Monday, March 31, 2008

New message board! For Jefferson Fracture folks, too!

Hi, friends....I have finally finished putting together a new message board which I hope will fill a niche online. First, there is nothing out there for Jefferson Fracture-C1 fracture folks and I wanted to combine these people in with those who have Arnold Chiari Malformation (I have an acquired chiari but not ACM) and other skull base abnormalities since the symptoms are so alike in many cases.

The board is coming from a Christian perspective for those who suffer with neurological problems, primarily in the upper spine/skull base/brain areas.

Here is the link and everyone is invited:

I love the picture of the two young gals at the top of the page of the new board, but want the guys to know that they are definitely invited, too!!

blessings and hugs

Anatomy of a brainstem symptom

I just ate supper, slowly, while drinking lots of fluids in between bites. Felt okay, but stood up and felt that familiar sensation of food traveling veery slllowwwly down my throat. This causes me to feel nauseous and the lower part of my back to hurt. It's hard to get a breath and I feel hot and flushed. I sat down in front of the computer where my personal-sized fan is and now have it turned onto me, but the food still feels like it is down in the center of my chest, moving slowly or not at all. My ribs sort of hurt and I feel woozy and a bit light-headed.

I get up and take several spoonfuls of applesauce. I eat 50 oz of applesauce a week because of swallowing problems. I still feel the pressure, the back of my head hurts, the palms of my hands have that "neuro" ache in them. I take in some deep breaths and walk around a little, but still that feeling of pressure. I'm not choking, the food is further down than that.

Earlier I took a nap and when I first laid down, I had breathing problems then too. I did some work today that was very low-impact, in fact, one might think NO impact, but I imagine the position of my head caused the odontoid (part of the C2) to press into the front of my brainstem and thus, this sort of event happens.

Now, something new, my left hand is tingly and painful and it is streaking up my arm. I wonder if this has something to do with my heart. Because heart stuff is also a sign of brainstem compression. I don't feel the pressure of the food anymore down low in the esophagus, but feel some food now up higher, near the back of my throat. I'm guessing that the backed up food passed on down and what I'm feeling now is the food that was behind it (sorry if this is grossing anyone out).

Now I feel a pinprick in the right frontal area of my brain, not bad, just "there." Though the left hand went normal for a minute, it again feels strange and another pinprick in the right frontal lobe. I'm going to get up up and put some loose clothes on. Walk around a bit.

I put my dishes into the dishwasher and now, 45 minutes after my last bite of food, I still feel some presence of food going down the gullet.

60 minutes after my last bite of supper, I feel "all clear." Good thing the dessert cart didn't come around, huh?

[note: I just wrote this out as it happened for my own records and for anyone who might be interested. Brainstem compression controls autonomic systems like swallowing and breathing and heart function. I'm not sure, but it "feels" to me like it affects the muscles that control the swallowing/moving food toward the stomach, as well as the muscles that move the diaphragm.

I also wanted to mention this for family and caregivers. I have a wonderful husband who really listens to what is going on with me and will question me when he sees something not looking right (like just now). But what I wanted to mention is that sometimes, a sufferer might mention they are going through something like this NOT to whine or complain, NOT expecting you, the friend or family, to fix it or do anything about it, but to just let you know in case the whole event keeps
progressing, you pass out and end up in an ambulance headed to the ER. In the midst of something like this, it's impossible to know if it will end soon or if it will progress. If the sufferer didn't mention it to someone, and did pass out, it would be helpful (we presume) for someone to know what was happening leading up to faint.]

Sunday, March 30, 2008

What a Sunday!

On a day with azure skies, puffy white clouds and the ever-present "Gorge" winds, we decided to take the stereotypical Sunday Drive. I walked down and opened the gate as my husband drove through, then locked it back up to keep the neighbor's dogs from invading our place and knocking over trash cans.

We headed west, me in my rigid cervical collar and the views incredible from any inhibited angle. Down through the canyon we wended our way, our sports car holding the road so solidly that I could notice the difference (in my neck) between it and our little truck. The canyon is way off the beaten path and is very deep, with a roaring river tumbling down through the valley floor and pine and fir trees climbing the steep hillsides that all define the landscape.

We followed the river to where it poured into the Columbia and kite surfers braved the cold to obtain their adrenaline rush, and then we headed west again. Stopping at an obscure-looking antiques and "oddities" store, we browsed through the musty-smelling items teeming with history. This was quite a surprise in that the shop, located on the main street of a very small town sawmill town, was filled with very nice antiques and some that were obviously ancient, Asian pieces. Downstairs in the basement, more armoires and cabinets and tables and chairs were warehoused. Prices were a little more than we'd want to spend, but truthfully in line with the value of what they had for sale.

La Tienda! We noticed only one restaurant open in town, a Mexican place that looked almost shabby from the outside. Noticing many cars parked along the street, we took that as a good sign and we were right. The place, filled with happy people, served delicious food, the service was impeccable, the restaurant was clean and nicely decorated, AND they had O'Doul's Amber! I can't remember the last time I had one of these non-alcoholic beers, but it was SO good!

