...I have posted here on my blog. It seems uncanny that the very day I decide to return to my blog and make an effort to remain consistent with it, I find that my last post here was exactly one year plus one day ago.
I think I'm finally finding my new voice.
Some of my readers may remember my old voice, the voice of a long-time horse-breaker and confident ranch wife. The proud mother of a ranch kid and gifted pilot and a teacher of my son's homeschool program. A singer with a little trio of strong women who played and sang bluegrass gospel; and a Cowboy Poet, one who had seen much of the genre as it began, grew and flourished. One who presented her poetry often, sensing that her value lay in her authenticity as a cowboy who drew cowboy wages and who, well, loved every minute of it.
This year, April 9, 2014 will mark the tenth anniversary since much of the voice which gave me confidence and comfort became lost to me. Over those years, I also experienced, in powerful emotions, the loss of my identity as day after day became week upon week, months and years until now, a decade.
It seems amazing to me that so many years have passed since my life suddenly changed in ways I had no way of conceiving. Where did that decade go? Ten years ago, I was a strong, tanned, thin and active, young 52 years old. Today, I am 62, and, on a good day, I feel as though I am 80. My abilities have changed dramatically. Something unexpected in life happened to me, and thus, I became unable to do most of the things that had been of utmost importance to me.
Over the years, this blog became a friend to me; it afforded me a way to put words to the battles I was waging, the changes I had no control over, and the challenges I have had with accepting my new life. Although a full year has flown by since visiting here, I still thought of this blog many times and was always blessed with the confidence that the things I experienced during my ongoing "recovery" had been documented and remained.
A new voice remains. And I'm anxious to try it out.
Monday, March 31, 2014
Saturday, March 30, 2013
A good day!!
Today is Saturday, the day before Easter.
Yesterday was Friday...Good Friday.
Nine years ago, on a golden Good Friday, I went out to the barn where my four charges were waiting for me to disperse grain through the little doors that open above the corner feed troughs. I probably swept out the alleyway, and then caught a tall, Paint gelding named Jedi. At the time, he was about nine years old, and he loved to jump. I loved to jump, too, so we made a good team.
As I curry-combed his shiny bay-and-white coat over his back where the saddle would be placed, I noticed that he flinched from the touch of the steel curry. Jedi is a long-backed horse, in my book.
Such a horse is not the greatest for soundness...horses with long-backs break down earlier in their careers than short-backed horses do. However, those who know jumping horses have written that a horse with a long back has "scope." He can jump out wider and he can usually jump higher than a stocky, short-backed horse. Individual horses have broken this rule of thumb many times and that is because the heart of a horse is the bottom-line, deciding factor. The heart, the willingness to do for his rider, can make up for hundreds of comformation faults.
I took notice of the flinch, and told myself that I should call the horse-chiropractor and have him come out to give Jedi an "adjustment." Chris had done Jedi a lot of good, a lot of "noticeable" good
and I trusted him and his son, who worked with his dad, to do what was best for all of the stable's horses.
About an hour later, I realized I was on the ground in great pain. I felt electricity pulsing rapidly through my arms,legs, feet and hands, painfully so. My brain, which I would later be told had been damaged by the fall I took onto the top of my head like a pile-driver, was probably stunned and confused, but I knew one thing only: that painful electrical sensation could mean paralysis. It's quite an experience to be alone, except for a grazing horse nearby, and respond viscerally to things around me. Nothing else registered except: this means I'll be paralyzed!
By instinct borne of a strong faith in Jesus Christ since 1978, 26 years earlier, I called out to God and I remember the exact words: "Please don't let me be paralyzed! Please don't let me be paralyzed."
I got myself up into a kneeling position and at that moment, I became aware that I had nothing with which to hold up my head. My head lolled forward, but I could not pick it up to look forward or sideways. I had nothing in my arsenal of usual muscle movements to control my head. Years later, when I was interviewed and examined by a true neurosurgeon who cared about his patient, I was told that the trauma had ruptured (in his words "Torn, Ripped, Demolished!")all of the ligaments in my neck and back of the head.
However, at that moment, all I knew was that I had to get up and walk to the house, I knew I would not wait here for someone to come looking for me. Out on a ranch, that could be days before anyone realized I was gone longer than I should have been! And then, I was a person who did what needed done herself, who did not wait for help. I'd move big rocks in my flower garden alone; I'd dispatch a rattler in a horse's corral; I'd rope a wild filly and dally her off to a nearby snubbing post and, then, lean into the charged, "danger zone" while the filly's eyes rolled back in her head and, gingerly, with whispered, beseeching prayer, buckle on a halter, a piece of equipment never seen by this horse, even though she was 3 years old. That done, I'd loosen the neck rope and she'd get back on her feet and I had gotten the job done alone. My father used to warn me with the same prophetic words, over and over: you're gonna break your neck someday breakin' colts! THEN who is gonna raise your kid?"
And besides, doing the job and not asking for help is just what cowboys do. No big deal. So, I thought this was no big deal either.
I stood up on shaky legs, not giving a single thought to my glasses that were ground into the hard, summer dirt of the sun-baked, Central California clay. I needed them for any sort of vision, but seeing things wasn't the top priority in that dusty moment. Noticing Jedi grazing on short grass nearby, his buckled reins having slipped forward to rest on his poll, thereby presenting an awaiting trap that we all know will occur if left to its own devices: he'd put a leg through the loop, lift up his head and then pitch a fit, break the reins, run back to the barn, it was instinctive to me to do whatever I needed to do to save the horse and the equipment, so I lumbered over, bent at the waist to allow my lolling head to dangle downward, reached out to feel for the reins and upon my electrically-charged fingers finding them, I lifted the reins lightly over his ears and gave a little tug to get him started.
I nearly fainted right there!
