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.

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!

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." http://www.azcentral.com/community/swvalley/articles/0305gl-miracle0305-ON.html



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.

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.

March Sojourn

I took a walk down by the creek across the road today

with Quincy and took this photo to share with you.

Weakness

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 long...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.