These are some notes I made today about things I deal with, how things are going for me. This blog will be a sort of history for me, to log how things went after I broke my neck. But I also want to keep up to date information and reflections going, especially for the next six months as I face a surgery or two in NY.
One thing I wanted to mention that was something new happened a few nights ago. I was trying to eat a banana, very soft. And it was SO painful because the gentle biting down
to bite off the banana caused such pain suboccipitally. With TMJ, I've experienced trouble with opening wide enough to eat something, and slight pain, but this was very different. It was the biting down that caused the pain and it was a bit scary.
I have been experiencing more breathing issues. Usually at bedtime, but at other times too. I would suppose it is ALL linked to doing anything! If I just sat and did nothing all day, then I am sure some of these symptoms would lessen. But that would not be good for me emotionally or mentally. Doing light garden care and housework, in 15 or 30 minute segments seems to work, but then again, absolutely anything I do, I will pay for it.
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The book of Bedside Blessings (thank you, Kim!) two nights ago really spoke to me. To wait upon God's timing, and to seek His counsel. And until I do seek His counsel, things will not come to pass. I relate this all to my anxieties in trying to get the surgeries lined up on MY timing, and bugging Dr. B about it. I need to trust Him more.
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One thing that I deal with that is neurological in nature is that if I do anything that is straining at all, I work up a sweat. I break out on my forehead, at the hairline, with sweat and this affects me all over, making me very weak and sick feeling. It all springs from even light straining. Many things cause us to strain, things we are not aware of unless we suffer from it. For me, I've come to understand that ALL straining goes through the upper C spine, skull base area!
Monday, September 10, 2007
So....this is rare!
I will explain later on just what happened to me, but I wanted to emphasize that this is a rare injury. However, this statement must be qualified.
Most doctors who treat a patient suffering from a Jefferson Fracture will never before have seen this injury.
Most patients do not survive this injury (a 4-plc Jefferson Fracture).
If you meet me, I will probably be the only person you will EVER meet in your lifetime who has suffered this exact injury.
I was told by one neurologist that it's not that this injury is so rare, but few doctors actually see a patient with this injury because the victim usually does not survive. "They are not coming to us, the doctors. They are going to morgues," I was told.
A UCLA expert muttered, after reviewing my CT scans from the day of injury, "Not many people walk away from that one!"
Thus, it has been my own challenge over the last 3.5 years to find a doctor and/or specialist who has every dealt with someone with this injury. My physiatrist told me, when I asked, that yes, he'd had a couple of people over the last 25 years with a C1 fracture, but "not one as bad as yours."
And almost as importantly, I have no peers. I have no one I can talk to who has gone through this same injury. In fact, I have never met anyone who has experienced any fracture of the C1. I did meet a woman last week who had fractured her C2 and C3 in a riding accident, and she had had a halo on "for months."
I've never seen anyone online, in a support group, who has this injury. There is NO support group specifically for those who've suffered a Jefferson Fracture. I can visit a spinal cord injury site, but have not read any posts from anyone who experienced the same thing I did. This does lead to some feelings of isolation. When I mention to some people that I "broke my neck," some will not quite "get" the severity of my situation. They've known people who have broken their necks and gone back to bullriding or riding race horses. There's nothing, I've learned, that I can do to explain. It's not important to me that they understand.
When I asked my neurosurgeon if he'd ever seen a Jefferson Fracture before, he answered, "Of course...it is the most common of C1 fractures." But this is a sketchy answer at best. How many C1 fractures has he seen then? How many survived? But I did not explore the questions any further. I could read between the lines.
Because of this isolation, I have found friendship and support within the community of those with Arnold Chiari Malformation. I have not been diagnosed with ACM, however, I share some of the same symptoms and challenges, the neurological ones. I now help serve as a moderator at the Chiari Connection International support board. But...more about Chiari later!
Most doctors who treat a patient suffering from a Jefferson Fracture will never before have seen this injury.
Most patients do not survive this injury (a 4-plc Jefferson Fracture).
If you meet me, I will probably be the only person you will EVER meet in your lifetime who has suffered this exact injury.