Back in the car with "to go" boxes filled with enough food for supper, we headed east, toward home. We could have taken several routes but I wanted to go a circuitous, back road that we had not been on in a few weeks. We passed a lovely waterfall and continued on through the woods and past old farmhouses.

"Blessed are the paths before me, O Lord." (I just made that up). To think of all the places we could have gone, the different roads we might have taken. The moments we paused or hurried, all putting us at one spot at just the right moment in time.

For we were about to be given a GIFT from the heavens that defies description! I mean, we always receive these gifts. Rainbows and far-off snow showers and the five deer who live in my back yard, these and many, more are constant gifts that fall into that path before us, ladening us with blessings. But once in a lifetime, something big and special happens.

We are looking straight ahead as we drive (a position I am forced into) when we both see a head popping out from the right side of the road. Tawny and dark, it makes sense at first in our reflexive thinking to assume this is a deer.

The head continued without faltering across the road, attached to a huge body. Lenthening out in a run, punctuated by a very long tail, the mountain lion crossed our vision in a straight line for about 50 feet before he or she disappeared into the underbrush on the left side of the road. A mountain lion! What a breathtaking gift! These are such shy creatures. For two ranch folks like us, who have spent a lifetime in the wild and wide open, we know how rare it is to spy one of these big cats.

And it was a big one, too. Darker than the ones I'd seen before, and the paws and tip of the tail and the front of his face were black. His paws were furry, big and clunky looking. I've seen one cougar before (two separate occasions) and this one was definitely bigger. And with that dark fur and black points, the prettiest.

My husband and I just gasped, each in awed appreciation of what we had just fully seen. No glimpse this time. This was the most full and clear view of a big cat I'd ever seen. It felt and still feels like a great big GIFT.

I remember seeing my first lion in about 1996. I was leading a line of dude riders down the trail on our ranch, next to the creek, with our Border Collie, Ty, brush-popping ahead of us. I heard a splash in the creek water, a bark from the dog, and looking to my left, about 30 feet away, I saw the hind legs, haunches and then the long tail of a lion disappearing into the brush. I was just as in awe that time as today. For I had ridden alone in the wild mountains for 30 years at that point, always scouring any cliffs for a glimpse of a mountain lion and yet never seeing one.

About a month later, I was leading another group of riders up a dirt road near the ranch. One of the riders exclaimed about a lovely doe on the sage-covered hillside who had jumped up from where she had been resting and was bounding away, scared by our presence.

I looked and just then, saw the lion leaping up and running after her. It looked like she had been resting and he had been stalking up to her when we rode past and spoiled his dinner plans.

Now, I've seen three lions in the wild, and all have been in the state of Washington. I truly love this state, it is so large, with impressively high "hills," majestic, snow-covered mountains, big rivers and miles of uncharted territory.

Having seen that lion today, we are even more on the lookout for a Sasquatch. After all, not far from here, it is noted to be the area that ranks the highest in Bigfoot sightings. I heard one once...but will save that tale for another time.

Saturday, March 29, 2008

EMT on a ranch, part two

Cold and weary, I trudged up the hill to the birthing place where we'd first found the old cow. Coyotes, buzzards and crows had thankfully not gotten to the placenta yet, so I bent over to scoop it all up and slide it into the bucket. As I stood erect and straightened my aching back, I noticed something across the creek.

A big, gray calf lay dead in the snow over there with the mother cow hovering close by, licking its hair and trying to bring life back into it. I could not believe what I was seeing.

Another dead calf? No! This can't be! This is too much. I won't stand for it.

Leaving the bucket with the bloody, slimy (yet precious) cargo where it stood, I strode purposely toward the calf, again jumping over the small creek. Snow started to spit and the wind came up a bit. What a day to be born, I thought.

I knelt next to the big calf, looking him over. He was dead alright. No breath coming out of his nostrils, no life in his eyes. I tickled his nose with a dried weed stalk but no startled sucking in of breath. Nothing.

For some reason, this was simply unacceptable to me. I took off my coat and placed it over the torso of the calf, and I began rubbing hard on the side of his chest, behind his right front leg.

My mind racing with thoughts of what could be done, I leaned in closer, covered one of his nostrils, still wet from his mother's licking tongue, held his mouth shut and then covered the remaining nostril with my mouth. I blew in hard and then paused. I blew in again. And repeated about five times. Then, I returned to the area where his non-beathing heart was and started rubbing and compressing again.

When I went back to blow more breaths into his lifeless lungs, I noticed that every time I blew in, his staring eyeball would roll back into his head, and when my breath came back out of him, the eyeball rolled back to its neutral position. Over and over, the sightless eyeball would roll back as I urged breaths into one of his nostrils, then it would roll back. Seeing nothing, aware of nothing. Dead. But the rolling of the eye was what kept me going.

The mother cow was sure I was the one who had killed her baby and she was blowing snot in my back pockets, as they say. I kept shooshing her away....while giving mouth-to-mouth resuscitation, then alternating with chest pumps....while knowing Pete was down in the barn wondering where I was with the afterbirth.

