hind brain.
But how could I be brain injured? I didn't have a coma. I never lost consciousness, or if I did it was only momentary. I never even really whacked my head, although I was kissing the pavement while the dogs were jumping around on top of me.
My Neurosurgeon had me tell him where the dog that went over my shoulders and head put his feet. He explained that when he put his feet on my left shoulder it shoved my torso that direction very abruptly, and my spine went that way with it, of course, and my spinal cord twisted with my spine that direction and since spinal cord turns into brain stem above that foramen magnum hole at the base of the skull, my brain stem likely went that way too, and my cerebellum may have as well because the bottom part of it is jammed into that hole with the cord that twisted. When the dog's front feet hit my skull it abruptly got twisted to the right and my cerebrum likely went with that momentum. This caused my brain to act like a joint with my cerebrum being the ball socket, and cerebellum and brain stem acting like the ball joint on the end of a long bone, or in this case, cord. The brain just isn't designed to move like that. The twist broke connections, and there wasn't enough room for swelling to begin with, so neurons were crushed in what is technically called a diffuse shearing injury. This was absolutely not what I was expecting to hear.
So how come this wasn't obvious immediately? Why did the symptoms show up slowly?
That would be because a lot of neurons were *damaged* instead of killed instantaneously like you have with a severe head trauma. The body can actually fix mildly damaged neurons, and it can reroute around neuron pathways that aren't working right. But there is a sort of "clock" that the body uses to judge how to manage it's healing resources, and if a neuron is breaking down faster than it can be repaired the body will eventually let it die, and then when so many neurons in a certain area are dead the functions associated with that area suffer until a new (slower) route can be established around the damage. Every new route is less efficient than the one before it, so even things I relearn will always be slower afterwards. He said the process takes about 18 months and after that we would have a better idea of what deficits will be permanent and which ones are temporary. This process is also the reason why I was sleeping so much. After a lifetime of insomnia and getting by rather cheerfully on 5-6 hrs sleep per day, suddenly requiring 12-16 hours sleep a day was frightening. I'd be lying if I said I never wished to sleep in once in awhile but this continual exhaustion was not what I had in mind. He explained my brain needed the "downtime" to rewire around damaged areas, and try to fix what it could. I'd had too many concussions already, so my "neuroplasticity" (the brain's ability to rebound) had seen better days. So I was to go with the flow and sleep and while I was sleeping my brain would heal what it could. And I should not be too upset about sleeping so much, but be thrilled I got to wake up every day. The wierd episode I had with the cord was the kind of confusion that many coma patients go through in the first couple of weeks after they wake up. In me it was probably a sign of how narrowly I missed having a coma.
I was absolutely not allowed to have anymore concussions. IF I woke up from another one, the chances were good I would not remember much of anything. Knowing how prone I've been to concussions in my life, and how brain injuries tend to make people even more prone to poor judgment, and having taken care of a few amnesia patients in the hospital myself, one of the first things I did was get medical ID made. Just in case. Now if I could only remember to wear it! (j/k)
I settled in for a wait, thinking at some point my old familiar rebound would kick in. It didn't. Let's see...18 months of letting my brain sort itself out. The accident was in October '05. This was April '06. That meant changes would keep occurring until March '07. And it seemed such a long time distant. Being an artist, sometimes my mind's eye lets me see an analogy of my world as a walk through a painting. In this one the scenery was like a narrow dusty path uphill through bleak leafy winter woods so thick with the tall trunks of evergreen trees you couldn't see past the first few feet, with a heavily fogged sky peaking through the canopy above, with no way to see what lay ahead, and no horizon in the distance.
Wednesday, January 28, 2009
Tuesday, January 27, 2009
Down the Rabbit Hole
I've had a number of people asking me to start blogging my life experience because the last 3 years in particular have been so far from "normal" perception that it holds interest, but part of the problem is that I have trouble actually talking about it for very long and for curious people that's apparently somewhat frustrating. I'm a curious soul so I can relate, and this is an effort to indulge those like myself in that regard. I found out recently that there's a word for my trouble talking and it's called Dysarthria, it's part of a group of communication disorders known as Aphasia. It makes conversation a lot more work than it used to be. Explaining things in text is just easier. Nobody cares about the long pauses. My train of thought is hard to lose while writing because it's right in front of me. Recently we put the last of the large pieces of this very complex neurological puzzle together, and since I have a pretty good view of the Big Picture now, and things make more sense, it seemed like a good time to start writing about the 3 year journey to the virtual hilltop where we can finally see the forest AND the trees. But 3 years covers a lot of information so it will have to be done as installments.