I was told by one neurologist that it's not that this injury is so rare, but few doctors actually see a patient with this injury because the victim usually does not survive. "They are not coming to us, the doctors. They are going to morgues," I was told.
A UCLA expert muttered, after reviewing my CT scans from the day of injury, "Not many people walk away from that one!"
Thus, it has been my own challenge over the last 3.5 years to find a doctor and/or specialist who has every dealt with someone with this injury. My physiatrist told me, when I asked, that yes, he'd had a couple of people over the last 25 years with a C1 fracture, but "not one as bad as yours."
And almost as importantly, I have no peers. I have no one I can talk to who has gone through this same injury. In fact, I have never met anyone who has experienced any fracture of the C1. I did meet a woman last week who had fractured her C2 and C3 in a riding accident, and she had had a halo on "for months."
I've never seen anyone online, in a support group, who has this injury. There is NO support group specifically for those who've suffered a Jefferson Fracture. I can visit a spinal cord injury site, but have not read any posts from anyone who experienced the same thing I did. This does lead to some feelings of isolation. When I mention to some people that I "broke my neck," some will not quite "get" the severity of my situation. They've known people who have broken their necks and gone back to bullriding or riding race horses. There's nothing, I've learned, that I can do to explain. It's not important to me that they understand.
When I asked my neurosurgeon if he'd ever seen a Jefferson Fracture before, he answered, "Of course...it is the most common of C1 fractures." But this is a sketchy answer at best. How many C1 fractures has he seen then? How many survived? But I did not explore the questions any further. I could read between the lines.
Because of this isolation, I have found friendship and support within the community of those with Arnold Chiari Malformation. I have not been diagnosed with ACM, however, I share some of the same symptoms and challenges, the neurological ones. I now help serve as a moderator at the Chiari Connection International support board. But...more about Chiari later!
A Jefferson Fracture
First, I thought I'd explain just what a Jefferson Fracture is.
It is a 3 or 4 place fracture of the C1 vertebra. Simple as that!
Research I have done on this injury reveals that it is most usually suffered by males (of which I am not); it is usually a sports-related injury, occuring most often from diving and equestrian accidents.
You can easily visualize what happens, if you wish.
The C1 is different than all other vertebrae in that it is comprised of one solid ring of bone. The C1 acts as a washer of sorts between the skull and the C2 and rest of the spine. It is called the Atlas bone, for like the mythical figure of old, this Atlas holds the weight of the world (aka skull) upon its shoulders.
To say it is a pretty important part of the spine, I guess, would be an understatement. Its proximity to the skull base and cranial nerves means that movement of only millimeters can have a profound effect.
When a person lands with great velocity onto the very top of their head (as in diving into shallow water), the skull is pushed with great force unto the C1 ring. Something's gotta give! A Jefferson Fracture occurs when that C1 breaks in 3 or 4 places.
Our anatomy in this area is all held in place by ligaments, including the ever-important "Transverse Ligament." In a STABLE Jefferson Fracture, the burst fracture of the C1 springs apart, and the ligaments pull things right back into shape. This is still a serious situation, but the ligaments still being functional means that the fracture is stable and more conservative measures can be taken for treatment.
However, if the burst fractures go wide enough, this is indicative that the ligaments were all ruptured, broken ("ripped and torn" my neurosurgeon told me), stretched beyond compare and unable to pull the C1 back into position. In fact, radiologists are taught to recognize that a Jefferson fracture is unstable and the tranverse ligament is compromised by how far gapped the fractured sites are.
When this happens, an UNSTABLE Jefferson Fracture has occurred and the treatment for this is much more aggressive. Websites and doctors seem to vary a little bit about the course of treatment, but the "minimal standard of care" seems to be traction in the hospital for a week or so, then a halo being installed for the patient to wear for 3 months or longer. The point of all of this is obviously: stability while things are healing. This stability is of utmost importance.
The C2 is also in the picture, as the odontoid (or dens, a part of the C2) sticks up into the off-center of the C1. The odontoid is something of a bony finger or tooth and makes the C2 a unique vertebra, as well. The transverse ligament travels between the C1 and C2.