As subtle as a the whisper of a snowflake, as gentle as a prayer, I saw the calf take a very shallow breath on his own! I kept rubbing his heart area, scaring off the protective cow and with every one of my prayers, his breath became stronger and stronger. He blinked an eyelid while still not moving a muscle of his body or head.

Right then, I heard the motor of the old, flatbed truck. Pete had seen me up on the hill, bent over a calf, and had driven up to help. He got out and came around to where the calf lay with my winter jacket over him, scooped him up in his arms, and placed him quickly into the cab, safely away from the old cow who was becoming madder with each passing second. I jumped in with the calf and we drove back down to our house, the cow hot on our heels.

We carried him into the kitchen, laid him out on the floor and placed an electric blanket over him. He still was lying flat out and not moving any muscles at all.

I needed to go up to the ranch owner's house to pick up our paycheck and ended up visiting there for about an hour. When I got back, the big-boned, gray calf was still lying down, but he was up with his front legs curled under him, his eyes bright and looking around. I have a picture of him and when I find it, I'll add it here.

We briskly rubbed him down with one of our bath towels and then carted him back out to a stall in the calving barn where his mother had been awaiting his return. She accepted him lovingly. In the meantime, Pete had rubbed the afterbirth on the other calf, and after a few days, that mother cow came to accept that calf as well.

A final postscript to this story. We worked so hard, as all ranchers do, during calving season. This story shows how much work and dedication it takes to get these calves on the ground, healthy and ready for life. We didn't own the ranch. We didn't make a dime on that calf. We wouldn't have lost a nickel if the calf had died that morning. But, sometimes, there are right things to do.

In the Fall, after the cows had all been gathered off of the Wilderness and their calves were weaned off of them, I helped load the calves onto the semi-truck as they headed to the feedlot. When that big, chunky, healthy, gray steer trotted up that ramp into the truck, I recognized him easily. His back was broad and his loins were muscled. He carried the air of victorious survival, or maybe that was just the way I saw it. I wiped away a few stinging tears, turning away so the other cowboys would not see my weakness.

The boss never knew what we had done six months before on a freezing, foggy morning to save his calf's life. He never knew that calf from any other on that day we shipped them.

But we knew. And felt the reward of doing the right thing.

EMT on the ranch, part one

"Not another dead calf," I cried out to Pete as we watched the scene before us of a mother cow licking a lifeless form draped upon the ice. My breath rose up in billows in the frosty, morning air while Pete just shook his head in frustration. It almost seemed too much. There had been so many that winter.

Our first season of calving on that ranch 14 years ago had been one of bitter disappointment and disbelief. We'd always prided ourselves on a high "live calf" percentage but this place we'd just hired onto seemed doomed to failure. Pete had set up many calving checks throughout the day and night. We'd all make regular walks through the herd during the day, and then at night, Candy and Judy, the hired couple who lived in a small camp down the road, would come check at 8 pm.

I would put on my heavy coveralls, knit stocking-cap and mittens and, with flashlight in hand, do the 10 pm check. That would usually put me back into the house around midnight if nothing was awry. Then, Pete would check again in the wee hours of the morning, come back, and by that time, we'd be ready to feed hay and be able to do a really good check again. 'Round and 'round, the cycle of calving, as it is done wherever cows are giving birth on ranches and farms.

But here, we'd experienced oddities and abnormalities we'd never seen before. Aborted, full-term calves; ones which were born too mentally-handicapped to nurse, even from a bottle; one born with no eyes; another found dead but obviously misshapened.

Finally, we'd taken one corpse to the vet's for a necropsy to see if anything could be found. After costly lab tests and interviews with past ranch managers, we learned that the "calving pasture" had been the site of a bad salmonella outbreak in the cow herd about five years earlier. How difficult to imagine that viruses and bacteria can stay in the ground for years and impact a calf crop at such a later date!

But on this bitterly-cold morning, these were all facts we had not yet learned and we were in the throes of dealing with the most arduous and challenging calving season of our careers.

The Hereford cow, devoted mother that she was, mooned over the dead calf in front of her. There was nothing we could really do for her. Pete headed north to walk up on the ledge to check the cows and heifers up there while I crossed the creek to search for any more births that could be found. As I leaped across the small stream, my ankles hurt where the chilblains on my heels scraped against the cold rubber of irrigation boots.

Over by the creep feeder where calves could nose their way into a trough filled with grain safely inaccessible to their mamas, a little, newborn, Hereford bull-calf bawled for an absent mother. I looked around and could not see evidence of any cow nearby who looked to have calved the night before. No cow moaning for a lost calf; none nosing other cows' calves to check for her own; nothing lying down or trailing afterbirth from beneath her tail.

What a mystery! Here was a new baby calf, but no mother! How could that be?

Then, it hit me. The cow who was mooning over the dead calf had delivered twins and had accepted the dead one but rejected the live one. I called to Pete to come help me.