Shiver! I quickly realized a piece of anatomy I would have known if I'd been more clear-headed: hands and arms are connected to the upper neck (termed the Cervical Spine in medical jargon). Jedi didn't immediately come along with me, which resulted in a small tug of resistance, which zapped along injured nerves straight through to the back of my head like a 10 lb sledge.
But, Jedi was a good, broke horse and, when he understood I was wanting to lead him, he obliged. I lead him a short ways over to our house and under the carport to the back door, thankful that I'd led him back and forth under this very carport at this same spot several times the day before, calling out to Pete to look at how calm and willing this big, tall boy was. With head still dangling, I opened the door, and called out to Pete to "come 'ere, quick!"
The first hospital didn't want me after they took the first CT-scan. They loaded me back up into another ambulance and sent me for a ride down-county to another hospital 30 mi away.
Every iota of brain activity and muscle movement, recognition, awareness, thoughts and plans changed in that instant back at the ranch when I first woke up. I was told by a neurosurgeon that I'd broken my C1 into four pieces; 3 years later, another neurosurgeon would tell me that I'd also suffered "internal decapitation." 8 years later, I finally found a neurosurgeon who would take a chance on me, and would fuse my skull and my C1 to my C2 with long, titanium screws, wire and cadaver bone. During those 8 years previous to finding this doctor, I'd worn large, stiff "Aspen neck braces" or an extremely rigid, "Cervical Thoracic Orthotic" vest that went from my waist to my forehead. I'd searched and searched for a surgeon to help me, and had been seen by nine of them before the tenth would take pity upon me and be willing to try.
Good Friday....some folks might guess that I'd not think of it as having been a very good Friday back then when a young-spirited, strong, tanned, slim, 52-year-old woman saddled up to do one of the things she'd been blessed to have been paid to do for so much of her life. I don't really recall the pain. But I do first recall the sensation of soaring when Jedi had jumped that fence that day, the feeling of freedom and exhiliration and everything right in my world. That was the jump he took right before the oxer when he had suddenly put the brakes on and launched me (as some would later call it)up and forward like a "lawn dart." I remember certain events, but I always remember that feeling of pure, unblighted joy when, right before the jump where my life would change forever, that 16.2 hand, handsome Paint gelding had cantered up to a 3 and a half foot fence and sailed over it in a leap high enough to clear a jump twice the height!
It WAS indeed a Good Friday! I survived. Today, I can walk and I can talk. The results usually seen by most families whose loved one has suffered the same injuries as I did that day did NOT happen to me. Over the years, I have heard many neurosurgeons, some were the best in the country, say that they do not know much about how to treat a Jefferson Fracture (one that is combined with Atlanto Occipital Dislocation) because most folks who have this end up in the morgue, not the ER.
Good? Oh yes, indeed!
Yesterday was Friday...Good Friday.
Nine years ago, on a golden Good Friday, I went out to the barn where my four charges were waiting for me to disperse grain through the little doors that open above the corner feed troughs. I probably swept out the alleyway, and then caught a tall, Paint gelding named Jedi. At the time, he was about nine years old, and he loved to jump. I loved to jump, too, so we made a good team.
As I curry-combed his shiny bay-and-white coat over his back where the saddle would be placed, I noticed that he flinched from the touch of the steel curry. Jedi is a long-backed horse, in my book.
Such a horse is not the greatest for soundness...horses with long-backs break down earlier in their careers than short-backed horses do. However, those who know jumping horses have written that a horse with a long back has "scope." He can jump out wider and he can usually jump higher than a stocky, short-backed horse. Individual horses have broken this rule of thumb many times and that is because the heart of a horse is the bottom-line, deciding factor. The heart, the willingness to do for his rider, can make up for hundreds of comformation faults.
I took notice of the flinch, and told myself that I should call the horse-chiropractor and have him come out to give Jedi an "adjustment." Chris had done Jedi a lot of good, a lot of "noticeable" good
and I trusted him and his son, who worked with his dad, to do what was best for all of the stable's horses.
About an hour later, I realized I was on the ground in great pain. I felt electricity pulsing rapidly through my arms,legs, feet and hands, painfully so. My brain, which I would later be told had been damaged by the fall I took onto the top of my head like a pile-driver, was probably stunned and confused, but I knew one thing only: that painful electrical sensation could mean paralysis. It's quite an experience to be alone, except for a grazing horse nearby, and respond viscerally to things around me. Nothing else registered except: this means I'll be paralyzed!
By instinct borne of a strong faith in Jesus Christ since 1978, 26 years earlier, I called out to God and I remember the exact words: "Please don't let me be paralyzed! Please don't let me be paralyzed."
I got myself up into a kneeling position and at that moment, I became aware that I had nothing with which to hold up my head. My head lolled forward, but I could not pick it up to look forward or sideways. I had nothing in my arsenal of usual muscle movements to control my head. Years later, when I was interviewed and examined by a true neurosurgeon who cared about his patient, I was told that the trauma had ruptured (in his words "Torn, Ripped, Demolished!")all of the ligaments in my neck and back of the head.
However, at that moment, all I knew was that I had to get up and walk to the house, I knew I would not wait here for someone to come looking for me. Out on a ranch, that could be days before anyone realized I was gone longer than I should have been! And then, I was a person who did what needed done herself, who did not wait for help. I'd move big rocks in my flower garden alone; I'd dispatch a rattler in a horse's corral; I'd rope a wild filly and dally her off to a nearby snubbing post and, then, lean into the charged, "danger zone" while the filly's eyes rolled back in her head and, gingerly, with whispered, beseeching prayer, buckle on a halter, a piece of equipment never seen by this horse, even though she was 3 years old. That done, I'd loosen the neck rope and she'd get back on her feet and I had gotten the job done alone. My father used to warn me with the same prophetic words, over and over: you're gonna break your neck someday breakin' colts! THEN who is gonna raise your kid?"
And besides, doing the job and not asking for help is just what cowboys do. No big deal. So, I thought this was no big deal either.