In October of 2005 I had an accident at a fully socialized kennel, where I worked. "Fully socialized" means that the dogs are temperament tested and allowed to run loose together in large enclosures and not stuck in kennel cages. In true California style, it was very "progressive". Almost all our dogs were repeat clients so we knew them well, knew what kind of behavior to reasonably expect from them, and it was really a ton of fun. Most of the time it was a "dream job" for a lifelong dog lover, even though it had nothing to do with my degree work, and I felt very lucky to get paid to have so much fun! The dogs had 2 acres of hillside to run on, an in-ground pool to swim in with supervision, a 10,000 square foot enclosed gravel yard to chase balls in, play stick games, and wrestle with each other and lounge in the sun, and numerous couches to nap on together inside when it was raining. It was a home away from home for most of these dogs and it was usually wonderful for them because there was rarely any of the stress in this environment that there normally is in traditional kennels, and it was a godsend for people who worked long hours but had a dog with a high energy level and needed an outlet for it to curb destructive behavior at home. However, this socialized environment also put a greater stress on dogs to "know their own language", so that their vocal and body language communications didn't confuse other dogs.
One sunny October day, 2 of us had taken about 10 or 15 of the largest dogs down the 2 acre hillside for a run, because tired dogs are usually good dogs. This is Southern California and fire ants are common. One of the sweetest dogs had apparently gotten a fire ant in his paw and he was yelping and crying and carrying on like somebody was trying to cut his paw off, and he would not stand up on his feet to walk. Although it was against my own personal safety rule to attend a hurt dog in a crowd of other dogs this dog was being so pitiful that I immediately knelt down in a fit of compassion and took a look at his paw. A very tall Newfoundland dog innocently gazed over my shoulder in curiosity to see what I was doing and that's where the trouble started. In a dog or wolf pack, this is an act of domination. A boxer dog was out with us that day and he was a regular client, very well trained, temperament tested and passed, but we all knew he had a little bit of a short fuse. I presume in defense of my authority, he launched an attack on the Newfoundland from the opposite side of me, and he thoughtlessly went over my shoulders and skull to do it, pushing me to the ground. A huge dog fight started on top of me and it was absolutely a trainer or kennel tech's worst nightmare. I'm sure had it been filmed it would've been one of those drama video's you see on "Life's Scariest Moments" or something where the dust clears and you are on the edge of your seat going "Are they dead??"
I got up after the fight was broken up and dusted myself off, and I was remarkably okay. No broken bones. No bad cuts either. But my ears were really ringing loudly, my head felt weird, my neck ached, and I knew I was probably going to have some whiplash and a mild concussion. I'd had concussions before, and whiplash, and I had been a nurse so I assumed I had a handle on the situation and a trip to the doctor was going to tell me nothing I didn't already know, and there was nothing they could do for me that I couldn't do for myself. I am stubbornly independent that way. I went home early with a headache, which I expected to last maybe 3 days until the concussion resolved. A week later everything was worse, not better. I couldn't move my neck at all. So I went to see my general practitioner, asked for help, and the medical adventure began. The next month a Neurosurgeon told me that I had had a concussion, and whiplash (No, really? lol), and I also had been born with a mild cerebellum problem called Arnold Chiari Malformation, and perhaps that complicated my concussion a little bit. Oh, and I had migraines. He excused me so that he could attend to a burger and fries that were calling to him from the next room. But I still had one last question, so I called him back and pointed at a white spot in the center of my spinal cord on one of the Open MRI films and asked "What's this?" He says "Oh, that's a Retained Central Spinal Canal, from childhood. Nothing to worry about." Now a soft drink was calling his name too, so I let him go.
