Daim Bramaged?

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.