I stood up on shaky legs, not giving a single thought to my glasses that were ground into the hard, summer dirt of the sun-baked, Central California clay. I needed them for any sort of vision, but seeing things wasn't the top priority in that dusty moment. Noticing Jedi grazing on short grass nearby, his buckled reins having slipped forward to rest on his poll, thereby presenting an awaiting trap that we all know will occur if left to its own devices: he'd put a leg through the loop, lift up his head and then pitch a fit, break the reins, run back to the barn, it was instinctive to me to do whatever I needed to do to save the horse and the equipment, so I lumbered over, bent at the waist to allow my lolling head to dangle downward, reached out to feel for the reins and upon my electrically-charged fingers finding them, I lifted the reins lightly over his ears and gave a little tug to get him started.
I nearly fainted right there!
Shiver! I quickly realized a piece of anatomy I would have known if I'd been more clear-headed: hands and arms are connected to the upper neck (termed the Cervical Spine in medical jargon). Jedi didn't immediately come along with me, which resulted in a small tug of resistance, which zapped along injured nerves straight through to the back of my head like a 10 lb sledge.
But, Jedi was a good, broke horse and, when he understood I was wanting to lead him, he obliged. I lead him a short ways over to our house and under the carport to the back door, thankful that I'd led him back and forth under this very carport at this same spot several times the day before, calling out to Pete to look at how calm and willing this big, tall boy was. With head still dangling, I opened the door, and called out to Pete to "come 'ere, quick!"
The first hospital didn't want me after they took the first CT-scan. They loaded me back up into another ambulance and sent me for a ride down-county to another hospital 30 mi away.
Every iota of brain activity and muscle movement, recognition, awareness, thoughts and plans changed in that instant back at the ranch when I first woke up. I was told by a neurosurgeon that I'd broken my C1 into four pieces; 3 years later, another neurosurgeon would tell me that I'd also suffered "internal decapitation." 8 years later, I finally found a neurosurgeon who would take a chance on me, and would fuse my skull and my C1 to my C2 with long, titanium screws, wire and cadaver bone. During those 8 years previous to finding this doctor, I'd worn large, stiff "Aspen neck braces" or an extremely rigid, "Cervical Thoracic Orthotic" vest that went from my waist to my forehead. I'd searched and searched for a surgeon to help me, and had been seen by nine of them before the tenth would take pity upon me and be willing to try.
Good Friday....some folks might guess that I'd not think of it as having been a very good Friday back then when a young-spirited, strong, tanned, slim, 52-year-old woman saddled up to do one of the things she'd been blessed to have been paid to do for so much of her life. I don't really recall the pain. But I do first recall the sensation of soaring when Jedi had jumped that fence that day, the feeling of freedom and exhiliration and everything right in my world. That was the jump he took right before the oxer when he had suddenly put the brakes on and launched me (as some would later call it)up and forward like a "lawn dart." I remember certain events, but I always remember that feeling of pure, unblighted joy when, right before the jump where my life would change forever, that 16.2 hand, handsome Paint gelding had cantered up to a 3 and a half foot fence and sailed over it in a leap high enough to clear a jump twice the height!
It WAS indeed a Good Friday! I survived. Today, I can walk and I can talk. The results usually seen by most families whose loved one has suffered the same injuries as I did that day did NOT happen to me. Over the years, I have heard many neurosurgeons, some were the best in the country, say that they do not know much about how to treat a Jefferson Fracture (one that is combined with Atlanto Occipital Dislocation) because most folks who have this end up in the morgue, not the ER.
Good? Oh yes, indeed!
Monday, March 18, 2013
Howdy folks!
Remember me? I'm the one who was keeping this blog going for 6 years...only during the last year, I've been doing a very poor job of keeping this blog!
It's been so long since I've posted that it took me a half hour to figure out how to sign back into it so I could post! Almost a year with no posts! I never thought I'd let it go that long.
It would be perfectly understandable if the followers of this blog, upon seeing no posts from me for this long, have wondered if my Feb. 17, 2012 surgery at OHSU in Portland had completely healed me and I stopped blogging because I was too busy training horses, sky diving, mountain climbing and taking Lance Armstrong's place in the Tour de France!
Alas, that is not the report I am able to give here today. My pain seems to have gone right back up to all-time high levels for me, and the weakness I have has gotten much worse. I have trouble keeping up with housework; I am unable to fly back to see my 88 yr old mother when she is sick or in need of me; I look at our yard (it being close to the first day of Spring, 2013 and the crocuses are all up and the daffies are started to unfurl) and know I simply cannot handle it this year, without intervention from the Lord.
The fusion surgery with the long transarticular screws going up through my C2 up into my C1 with a cadaver-bone patch (or chinking, so think about log cabins) stuffed between the back of my C1 and the skull base (subocciput region)with opes that it would cause bone to appear and knit together has all been a wonderful success! I had ZERO complications with the fusion. I have not worn an Aspen neck collar or a CTO brace since I left the hospital a tad over a year ago. Dr. Ragel said I didn't need it, and so I threw it into the back seat of our Dodge pickup as we left the "Rose City" and motored our way home.
I found tho that I am very uncomfortable driving. I don't necessarily feel like a lot of range of motion was taken from me, but I just cannot turn my head over either shoulder and check for clearance as I begin to back up a vehicle. This scares me out of my wits! I don't want to back out into traffic and get hit; I don't want to run over a child on a bicycle coming up behind me; I want to be safe, and driving feels much less safe to me now.
I can nod or shake my head as I talk with people, something I had learned by rote "not to do." If I did do that pre-surgery, I would suffer big flares of pain for days. It seems like these days, I am able to do that, (such a small thing, isn't it?) but other things bring on those pain flare-ups quite easily.
Bending over and doing anything with my arms, like emptying a dishwasher, making the bed, painting, steam-cleaning a rug, etc.