She was easy to get into the calving barn as Pete drug the dead calf by the heels. The old gal followed close behind with her nose to the ground, desperate to be with her baby who would never
stand up and nurse nor see the light of day. I pushed along the rejected calf and when we got to the calving barn, Pete put the cow into the milking stanchion and we tried to push the live calf onto her teat, to be sure the little bull got the all-important colostrum, or "first milk" from his mother.

She would have none of it. Wrenching her head side to side, knocking the metal of the chute with her horns, she kicked the calf viciously. We were eventually able to get the thick, yellow, rich milk into the calf, and then turned both cow and calf into a stall filled with fresh straw. As far as the cow was concerned, the wobbly red calf was an alien from outer space and the furthest she could get from it, the better.

Grabbing a white plastic bucket, I opened the door in the back of the barn, heading up the hill to the calving grounds at the request of my ranch manager husband, who had instructed me to "go get the afterbirth." I knew what he wanted and why. We'd worked together daily on ranches for all of our married years and teamwork had become instinctual. We needed to rub the afterbirth all over the living calf in order to transfer the scent from the cow and dead calf and thus help the cow to accept this little boy.

Some ranch folks will skin out the dead calf and tie the hide over the back of the "grafted-on" calf for several days in order to fool the cow, and we would do that, as well, but first, we'd try the easier task of simply rubbing the placenta with hopes that would work as well as it usually did.


Thursday, March 27, 2008

This, that and the other thing...

"Thou, oh Lord, art the lifter of my head."

I read that in a book today and the words leapt from the page. Yet, my feelings about it are ambivalent. I know, without a shadow of doubt, that the Lord has indeed preserved me and is keeping me going. But, sad to say, my head is not very stable or feeling very supported.

I started this new post last night, but went to bed before finishing. Yesterday evening, I had such bad pain, especially to the touch, behind my right ear. I went to bed at 11:30 and woke up just now at 2:30 in extreme pain in my hips and lower back. I stumbled, with hurting feet, to the bathroom, then tried to return to my bed, but everything hurt so badly, I got up immediately. Besides, I wanted to change my underthings, another side effect of a badly irritated lower spinal cord.

I took a Norco, and here I sit. My brain is having a hard time, my eyes are hurting so badly, I'm having to correct everything here. And I write this in the midst of this pain, not for sympathy (it will pass) but for others in like situations.

I went without caffeine all day yesterday thinking that would fix everything with the "below the waist "and leg symptoms at night, but certainly that didn't help....

Now, 'tis morning, a gray, cloud-laden sky, light snow falling. Very dark in the house.

I received a long form from the national gathering I have regularly attended for the last 20 years. A form sent out to everyone who has been invited over the years, a potential harvest of information for the folklorists and archivists on the 25th anniversary of the event.

I looked it over, but will have to respond that I am just not well enough to fill it out. I want to reply with one sentence: "If I were a horse, they'd shoot me."

And from a livestock raiser's perspective, this is true. I certainly would not be of any use and surely some well-intentioned vet would be telling my owner that it was time to put me "out of my misery." Pretty funny, in a sardonic sort of way.

I've been studying a bit more about Tethered Cord surgery after reading my OR report. Wanting to learn about arachnoid lesions, which are what caused my surgery to last so long. And this research is leading me to list several more questions for my surgeon when I see him in May.

Was thinking a bit ago that the difference in chronic pain and "non-chronic" is that with the latter, you are worried and you go the ER expecting help for your pain. With the former, you live with it and only in extreme cases go to the ER, because you know they, nor anyone else, can help.

Well, now on with my day. I always find lots to keep me occupied.

Tuesday, March 25, 2008

Patches, the Coolest Horse

Well, gentle readers, here's a fun and feel-good video to watch!
The kids will love this one, too.

Don't show it to your horses, however, as you might have to make
some renovations to your house and car!

Sunday, March 23, 2008

Shadows in the Pond

Our past employers purchased my good horse, Shadow, when we moved from the ranch. As most of you know, I'd been told to never ride again, so it was with mixed feelings I left Shadow behind. I didn't even go out to the barn to "say goodbye" to him. Why put myself through that? He really wouldn't know the difference. We'd had 12 good years together.

His new owner loves him so much and sends me pictures every once in awhile of her riding him. She's so proud and happy with him. And those pictures always made me cry.

However, a couple of days ago, she sent me a DVD that her aunt had made of her riding Shadow in the arena and also through the pond on the ranch. My old friend Shadow stopped to paw the water and splash and play, his rider revelling in his joy of life.

And miraculously, I did not even feel a hint of tears as I watched. I truly felt happy that he is so well-loved and appreciated. He is 17 years old and has a good home where he's already lived for seven years. I could not ask for more.

And I myself am really learning to accept my new normal and that feels good. It's all about adjustments and blessings and dusting myself off and getting back on the road of life.

Last night, I watched an episode of "The Soup," a comedic show on TV which makes fun of the stupidity of much of what is on television. I never watch it, but last night, I guess my mood was right.