Links are posted on this page to show further information on Jefferson Fractures, if you are further interested.
It is a 3 or 4 place fracture of the C1 vertebra. Simple as that!
Research I have done on this injury reveals that it is most usually suffered by males (of which I am not); it is usually a sports-related injury, occuring most often from diving and equestrian accidents.
You can easily visualize what happens, if you wish.
The C1 is different than all other vertebrae in that it is comprised of one solid ring of bone. The C1 acts as a washer of sorts between the skull and the C2 and rest of the spine. It is called the Atlas bone, for like the mythical figure of old, this Atlas holds the weight of the world (aka skull) upon its shoulders.
To say it is a pretty important part of the spine, I guess, would be an understatement. Its proximity to the skull base and cranial nerves means that movement of only millimeters can have a profound effect.
When a person lands with great velocity onto the very top of their head (as in diving into shallow water), the skull is pushed with great force unto the C1 ring. Something's gotta give! A Jefferson Fracture occurs when that C1 breaks in 3 or 4 places.
Our anatomy in this area is all held in place by ligaments, including the ever-important "Transverse Ligament." In a STABLE Jefferson Fracture, the burst fracture of the C1 springs apart, and the ligaments pull things right back into shape. This is still a serious situation, but the ligaments still being functional means that the fracture is stable and more conservative measures can be taken for treatment.
However, if the burst fractures go wide enough, this is indicative that the ligaments were all ruptured, broken ("ripped and torn" my neurosurgeon told me), stretched beyond compare and unable to pull the C1 back into position. In fact, radiologists are taught to recognize that a Jefferson fracture is unstable and the tranverse ligament is compromised by how far gapped the fractured sites are.
When this happens, an UNSTABLE Jefferson Fracture has occurred and the treatment for this is much more aggressive. Websites and doctors seem to vary a little bit about the course of treatment, but the "minimal standard of care" seems to be traction in the hospital for a week or so, then a halo being installed for the patient to wear for 3 months or longer. The point of all of this is obviously: stability while things are healing. This stability is of utmost importance.
The C2 is also in the picture, as the odontoid (or dens, a part of the C2) sticks up into the off-center of the C1. The odontoid is something of a bony finger or tooth and makes the C2 a unique vertebra, as well. The transverse ligament travels between the C1 and C2.
Links are posted on this page to show further information on Jefferson Fractures, if you are further interested.
First Day on the Blog
In an effort to begin the process of writing a book about my experiences after suffering a broken neck, I thought I'd begin this blog as a sort of record. Also, I'd like to have a place to post inspirational thoughts, either ones that come to me, or ones I've read.
I've thought a long time before starting this. First of all, I just couldn't think of anyone I "know" would be interested enough to read my day-to-day thoughts. This is not a condemnation of family or friends, but more about how much my thoughts are worth, I'd suppose. Then I remembered all of the people I know who are sick and suffering; people I've met online with Chiari Malformation and/or syringomyelia; Ehlers Danlos Syndrome; Tethered Cord Syndrome; and other conditions. These people might be interested enough to read here once in awhile. And I might be able to offer some support from time to time.
So, with this ungainly "wagons ho!" I'll begin my blog and see how it evolves and what it becomes.
Welcome to all who are reading this. The door is open, the latch string is left out, the porch light is on.
I've thought a long time before starting this. First of all, I just couldn't think of anyone I "know" would be interested enough to read my day-to-day thoughts. This is not a condemnation of family or friends, but more about how much my thoughts are worth, I'd suppose. Then I remembered all of the people I know who are sick and suffering; people I've met online with Chiari Malformation and/or syringomyelia; Ehlers Danlos Syndrome; Tethered Cord Syndrome; and other conditions. These people might be interested enough to read here once in awhile. And I might be able to offer some support from time to time.
So, with this ungainly "wagons ho!" I'll begin my blog and see how it evolves and what it becomes.
Welcome to all who are reading this. The door is open, the latch string is left out, the porch light is on.
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