I am a true example now of a person with an invisible disease! I don't look sick, but I am definitely not "okay!" People tell me I look great, people who haven't seen me in awhile. I have gained a lot of weight and of course, I'm not liking that, but it is the least of my difficulties.
I found an article finally that perfectly describes the condition that plagues me. It is from webmd, published by The Cleveland Clinic. I've known for years that the all-over, chronic, constant, gnawing pain I have is called "Central Pain Syndrome." I am sure I must have posted about this condition at least once in previous blog posts. Just to catch up any new readers (or readers like me, who forget anything that occurred "short term!") our bodies have two nerve systems. One is called the Peripheral Nerve, a good example of PNS (ie Peripheral Nerve System) is stubbing your toe; stabbing a rose thorn into a sensitive finger; cutting your hand with a kitchen knife by accident, etc. These things ALL hurt like the dickins.
Then, the human body has the Central Nervous System. This is the term for the nerves within the brain and spinal cord. This is a different kind of pain. It occurs, often, after a stroke; in people with MS (Multiple Sclerosis); or after brain injury. Years ago, perhaps 3 months after my broken neck injury, a wise neurologist finally ordered a brain MRI, and on the report of that imaging was this finding: I had several lesions on the brain that could point to a demyleniating disease (like MS), a stroke, or brain trauma. Since it was only 3 months post injury and I was healthier than a healthy horse before the injury, it was easy to place the blame on those brain lesions onto "trauma." And that still holds true.
Here is an excerpt from that short article from webmd.com about "Central Pain Syndrome:"
Central pain syndrome is a neurological condition caused by a dysfunction that specifically affects the central nervous system (CNS), which includes the brain, brainstem, and spinal cord.
The disorder occurs in people who have -- or who have experienced -- strokes, multiple sclerosis, Parkinson's disease, brain tumors, limb amputations, brain injuries, or spinal cord injuries. It may develop months or years after injury or damage to the CNS.
The brief article next states the symptoms of CNS, and does a poor job of that! I could add so much more to this statement of symptoms. I would add "almost constant itching above the point of spinal cord injury." My scalp and my face itch "almost always." I try to take a couple Benadryl to help cover it but that really hardly ever works. At night or during the day when trying to nap, I feel a stab of painful itching on an eyebrow; next, up in my nostrils; next, behind one of my eyeballs or under the lower lip or just in front of my ear or.....It often interrupts my sleep and I hate it. Years ago, while perusing the great "central pain" website (ie www.painonline.com ), I again noticed that itching above the level of spinal cord injury and asked the webmaster if itching was a common symptom of CNS, since that is something that plagues me and he responded a firm YES!
The webmd article offers little hope for treatment of CPS:
Central pain syndrome is characterized by a mixture of pain sensations, the most prominent being a constant burning. The steady burning sensation is sometimes increased by light touch. Pain also increases in the presence of temperature changes, most often cold temperatures. A loss of sensation can occur in affected areas, most prominently on distant parts of the body, such as the hands and feet. There may be brief, intolerable bursts of sharp pain on occasion
Finally, there was a statement on this website that really caught my eye. It was a comment upon the fact that stress and high emotions can cause particularly bad flares in pain levels for the sufferer of CNS:
Pain medications often provide little or no relief for those affected by central pain syndrome. However, some antidepressants and anticonvulsants can be useful in treating central pain syndrome. Doctors recommend people with the condition be sedated and the nervous system kept quiet and as free from stress as possible.
So, there it is in black and white. A life sentence of constant pain. CPS also causes any small injury (banging my elbow or getting a paper cut or cracks in my skin on the ends of my fingers, etc) to morph into pain of a much higher level than when experienced before my broken neck, before CPS took over my life.
The statement that stood out the most for me in the webmd article was this one, the last sentence in the piece: Doctors recommend people with the condition be sedated and the nervous system kept quiet and as free from stress as possible. "Doctors recommend people with this condition be sedated..."
"sedated"....and "the nervous system kept quiet and as free from stress as possible."
Let me tell you, NO ONE else in my circle of friends and family can really grasp this condition. I don't blame them! They deserve an award for being as understanding as they are.
Yet, I do try to explain it to them, which ends up with me feeling like a hypochondriac or someone seeking attention. I (perhaps unfoundedly) envision them thinking, "Virginia needs to let this thing go and move on with her life!" And, oh, how I wish I could. But, I find myself trying to explain why I hurt, how I hurt, where I hurt (all over!), not to get their sympathy or attention, but to try to get some feedback from them that they understand.
Thursday, April 19, 2012
waiting....for it to pass...
Lying in bed at 8:30 am...
The muscles in my arms, in particular my deltoids, feel like they are dripping acid...
Deep, profound aching in arms and palms of hands and neck and shoulders...
This is central pain...
Pain that originates in the spinal cord and/or brain...
I've read stroke patients often deal with such pain. I did not know that.
Before.
My dog, on the bed, shifts his position and leans against my back. I yearn for his closeness, expecting the only thing good I could sense right now, his love and loyalty, his warmth and his understanding...
but, please, the pressure causes more pain. Which I will endure in exchange for that good...
waiting...
for oxycodone to ease the aching...remembering my pain doctor telling me, "If the pain doesn't go away in 40 minutes, take another pill."
I thought this was gone after my surgery. I had thought that the stabilization of my head and neck, the miracle of the surgery, had also removed this condition that has haunted my days for years. But...I guess not. I can see now that the higher dose of pain meds was handling this pain. And I've been weaning myself down on the meds, finally, the other day, reaching the dosage plateau I was on "pre-surgery."
So much on the news these days about abuse of oxycodone... the harm it does for so many who need this medication, the families who begin to wrongly judge their loved ones...thankfully, I do not have to deal with this lack of understanding or this misjudgment. Thanks be to God.