I went to bed and was talking, as always, with my husband about the show and also about our neighbors across the road and I got to laughing so hard, I couldn't talk. (Our neighbors live amidst a lot of trash and I was venting in a humorous way about our frustrations with having to look at their yard). I had not laughed that hard in a very long time. And when I was done, I felt
the familiar electrical impulses and pain from nerve compression. Laughing is a "valsalva" manuever, as is crying, coughing, sneezing. It's a literal strain.

Good Friday was two days ago and four years ago on Good Friday, my life changed forever when the horse I was riding threw on the brakes and stopped in front of a jump. It WAS a good Friday. I lived, I'm walking and talking and with my family and able to carry on and live and sometimes, in spite of the payback, laugh really, really hard.

And yesterday morning, my 82 year old neighbor to the north of us called to visit. Esther is a lifelong (now retired) ranch woman who ranched for many years in Elko County, Nevada. We have friends in common and also livestock. We talked for 90 minutes about mustangs and cowdogs and cows and ranch kids. We both need it like a cool draught from the trough at the foot of a windmill.

Some of this and some of that.

Well, I did get my new Marlin brace on Thursday, but it wasn't worth the wait or traveling. It's thrown into my closet (the orthotist said it was non-returnable). I must have different stability issues than my online friend who recommended it. This new brace hits me on the back of the head where it really has zero stability side to side....and it digs into the top of my chest. Oh well...I'll stick with my old Aspen.

There just hasn't been much to report, really. I have been making travel arrangements for us to go to our son's wedding in September. He's getting married 1000 miles away, nearer to where he lives, but no matter how bad traveling makes me feel, I am THERE!

I am toying with the idea of starting a Christian online support group for those with Chiari, syringomyelia, basilar invagination, arachnoiditus, Ehlers Danlos Syndrome, and/or traumatic issues like I have. Because of this broad base, I have no idea what to call the group. I have already heard from people who are very interested in the idea of a place where we can be open in sharing how the Lord helps us get through these things.

I went for a walk today during a pause in the rain. The scent from the damp forest was heady and evoked many memories for me. There was also a tinge of smoke from someone's wood stove. The snow-melt creek has gone down about a foot because we've had some cold nights, thus it no longer roars down through the canyon bottom. It is much more polite, burbling its way to join the river, and this change is calming. I came home from my short walk and could feel the uproar in neurological stuff caused by the exercise. I suppose I'll again be paying nature's fiddler tonight. But it is indeed worth the price.

Really, nothing is happening here now. No doctor appointments except the follow up in New York in May.

Oh, I did want to share something the orthotist said. I found it to be enlightening. She only speaks when spoken to, and then very little, but I did glean this information from her.

I told her that I need something to steady my head and neck because of skull-base nerve compression. She said that most people come in there for a neck brace because they have recently been injured. Their necks hurt when they move so they instinctively keep things as still as possible. The braces really serve best as a reminder to keep things quiet.

In my case, I don't have a lot of pain when moving my head or neck. I get wicked neurological symptoms from the action of it and it will be pain (later on) and it also causes problems with breathing, swallowing, paresthesias, weakness, nausea, dizziness etc. All from nerve compression.

The orthotist said no brace, not even a CTO, will keep things so still that there will be no nerve compression. Only a halo will do that.

After my years of dealing with this, I see the sense of what she is saying. Yes, the braces help and they help a lot. But they cannot negate or prevent ALL nerve compression. That puts things into perspective for me and helps me to know that I probably can't find a brace that will do what I'm hoping or that would make up for the lack of a craniocervical fusion.

So, we live and learn.

thanks for reading!

Monday, March 17, 2008

No new brace today...

I intended to go get my new brace today, but went to the first town, 35 miles away, with 17 miles left to go to where the orthotist is, and I just couldn't make it. I'll have to try another day.

I've sure been having some red flag symptoms and that just "gggrrr's" me! While sitting in the recliner, I often will fall into a painful sleep. Exactly the sort I had from my CTO months ago. I think it's the position of my head. And I'm thinking it's painful b/c I wake up not breathing. So, my brain hurts due to lack of O2.

My breath is all used up, all the way out, so when it wakes me up, it's a bit painful to get my breathing started again. I've had this before over the last couple of years, but much more so now. And swallowing. Pills sometimes just don't go down, only applesauce gets the muscles to move which will take the pill down, or food goes down, but takes a very long time to work its way down to my stomach.

I hate all of this so much. I do NOT want to go have the fusion, I don't want to have a halo for a year (I've heard now that my doctor is having people with osteo who are getting the fusions wear their haloes a year), and I don't want to risk a failed fusion. BUT, if things are going to progress ( swallowing and breathing difficulties are red-flag symptoms for brainstem compression), I know I may end up doing it anyway.

Asking for prayers.

Sunday, March 16, 2008


Every day, perhaps more than once a day, I get wistful thoughts that sort of breeze into that thinking space between my ears. I must have left the door ajar after I finished sweeping and that lonely wind just blows western wishes into my mind...wishing I could do things again, like going for long trips to places we would love to visit. Going to NH to visit my Mom and help her out. Going back to riding lessons...going hiking. Playing music and jamming again. Performing onstage again. Every day, those wishes kind of follow me around, hiding behind bushes and chairs until I'm not paying attention and then popping into my thoughts uninvited and unintended.