My gut instinct was telling me he was missing something. I had no solutions for the problems that weren't going away and I was having a really difficult time talking about it. I don't mean emotionally, I mean it was difficult to put a sentence together and get it out right and be understood. He did refer me to a pain specialist for my migraines. When I told him I had migraine aura almost all the time for the last couple of months he enthusiastically asked me "Oh, you mean like psychics see around people?" and I thought, "Uh, was that supposed to be funny? Oh no, I think he's being serious. That's frightening.", and I excused myself. I gave up on the doctors for awhile and decided I just needed time.
The line was drawn for me one day a few months later when a piece of grooming equipment wouldn't work and I unplugged it from the wall and thought "Oh my! Wow, that is one broken cord! Plugs don't break like that every day!" One of my coworker/friends was standing beside me looking at the same plug and she didn't look surprised at all. Now, if she was seeing what I was seeing she should've had some sort of reaction, a shocked look, a gasp of surprise, something. After all, the prongs were broken off of the wall and stuck in the cord instead of the other way around like they were supposed to be. And there was a very long silent pause while I took a moment to figure out what was wrong with this situation. How could this not be as obvious a surprise to her as it was to me? (insert Jeopardy! jingle here as the moment ticks by). My brain reeled as the incorrect perception slowly reversed itself. It dawned on me what I had expected to see as a "correct" cord was prongs sticking out of the wall, and an empty socket on the end of the cord, completely opposite of how most of the electrical cords in the world work, including this one. There was nothing actually wrong with the cord at all. Was I losing my mind??? Is this how the little old people get the gas and brake mixed up and end up plowing into an open market? What's wrong with me??
My friend asked if I was okay and my very honest answer was "No. I am definitely NOT okay." but I couldn't explain what was wrong. I couldn't explain what I had seen either, not until later. It was very much an Alice in Wonderland type experience but not the type they make into a fun park ride. This scared the hell out of me. I prayed this was a one time deal but deep down I was scared it wouldn't be.
I spoke about this to one of my new friends with Chiari who told me that this definitely was NOT a chiari symptom and that Neurosurgeon had obviously missed something important. She had met another Neurosurgeon recently and had a lot of respect for him and she got me into see him. He turned out to be a brain and spinal cord injury specialty Neurosurgeon and he had some real answers, which will be the subject of my next post.
In October of 2005 I had an accident at a fully socialized kennel, where I worked. "Fully socialized" means that the dogs are temperament tested and allowed to run loose together in large enclosures and not stuck in kennel cages. In true California style, it was very "progressive". Almost all our dogs were repeat clients so we knew them well, knew what kind of behavior to reasonably expect from them, and it was really a ton of fun. Most of the time it was a "dream job" for a lifelong dog lover, even though it had nothing to do with my degree work, and I felt very lucky to get paid to have so much fun! The dogs had 2 acres of hillside to run on, an in-ground pool to swim in with supervision, a 10,000 square foot enclosed gravel yard to chase balls in, play stick games, and wrestle with each other and lounge in the sun, and numerous couches to nap on together inside when it was raining. It was a home away from home for most of these dogs and it was usually wonderful for them because there was rarely any of the stress in this environment that there normally is in traditional kennels, and it was a godsend for people who worked long hours but had a dog with a high energy level and needed an outlet for it to curb destructive behavior at home. However, this socialized environment also put a greater stress on dogs to "know their own language", so that their vocal and body language communications didn't confuse other dogs.
One sunny October day, 2 of us had taken about 10 or 15 of the largest dogs down the 2 acre hillside for a run, because tired dogs are usually good dogs. This is Southern California and fire ants are common. One of the sweetest dogs had apparently gotten a fire ant in his paw and he was yelping and crying and carrying on like somebody was trying to cut his paw off, and he would not stand up on his feet to walk. Although it was against my own personal safety rule to attend a hurt dog in a crowd of other dogs this dog was being so pitiful that I immediately knelt down in a fit of compassion and took a look at his paw. A very tall Newfoundland dog innocently gazed over my shoulder in curiosity to see what I was doing and that's where the trouble started. In a dog or wolf pack, this is an act of domination. A boxer dog was out with us that day and he was a regular client, very well trained, temperament tested and passed, but we all knew he had a little bit of a short fuse. I presume in defense of my authority, he launched an attack on the Newfoundland from the opposite side of me, and he thoughtlessly went over my shoulders and skull to do it, pushing me to the ground. A huge dog fight started on top of me and it was absolutely a trainer or kennel tech's worst nightmare. I'm sure had it been filmed it would've been one of those drama video's you see on "Life's Scariest Moments" or something where the dust clears and you are on the edge of your seat going "Are they dead??"