I know this will pass. At least, I believe it will. This is the very pain that was keeping me in bed most of the day "pre-surgery." This is the very pain that convinced me to proceed with a dangerous and risky surgery, just knowing I could not continue life that way. Now, like a long-gone ghost that has suddenly returned, it's back. My hope, where I'm placing my confidence, is that the gain from the surgery will be, at least, that this deeply, profound, all-encompassing, life-stopping pain will pass...will pass more quickly than it did before surgery. I have faith that it will. I have faith that all things will eventually be so much better. Please, oh Lord.
The muscles in my arms, in particular my deltoids, feel like they are dripping acid...
Deep, profound aching in arms and palms of hands and neck and shoulders...
This is central pain...
Pain that originates in the spinal cord and/or brain...
I've read stroke patients often deal with such pain. I did not know that.
Before.
My dog, on the bed, shifts his position and leans against my back. I yearn for his closeness, expecting the only thing good I could sense right now, his love and loyalty, his warmth and his understanding...
but, please, the pressure causes more pain. Which I will endure in exchange for that good...
waiting...
for oxycodone to ease the aching...remembering my pain doctor telling me, "If the pain doesn't go away in 40 minutes, take another pill."
I thought this was gone after my surgery. I had thought that the stabilization of my head and neck, the miracle of the surgery, had also removed this condition that has haunted my days for years. But...I guess not. I can see now that the higher dose of pain meds was handling this pain. And I've been weaning myself down on the meds, finally, the other day, reaching the dosage plateau I was on "pre-surgery."
So much on the news these days about abuse of oxycodone... the harm it does for so many who need this medication, the families who begin to wrongly judge their loved ones...thankfully, I do not have to deal with this lack of understanding or this misjudgment. Thanks be to God.
I know this will pass. At least, I believe it will. This is the very pain that was keeping me in bed most of the day "pre-surgery." This is the very pain that convinced me to proceed with a dangerous and risky surgery, just knowing I could not continue life that way. Now, like a long-gone ghost that has suddenly returned, it's back. My hope, where I'm placing my confidence, is that the gain from the surgery will be, at least, that this deeply, profound, all-encompassing, life-stopping pain will pass...will pass more quickly than it did before surgery. I have faith that it will. I have faith that all things will eventually be so much better. Please, oh Lord.
Saturday, March 31, 2012
Recovery going well!
Of course, I have up and down days. And up and down "half days."
Yesterday, I can't describe it....for the first half of the day, I felt totally normal. This is something that I just do NOT feel!! Over the last 8 years, I might have a couple of hours of feeling pretty good, once or twice a year. But to go on for hours with this feeling that I am not a victim, an "injury victim," a patient anymore, well, all I can say is it was a feeling of elation and joy!
I thank God every day for the screws in my C1 and C2! Just those two transarticular screws mean the world to me. I fought tooth and nail for them, and now, in what seems in retrospect a simple endeavor, I have them and my heavy head is now firmly attached to my spine. Praise the Lord!
Already, the swallowing problems are nonexistent! I can't wait to see Dr. Ragel and tell him about this. About how much better I am feeling already and how I absolutely know that it's going to get many, many times better!
Boy, that's a lot of exclamation points.
I do still have pain. I was put onto a lot of painkillers in the hospital and I thank them for that. It showed me that a patient needs to be relaxed and out of pain in order to heal. Not writhing in pain. I did have a lot of pain in the hospital and was asking them for more painkillers every two hours, but they did their best to accomodate me and I do not recall having a terrible time. I liked it there!
So, I've been working to get off of them altogether, if I can. I'm already back down, pretty much, to the dosage I was taking before surgery. I'm proud of that. Now, I'm going to keep after it and see if I can get off, eventually, altogether. We'll see.
I look across the road and now I think, "I want to go walking over there. I think I can do it." We've been having a ton of rain for several days in a row, so I haven't tried. It's been several years since I've been over there (I wrote about this wonderful area to hike in perhaps the first year of this blog. And I also wrote about having to give it up. I'm praying I'll be able to get back into the woods with my dogs. What therapy that will be, what a feeding for my soul. It's been so long since I've been able to be out alone in the woods, and my life up until my injury had been spent alone on the trails and in the mountains and just out on the back of a horse.)
So, that's my update so far. Things going well, and expectations for even more. Thank you, dear reader.
Yesterday, I can't describe it....for the first half of the day, I felt totally normal. This is something that I just do NOT feel!! Over the last 8 years, I might have a couple of hours of feeling pretty good, once or twice a year. But to go on for hours with this feeling that I am not a victim, an "injury victim," a patient anymore, well, all I can say is it was a feeling of elation and joy!
I thank God every day for the screws in my C1 and C2! Just those two transarticular screws mean the world to me. I fought tooth and nail for them, and now, in what seems in retrospect a simple endeavor, I have them and my heavy head is now firmly attached to my spine. Praise the Lord!
Already, the swallowing problems are nonexistent! I can't wait to see Dr. Ragel and tell him about this. About how much better I am feeling already and how I absolutely know that it's going to get many, many times better!
Boy, that's a lot of exclamation points.
I do still have pain. I was put onto a lot of painkillers in the hospital and I thank them for that. It showed me that a patient needs to be relaxed and out of pain in order to heal. Not writhing in pain. I did have a lot of pain in the hospital and was asking them for more painkillers every two hours, but they did their best to accomodate me and I do not recall having a terrible time. I liked it there!
So, I've been working to get off of them altogether, if I can. I'm already back down, pretty much, to the dosage I was taking before surgery. I'm proud of that. Now, I'm going to keep after it and see if I can get off, eventually, altogether. We'll see.