I know how to shut them down immediately, and I do. I answer those wishes firmly with thoughts of someone wheelchair-bound, blind or bedridden who can't do the things that I can do and then, this lightning-quick debate, having become habit and instinct, lasts only seconds.

Yet, every now and then, while I read a trade-sized paperback book, I give in and allow my now-clean-and-soft fingers to rub across the slick covers, evoking a sort of squeaking noise that vibrates and sounds like oak-tanned leather as though I'm leaning forward, arms rested across the saddle horn, and scanning the mountainsides for signs of bear or cougar, or catching a glimpse around the edge of a rocky cliff at places I can't go. Where only my eyes can travel.

Thursday, March 13, 2008

silly musings on cervical braces

So, last night, I got to thinking of the other, real-life, euphemistic names for rigid braces and collars.

Aspen (Ah, swooshing down the mountains on four inches of powder, cutting Z's through fresh snow! Look out for that tree! Ohhhh, that's what that collar is for!)

Philadelphia (Freedom? Sorry, Elton, but cinched up tight in a CTO vest or collar, freedom is not the first word that comes to mind!)

Minerva ( A Roman goddess of warriors, poetry, medicine, wisdom, commerce, crafts and the inventor of music. Did I mention she was a virgin goddess? One look at the Minerva brace above and we know why!)
Halo (Ah, heavenly, floating around on a fluffy cloud, playing a harp, ignoring the pain and infection from the four pins
biting through your scalp and into your skull)
SOMI Brace (Sternal Occipital Mandibular Immobilizer) (Say THAT three times fast while your jaw is shoved up in the air!
One note about rigid cervical braces: when you talk, only the top half of your jaw can move...the bottom half cannot move downward due to the bracing of the collar. Reminds me of when I was a kid, lying upside on the bed, making my sister roll with laughter as I talked with pencilled-in eyes and nose on my chin!
And I've already discussed MARLIN and MALIBU.
I guess these nice-sounding names are better than titling them with names that describe how they feel. If they did that, rigid cervical braces would be named The Beartrap, The Dickie from Hell, The Chastity Vest, The Jaw Crusher...
All with a 100% Guarantee to bring stares from the general public, cause small children to cry and create heat rashes and localized itching!
All kidding aside, when I put on my revamped Aspen, security sets in and at least for a while,
it's comfortable and stabilizing.

Wednesday, March 12, 2008

Booster shots and weird vision stuff

Today, I felt pretty darn good. There's so much more to feeling good than feeling good. Did I confuse you yet? What I mean is, when I feel good, it means more than just "in the moment." It means I "can" still feel good. It means I can still have some days when my legs are not weak and painful. It means I "can" have some energy to do a little bit. Just a little, but at least a little.

I've felt so guilty for not calling my mother (which I had not done because I feel rotten). So, I did that and feel good getting that checked off my list. I have not called our son since he emailed me that he's getting married. NOW, you know how crappy I've felt! I tried calling him today, but had to leave a message.

I needed to take Quincy to town, one mile away, to get his yearly vaccinations. I felt good enough, so I suggested to my husband that I drive myself and dog the one mile into town. He said great. So, I did.

Folks, I hadn't driven in a year and I did great. I hate to admit it, but I drove down there without my collar because I knew at the end of the drive, I had to look left for traffic. And I wouldn't be able to do it with the collar on. Okay, I'm paying for it tonight, big time. Percocet AND Norco. Deep stabs of pain occipitally. I won't drive much anymore, but it felt good to have tried. And to have done well. Another one of my main problems with driving is the looking left and right at stop signs, etc. This makes me quite dizzy.

Lastly, I have this symptom that is concerning me. I've lived with it almost four years so it's not something I'm really worried about, except that it has added something to the mix that did catch my attention.

Since my injury, I've had this "bump, bump" in the center of my chest. Back about 3 and a half years ago, I went thru all the cardio tests and I was found to be mostly fine. I knew that. I have a good heart!

But, the bump, bump continues, usually about twice a day. It's a hard bump. Not a flutter or racing. The best way to describe it (sorry) is "bump, bump" with sometimes a third bump.

I've figured it must be my diaphragm. Dr. B told me that I have brainstem compression, and I know my OR report says that my brainstem was (or, is?) elongated 53.3 mm. And I know the medulla oblongata (brainstem) controls all autonomic systems, including breathing and the diaphragm.

However, sitting at the computer today, I felt the mid-chest bump, bump, and then noticed a narrowing of my vision, while my vision turned blurry and dark. This only lasted a few seconds, but was attention-getting, to say the least! I had the feeling that I might have passed out if whatever was going on lasted any longer.

I've posted on my online support group this question, maybe I will get some feedback.