I got up after the fight was broken up and dusted myself off, and I was remarkably okay. No broken bones. No bad cuts either. But my ears were really ringing loudly, my head felt weird, my neck ached, and I knew I was probably going to have some whiplash and a mild concussion. I'd had concussions before, and whiplash, and I had been a nurse so I assumed I had a handle on the situation and a trip to the doctor was going to tell me nothing I didn't already know, and there was nothing they could do for me that I couldn't do for myself. I am stubbornly independent that way. I went home early with a headache, which I expected to last maybe 3 days until the concussion resolved. A week later everything was worse, not better. I couldn't move my neck at all. So I went to see my general practitioner, asked for help, and the medical adventure began. The next month a Neurosurgeon told me that I had had a concussion, and whiplash (No, really? lol), and I also had been born with a mild cerebellum problem called Arnold Chiari Malformation, and perhaps that complicated my concussion a little bit. Oh, and I had migraines. He excused me so that he could attend to a burger and fries that were calling to him from the next room. But I still had one last question, so I called him back and pointed at a white spot in the center of my spinal cord on one of the Open MRI films and asked "What's this?" He says "Oh, that's a Retained Central Spinal Canal, from childhood. Nothing to worry about." Now a soft drink was calling his name too, so I let him go.
My gut instinct was telling me he was missing something. I had no solutions for the problems that weren't going away and I was having a really difficult time talking about it. I don't mean emotionally, I mean it was difficult to put a sentence together and get it out right and be understood. He did refer me to a pain specialist for my migraines. When I told him I had migraine aura almost all the time for the last couple of months he enthusiastically asked me "Oh, you mean like psychics see around people?" and I thought, "Uh, was that supposed to be funny? Oh no, I think he's being serious. That's frightening.", and I excused myself. I gave up on the doctors for awhile and decided I just needed time.
The line was drawn for me one day a few months later when a piece of grooming equipment wouldn't work and I unplugged it from the wall and thought "Oh my! Wow, that is one broken cord! Plugs don't break like that every day!" One of my coworker/friends was standing beside me looking at the same plug and she didn't look surprised at all. Now, if she was seeing what I was seeing she should've had some sort of reaction, a shocked look, a gasp of surprise, something. After all, the prongs were broken off of the wall and stuck in the cord instead of the other way around like they were supposed to be. And there was a very long silent pause while I took a moment to figure out what was wrong with this situation. How could this not be as obvious a surprise to her as it was to me? (insert Jeopardy! jingle here as the moment ticks by). My brain reeled as the incorrect perception slowly reversed itself. It dawned on me what I had expected to see as a "correct" cord was prongs sticking out of the wall, and an empty socket on the end of the cord, completely opposite of how most of the electrical cords in the world work, including this one. There was nothing actually wrong with the cord at all. Was I losing my mind??? Is this how the little old people get the gas and brake mixed up and end up plowing into an open market? What's wrong with me??
My friend asked if I was okay and my very honest answer was "No. I am definitely NOT okay." but I couldn't explain what was wrong. I couldn't explain what I had seen either, not until later. It was very much an Alice in Wonderland type experience but not the type they make into a fun park ride. This scared the hell out of me. I prayed this was a one time deal but deep down I was scared it wouldn't be.
I spoke about this to one of my new friends with Chiari who told me that this definitely was NOT a chiari symptom and that Neurosurgeon had obviously missed something important. She had met another Neurosurgeon recently and had a lot of respect for him and she got me into see him. He turned out to be a brain and spinal cord injury specialty Neurosurgeon and he had some real answers, which will be the subject of my next post.
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