I look across the road and now I think, "I want to go walking over there. I think I can do it." We've been having a ton of rain for several days in a row, so I haven't tried. It's been several years since I've been over there (I wrote about this wonderful area to hike in perhaps the first year of this blog. And I also wrote about having to give it up. I'm praying I'll be able to get back into the woods with my dogs. What therapy that will be, what a feeding for my soul. It's been so long since I've been able to be out alone in the woods, and my life up until my injury had been spent alone on the trails and in the mountains and just out on the back of a horse.)
So, that's my update so far. Things going well, and expectations for even more. Thank you, dear reader.
Saturday, March 17, 2012
A lot has gone on!!
Dear friends and readers,
Alot has happened over the last few months, since I last posted. I apologize for not keeping things up to date here, but at least I promise this: I'm not giving up on my blog! With email and facebook and all the other things in life that pull this way and that with my time and energy, it has crossed my mind to let this blog "go." But today, I made the decision not to do that. I need this blog for future purposes, which I will share later, and also for a place to do a bit of more personal venting (than I care to do on facebook), AND after all, this is the place where I publicly have shared the journey, the ups and downs, high and lows of traveling this road of post-catastrophic injury. How could I let this go?
Well, first of all, I had the surgery!! Yes, finally, on Feb. 17, a month ago, I had my surgery at OHSU in Portland, Oregon. Dr. Brian Ragel, my neurosurgeon, did an awesome job, and I have been doing well. It's hard for me to believe it's been only a month! And due to my brain injury, it's hard to remember a whole lot about the surgery and stay at the hospital, but I DO know that it went very smoothly! The staff did their best to help me with the pain, which was pretty bad, as expected. I was 100% happy with OHSU and Dr. Ragel and all of the staff!! Very good care, including post-operatively. And only a couple of hours away from home, very good indeed!
My husband, Pete, and I drove over to Portland a day early in order for me to undergo pre-operative testing. We stayed in a nice hotel not far from the hospital, called The Avalon Hotel. (If anyone else stays there, ask for the OHSU patient rate. It is only $109 a night, and the rooms are so lovely! Ask for a balcony room facing the river, it'll blow you away!)
Early the next morning, we headed over to the hospital. While waiting for staff to arrive, we visited with a nice couple from Idaho who were there for surgery on the wife. A nice, country/ranch type couple, just what we needed to feel right at home. I asked why they came all the way to Portland and was told it was because of the good reputation of the neurosurgical department of OHSU (Oregon Health and Sciences University). Throughout Pete's wait during my surgery, he visited with several families from out of the area, one even from Sacramento, CA, and when he asked why they had come so far, and received the same answer. I'm sure that gave him a lot of confidence and support.
The surgery was supposed to take 3-4 hours, and I think it might have taken a little longer than that, but not much. Two screws (transarticular) were driven up through the base of my C2 into my C1, carefully and purposely missing my vetebral arteries. I was later told that they also did a graph fusion using cadaver bone. My incision starts a couple of inches into my hairline at the back of my head and then proceeds down my back along the upper C spine, totalling about 8 inches. There are two horizontal incisions, one on each side at the base of the incision, and though I have not had a chance to ask what they are, I suspect they were for the shunts during surgery. I vaguely recall that someone came and removed the shunt(s) when I was back in my room.
On the neurosurgery floor, all rooms are private rooms. Yay! That made it really nice and so did the nice big window in my room. Dr. Ragel and his PA did come to my room a couple of times, very briefly, long enough for me to heap praises upon him. I can't express how happy I am to FINALLY have my broken C1 stabilized!!! Anyone who has been following this blog knows that this post fulfills a very long journey that started back in April, 2004 when I broke my neck, and I've been posting here since 2007, I believe, about so many thing: my trips to New York to unsuccessfully seek treatment for my neck. My trip there to undergo Tethered Cord Surgery in November 2007. My story of being "dumped" as a patient there when I was told that my C1 had "spontaneously healed" and was no longer broken; my subsequent trips to other neurosurgeons and the reactions and rude treatment I received from those doctors. And now, finally, the tale of finding Dr. Ragel; at first questioning if that was the right place and doctor for me, but in the end, realizing that Dr. Ragel is my gift from God, the right man at the right time.
I stayed in the hospital from Friday, the day of the surgery, until the following Wednesday: 5 days. The ride home was painfree and worry-free. Pete has been incredible in his care for me and doing household chores. What a guy! I am so blessed. I do not need to go back for followup until May. I went to my local, primary doctor's office in order to have the staples removed. The incision has healed with ZERO problems, no infection or difficulties with healing. Thank the Lord!
I received so many cards and well wishes online, and so many people praying for me made a huge impact, I know. Thank you so much for those prayers!!
I don't notice ANY change in my range of motion! What a blessing that is. I guess that shows the amount of ROM I'd lost following my injury, but what I take from it is appreciation and joy that I don't have to learn to live with even less! Praise God.
I have lots of restrictions for the first six weeks, which means they will be in effect for another two weeks. I have them pinned up on my bulletin board above my computer and they are very simple: No Bending. No Lifting, pushing or pulling greater than 10 lbs, and No twisting. Limit repetitive overhead work. (Great! No window washing! Works for me!)
I'm trying to abide by these restrictions and have done pretty well so far!
I think I'm being realistic in my "hopes" for this surgery. First of all, the most important goal would be to stabilize the upper Cspine, and with this surgery, I'm sure I can say confidently: "Mission Accomplished!" I am hoping that, as time goes on, I will see improvement in other areas. I hope that one day, I will be able to walk enough of a distance that will be a benefit to my health, but I realise that it's been so long since I've been able to walk that it will take months to get up to speed. I know and readily admit that my muscles are weak and I'm out of condition. But, with time, I hope I'll be able to walk a bit and then more and then more, eventually to where I can walk the dogs when we go camping and perhaps even be able to walk across the road from our house again!
Dr. Ragel told me that they are often surprised by how many other things improve after a surgery such as this. I have faith I'll be one of those examples, but I know it's gonna take time. It took me years to get to this point of weakness; it's going to take some time to get back into any kind of conditioning that will allow me to walk enough distance that makes a difference. I have faith; it will happen!