Oh, good news is I've scheduled my follow-up appointment with Dr. B at TCI in NY for May 2. So, I will be able to ask him these questions. My sister again plans to join me there (she lives in NH) and that will be such a help!

Tomorrow, I'm calling my son!

Goodnight, my gentle readers.

The difference between Malibu and marlin

I know I haven't written in quite a few days. First off, I've felt horrid! Very, very weak, painful in the legs, pain at the back of the head, blah, blah, blah!

Monday, I happily jaunted my little self (well, my husband drove) 55 miles to the orthotist where I had an appointment to get my new Marlin collar. You may remember that this same orthotist gave me a previous appointment, I drove the 110 miles round trip only to be told the collar had not shown up yet.

So, last Monday, I go into the office like a kid at Christmas-time. My rigid, neck brace has really become a part of me. I don't think so much anymore of people looking at me. And I feel pretty comfortable in it. Ask me again during the hot summer, I'm sure I'll have a different outlook. But right now, I'm looking forward to a new one.

Um..."I'm here for my new collar."

"Oh, yes! I'll be right with you!"

Two patients were there before me, so that was fine. Then a couple came in to talk about their mother's brace which kept falling off of her "conical" leg (No, not comical leg!). Mother is in a rest home and needs orthotist guy to go look at it. That took 15 minutes to figure out. Them, not me.

Orthotist guy goes into back room and comes out all happy with my new collar. I know from looking at it, it's not the right one. I look at the label on the bag: it's a Malibu. Sounds sexy, huh? But it's not a Marlin, which is the one I want. I want the one whose name reminds me of scenes of vacationers and sportsmen down in the Baja of California sport-fishing, drinking beer and shouting up a storm when one gets on the line. Yeah, give me a good ol' Marlin! I've been to Malibu, it's not all it's cracked up to be.

Orthotist guy deduces, "Oh, I must have ordered the wrong kind!" (DUH, ya think?)

Orthotist guy's wife enters stage right (turns out she's the real orthotist and he's just an orthotist guy by marriage): "What's going on here?"

He explains to her what happened. "I'll have to order another one."

Me? I'm standing there waiting for an apology. With none forthcoming, I try the guilt approach:
"I live 55 miles away and I drove all the way last time for nothing and now this? I'm really counting on this collar to give me the occipital support I need so badly!"

Nothing. No apology, not one tittle of an apology. I leave with "We'll call you when it comes in" echoing off the walls of the old Craftsman-style house which serves as their office.

Oh, I almost forgot. I had left my Aspen CTO there for orthotist-mate to put the nice foam padding in the back of the head area, like he did on my Aspen collar. So, I ask for it. He brings it to me and I can tell nothing has been done. It's been two weeks. I said, "Did you fix that up?"

Orthotist-mate says, "No, I wanted to wait until you told me that what I did to your collar was the right thing."

I said, "I called you and TOLD you it was great! I really raved to you over the phone about it!"

Wait...was that an apology I hear in the wind? Nope.

Gas is $3.50 a gallon here. I will have gone 330 miles to get this collar, that is, IF he orders the correct collar this time. You know, the one that evokes visions of deep blue seas, cans of beer (am I making a point here!), handsome fishing guides, fast boats! YOU know, a MARLIN!

Friday, March 7, 2008

I Came Away Alive

Tonight, I was happened upon a segment of a program on the National Geographic Channel ("I Came Away Alive") about a boy who suffered "internal decapitation."

From the looks of it, there is no question that his injury was much worse than mine. I would venture a guess that there are different levels of atlanto-occipital dislocation, or "internal decapitation." From the OR report from my surgery last November, the surgeon describes dislocation at the occipital condyles, or back of the Cspine/skull. I am wondering if there was still an attachment at the front (or if there ever is). Oh, there are always so many questions. I'll never know everything about what happened to me, even though my mind is hungry to know. More questions will always arise even after one may be answered.

Deep breath. So, what did I feel as I watched this program which really did a good job with graphics to show exactly what happened to this brave boy? Just a strong sense of awe. For, although his injury was more intense, this boy also was viewed immediately by people on the street; the EMTs were on the scene in 2 minutes. And a surgery (occipito cervical fusion) was performed almost right away.

In my case, I was alone with the horse. As I came to, I felt the electricity pulsing through my arms and legs. And I eventually stood up, finding myself unable to hold up my head whatsoever. I bent over at the waist to let my head hang down, and caught the horse and walked home.

After four days in the hospital, I was sent home with no home-nursing visits. No calls from the doctor. I had to hold the weight of my head with the palm of my hand in order to rise from bed or a chair. And I remember putting a hand on each side of my head and manually turning my neck and head when I wanted to turn over in bed. The doctors KNEW I had the 4 place C1 fracture, but they did not know I had the atlanto occipital dislocation. The facts still amaze me.

Sent home without a nurse, none. Left to my own devices. No doctor or nurse to call and check on me. Manually turning my head or lifting it in order to manuever my way through my days.

Why didn't I sever my spinal cord? Why didn't I render myself paralyzed or dead? Was it because I prayed so fervently from a deep place in my heart, as I fought to survive, "please, Lord, don't let me be paralyzed?"