Thank you again, dear reader.
Alot has happened over the last few months, since I last posted. I apologize for not keeping things up to date here, but at least I promise this: I'm not giving up on my blog! With email and facebook and all the other things in life that pull this way and that with my time and energy, it has crossed my mind to let this blog "go." But today, I made the decision not to do that. I need this blog for future purposes, which I will share later, and also for a place to do a bit of more personal venting (than I care to do on facebook), AND after all, this is the place where I publicly have shared the journey, the ups and downs, high and lows of traveling this road of post-catastrophic injury. How could I let this go?
Well, first of all, I had the surgery!! Yes, finally, on Feb. 17, a month ago, I had my surgery at OHSU in Portland, Oregon. Dr. Brian Ragel, my neurosurgeon, did an awesome job, and I have been doing well. It's hard for me to believe it's been only a month! And due to my brain injury, it's hard to remember a whole lot about the surgery and stay at the hospital, but I DO know that it went very smoothly! The staff did their best to help me with the pain, which was pretty bad, as expected. I was 100% happy with OHSU and Dr. Ragel and all of the staff!! Very good care, including post-operatively. And only a couple of hours away from home, very good indeed!
My husband, Pete, and I drove over to Portland a day early in order for me to undergo pre-operative testing. We stayed in a nice hotel not far from the hospital, called The Avalon Hotel. (If anyone else stays there, ask for the OHSU patient rate. It is only $109 a night, and the rooms are so lovely! Ask for a balcony room facing the river, it'll blow you away!)
Early the next morning, we headed over to the hospital. While waiting for staff to arrive, we visited with a nice couple from Idaho who were there for surgery on the wife. A nice, country/ranch type couple, just what we needed to feel right at home. I asked why they came all the way to Portland and was told it was because of the good reputation of the neurosurgical department of OHSU (Oregon Health and Sciences University). Throughout Pete's wait during my surgery, he visited with several families from out of the area, one even from Sacramento, CA, and when he asked why they had come so far, and received the same answer. I'm sure that gave him a lot of confidence and support.
The surgery was supposed to take 3-4 hours, and I think it might have taken a little longer than that, but not much. Two screws (transarticular) were driven up through the base of my C2 into my C1, carefully and purposely missing my vetebral arteries. I was later told that they also did a graph fusion using cadaver bone. My incision starts a couple of inches into my hairline at the back of my head and then proceeds down my back along the upper C spine, totalling about 8 inches. There are two horizontal incisions, one on each side at the base of the incision, and though I have not had a chance to ask what they are, I suspect they were for the shunts during surgery. I vaguely recall that someone came and removed the shunt(s) when I was back in my room.
On the neurosurgery floor, all rooms are private rooms. Yay! That made it really nice and so did the nice big window in my room. Dr. Ragel and his PA did come to my room a couple of times, very briefly, long enough for me to heap praises upon him. I can't express how happy I am to FINALLY have my broken C1 stabilized!!! Anyone who has been following this blog knows that this post fulfills a very long journey that started back in April, 2004 when I broke my neck, and I've been posting here since 2007, I believe, about so many thing: my trips to New York to unsuccessfully seek treatment for my neck. My trip there to undergo Tethered Cord Surgery in November 2007. My story of being "dumped" as a patient there when I was told that my C1 had "spontaneously healed" and was no longer broken; my subsequent trips to other neurosurgeons and the reactions and rude treatment I received from those doctors. And now, finally, the tale of finding Dr. Ragel; at first questioning if that was the right place and doctor for me, but in the end, realizing that Dr. Ragel is my gift from God, the right man at the right time.
I stayed in the hospital from Friday, the day of the surgery, until the following Wednesday: 5 days. The ride home was painfree and worry-free. Pete has been incredible in his care for me and doing household chores. What a guy! I am so blessed. I do not need to go back for followup until May. I went to my local, primary doctor's office in order to have the staples removed. The incision has healed with ZERO problems, no infection or difficulties with healing. Thank the Lord!
I received so many cards and well wishes online, and so many people praying for me made a huge impact, I know. Thank you so much for those prayers!!
I don't notice ANY change in my range of motion! What a blessing that is. I guess that shows the amount of ROM I'd lost following my injury, but what I take from it is appreciation and joy that I don't have to learn to live with even less! Praise God.
I have lots of restrictions for the first six weeks, which means they will be in effect for another two weeks. I have them pinned up on my bulletin board above my computer and they are very simple: No Bending. No Lifting, pushing or pulling greater than 10 lbs, and No twisting. Limit repetitive overhead work. (Great! No window washing! Works for me!)
I'm trying to abide by these restrictions and have done pretty well so far!
I think I'm being realistic in my "hopes" for this surgery. First of all, the most important goal would be to stabilize the upper Cspine, and with this surgery, I'm sure I can say confidently: "Mission Accomplished!" I am hoping that, as time goes on, I will see improvement in other areas. I hope that one day, I will be able to walk enough of a distance that will be a benefit to my health, but I realise that it's been so long since I've been able to walk that it will take months to get up to speed. I know and readily admit that my muscles are weak and I'm out of condition. But, with time, I hope I'll be able to walk a bit and then more and then more, eventually to where I can walk the dogs when we go camping and perhaps even be able to walk across the road from our house again!
Dr. Ragel told me that they are often surprised by how many other things improve after a surgery such as this. I have faith I'll be one of those examples, but I know it's gonna take time. It took me years to get to this point of weakness; it's going to take some time to get back into any kind of conditioning that will allow me to walk enough distance that makes a difference. I have faith; it will happen!
Thank you again, dear reader.
Wednesday, December 7, 2011
A strange thing, HOPE!