Maybe you don't need doctors and surgeons and at-home nursing visits when you have Almighty God by your side? In fact, I am testament, I guess, that you don't!

But words escape me now, to convey to you, the reader, how it felt to sit in our dark living room and watch this program, knowing I had suffered much the same injury. Listening to the reporter tell of how most victims with this injury die. Words escape me. My heart beats a little bit faster and my breath comes more difficult. I don't need words. I exist in awe.

Thursday, March 6, 2008

Big, happy news!

Here is another photo from yesterday. All of my life, I have been someone who pushed past pain, fatigue, cold or hot. My walks reflect this characteristic as well, but only to a limited extent. My walks last 20 minutes. Ten minutes are usually pretty good with just tender feet and slight weakness and shaky balance. The next five minutes are more painful, more weak. And the last five minutes are almost excrutiating. Weakness that hurts way, down deep and feet that are throbbing. So, why do I go at all? It's not because I know I must try to keep mobile. And it's not because it's my form of physical therapy. It's because the woods, trails and streams have always sent a Siren's call to my awaiting ears and caused me to push past good sense and pain.
Back then, those calls lured me above timberline and out a-horseback for ten to twelve hours. Today, it's a 20 minute stroll. But the rewards are very similar and still worth the effort.
My big news: we learned from our 27 year old son today that he is getting married in September! He is our only son so this is new territory for us and we are ecstatic for him and his chosen. We will definitely "be there!" He sounds so happy and it makes our hearts sing.
One last note today. I wrote that a friend had called me and, like the Siren tune the forest sings, persuaded me to feel positive about going to the national gathering that is so important to both of us. But now, I am back down to earth and common-sense reigns supreme (weakness and pain have a way of ruling the day) and I know I can't go. Too many people, too much stimulation, not enough strength. As much as I miss my old friends and as much as I want to be a part of the event, I know that in my current shape, I can't do it. We pick our battles. We choose our trails carefully. Such is life. Now, when I carefully step along deer paths, I know I can't take the steep trail up to the awe-inspiring cliffs like I once did. I must stick to the lowlands and easy trails.
This applies to life, as well. I know I can't go to gatherings and events like I used to. It's the new "normal" for me. And sometimes, it's hard for others to understand.

Wednesday, March 5, 2008

March Sojourn

I took a walk down by the creek across the road today
with Quincy and took this photo to share with you.

Monday, March 3, 2008


I have actually been feeling pretty good the last few days. Something has freed up in my surgical area and it's wonderful. I can bend down and get things off the floor now without that feeling of tightness or the sense that I'm harming something.

Prayer request: I have a friend who was in the hospital at the same time I was there. She and her husband picked me up at the airport (JFK) when I was there alone and I'd never met them before. Her husband checked on me twice a day. And she went through so much, was in the hospital 7 weeks! She has 3 small children. And is a lovely young woman. Now, she has to return, there have been some complications. Please pray mightily for her. My heart just breaks for her.

I went for a walk yesterday across the road. Gushing from the snow melt on the foothills and mountains to the north, the seasonal creek has come alive with a voice and a presence! The water, milky green and clean-looking, is about two feet deep. Quincy and I first checked out an old dump by the cliffs, then picked up the pretty deer trail which led us down to the bottom. It's not far.

Down-creek just a little ways, I then took other trails to end up at a dumpsite I'd never seen before. There are no wheel tracks leading to it, so it seems it is quite old and not been used in a long time. Winds combed the tops of the Ponderosa Pine as I poked around and found a rusted tube with an interesting aluminum top with a flip-cap. I deciphered the raised lettering on the side of the tube: "Williams Quick and Easy Shaving Powder." I never realised before that there had been shaving powder.

I do remember as a kid that we had tooth powder. I'd shake a bit into the palm of my hand, and then rub a wet toothbrush in it to create a paste with which to clean my teeth. I guess men used to do the same with "shaving powder." I tucked the old tube into my shirt pocket to bring home and put on the shelf in the shop next to the old bottle and the can of Boraxo soap I've already found down there in my explorations.

Though it's not far and I walk very slow and sit down on rocks to rest, coming home I was so incredibly weak, I could barely put one foot in front of the other. I thought of one thing: how weak I was, and then lyrics to an old hymn came to mind: "I am weak but Thou art strong. Jesus keep me from all wrong. I'll be satisfied as I walk, let me walk, close to Thee." That's all that matters.

An old friend called me tonight and we had a deeply touching visit. He encouraged me to try to make it to an annual gathering that I have attended 14 times in the past. I had made up my mind not to go, even though next year will be the 25th anniversary of the event. Now, I can see that by doing that, I am taking the easy way out. Paul encouraged me that I needed to be there, and his words meant so much. I'm rethinking it. It feels good to be missed.

With all the people I know who are suffering and enduring such deep problems and challenges, tonight, I feel almost shamed to have ever mentioned any of my own. I am so blessed in so many ways, on so many levels.