It's taken me a bit to get on here and get my blog up to date on what happened at the neurosurgeon's appointment....so here goes:
The minute I walked into the tall, tall building that houses the medical offices of OHSU (Oregon Health and Sciences University), I felt "right" somehow. It had to be a "God-thing" because I had a couple of tough experiences there a couple of years ago...but nope, everything was going well.
My neurosurgeon was on time, and when I and my husband went in, I was first interviewed by the kind physician's assistant who had interviewed me before, when I first visited that office in 2009. She visits with you, and then goes back to the surgeon and tells him all about what is wanted, expected, etc, so that he can be ready when he walks in. I had told her that I was ready to put it all into the surgeon's hands: if he says yes to a surgery, I will make a decision on the spot to have it done. If he says no, I'll walk out and not seek surgery again.
Therefore, it was not a surprise when he walked into the exam room and got right to the point: yes, you still need surgery and so, first, we'll get new imaging, and once that is done, I will go back to see him and we'll discuss if surgery is still the right thing to do. He wants to just fuse the C1 and C2. I asked him if he'd fuse to the occiput (skull base) and he answered that he prefers not to unless it's very necessary. He said that when he gets into the surgery, at a certain point, he can check it all to see if there is movement where there shouldn't be, and if so, then he'd fuse to the skull base.
My feelings about it are that I prefer he does go ahead and fuse the skull base, but I trust his judgment. I also feel that the fusion of C1 to C2 is certainly warranted since the last MRI where the radiologist reported movement of the C1 to the left, which is not good.
He was soooo nice, and said a few times that I will do really well with this surgery, that he will be helping me a lot, that alot of my symptoms will resolve. I am so happy!
So, right now, I'm waiting for my workers comp insurance to give the go-ahead to have the surgery, and then I can move ahead with the new xray; new MRI (regular) and then the SPEC scan which is an MRI done after a radioactive substance is injected into my veins. He said he was really liking his experiences with the SPEC. I had it last time and no problems.
I'm very excited about this. First of all, as soon as he spoke his words, I got misty-eyed, and tears came from my eyes. I realized as I went home that there was something HUGELY different in my life. Something felt so very changed to how I felt from the time I broke my neck, 7.5 years ago, until the surgeon spoke those words a couple of weeks ago. On the way home, it hit me what it was. HOPE. I have hope, something I have not had for many years. This surgery, believe it or not, will be the FIRST surgery ever that I will have had on the C1/skull base area, since I shattered it all April 9, 2004! The surgeon said it was high time someone helped me out. Lord, please bless this wonderful man!
All of your prayers were felt, believe me. The surgeon was like a new man, completely different from how he was 2 yrs ago. There was a sense of JOY in the exam room, when the center of attention, ME, was infused with happiness and joy that I would finally get stability at the craniocervical junction! The PA was laughing and happy; my husband was cracking jokes, per usual; the surgeon was joyful and tears were streaming down the cheeks of my face as that single emotion, HOPE, which had been missing for so many years, took up residence in my brain.
Thank you for everything and I will keep you posted.
The minute I walked into the tall, tall building that houses the medical offices of OHSU (Oregon Health and Sciences University), I felt "right" somehow. It had to be a "God-thing" because I had a couple of tough experiences there a couple of years ago...but nope, everything was going well.
My neurosurgeon was on time, and when I and my husband went in, I was first interviewed by the kind physician's assistant who had interviewed me before, when I first visited that office in 2009. She visits with you, and then goes back to the surgeon and tells him all about what is wanted, expected, etc, so that he can be ready when he walks in. I had told her that I was ready to put it all into the surgeon's hands: if he says yes to a surgery, I will make a decision on the spot to have it done. If he says no, I'll walk out and not seek surgery again.
Therefore, it was not a surprise when he walked into the exam room and got right to the point: yes, you still need surgery and so, first, we'll get new imaging, and once that is done, I will go back to see him and we'll discuss if surgery is still the right thing to do. He wants to just fuse the C1 and C2. I asked him if he'd fuse to the occiput (skull base) and he answered that he prefers not to unless it's very necessary. He said that when he gets into the surgery, at a certain point, he can check it all to see if there is movement where there shouldn't be, and if so, then he'd fuse to the skull base.
My feelings about it are that I prefer he does go ahead and fuse the skull base, but I trust his judgment. I also feel that the fusion of C1 to C2 is certainly warranted since the last MRI where the radiologist reported movement of the C1 to the left, which is not good.
He was soooo nice, and said a few times that I will do really well with this surgery, that he will be helping me a lot, that alot of my symptoms will resolve. I am so happy!
So, right now, I'm waiting for my workers comp insurance to give the go-ahead to have the surgery, and then I can move ahead with the new xray; new MRI (regular) and then the SPEC scan which is an MRI done after a radioactive substance is injected into my veins. He said he was really liking his experiences with the SPEC. I had it last time and no problems.
I'm very excited about this. First of all, as soon as he spoke his words, I got misty-eyed, and tears came from my eyes. I realized as I went home that there was something HUGELY different in my life. Something felt so very changed to how I felt from the time I broke my neck, 7.5 years ago, until the surgeon spoke those words a couple of weeks ago. On the way home, it hit me what it was. HOPE. I have hope, something I have not had for many years. This surgery, believe it or not, will be the FIRST surgery ever that I will have had on the C1/skull base area, since I shattered it all April 9, 2004! The surgeon said it was high time someone helped me out. Lord, please bless this wonderful man!
All of your prayers were felt, believe me. The surgeon was like a new man, completely different from how he was 2 yrs ago. There was a sense of JOY in the exam room, when the center of attention, ME, was infused with happiness and joy that I would finally get stability at the craniocervical junction! The PA was laughing and happy; my husband was cracking jokes, per usual; the surgeon was joyful and tears were streaming down the cheeks of my face as that single emotion, HOPE, which had been missing for so many years, took up residence in my brain.
Thank you for everything and I will keep you posted.
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