Wednesday, July 30, 2008

Swallow study

Well, it was interesting!

Two very nice young women were the speech pathologists, plus they brought in a doctor. They put barium paste onto all kinds of food, applesauce, bananas, crackers, turkey, etc. And watched thru flouroscopy the food go down.

The end result is that I'm swallowing fine. It seems the opening to the esophagus is slow to relax after the food passes and they think this might be what I feel and am mistaking as food.

I also took a barium pill and swallowed that and felt a bit like the pill was still in my throat, like I always do, but they said the pill went down really fast and they followed it all the way down to my stomach. They really don't know what is up.

They said because I've been diagnosed with brainstem compression, that I will always have the possibility of swallowing problems developing. And they also understood that if I had gone out and done something that would have fired up the brainstem compression, that the test might have come out differently.

I took a pain pill about an hour ago and just now am I feeling like that feeling of a pill stuck in my throat is starting to go away. It makes sense that it could be muscles in there that are not exactly spasming, but are staying tense and giving me that sensation.

I guess that's the gist of what we found out yesterday and I am glad too that I'm not in danger at this time of aspirating. I told them all about Chiari which they knew nothing about and they were hungry for knowledge. I had two biz cards for CCI which explains CM and gives the website for CCI for them to go and learn more info, they were quite happy to get them. They are young and eager to learn.

Praise God. It's good to know that it's not actual food that is sticking. Also, when I asked what they thought about the time when I had such a lump in my throat, it felt like a bolus of food, and my vision darkened and I felt light headed and got tingly etc, what did they think of that? And one said, "Perhaps you had stopped breathing." And I thought she was right on as I do have that issue of stopping breathing (after expiration) and having to get things going again consciously. So, I felt they were a blessing, it all only took an hour and I felt okay about it all when I left.

Note: last night, I was e-visiting with a friend who has had the fusion I am going to have. She told me that she and several other fusion-folks she knows also had the sensation of lumps in the throat, also had normal swallow studies, and all of them had resolution of that lump in the throat after the extraction fusion. Very interesting for me to hear!

I've decided now to start a fusion notebook. Everything I can learn about them, including emails and posts from others who have had this kind of fusion (craniocervical fusion with extraction upwards at TCI in NY). I am going to start asking lots of questions and thinking more about going ahead and having this procedure done.

Yes, I fear it. I fear it will fail. I fear I will need multiple revisions down the road. I don't like the sound of wearing the halo for four months at least post op. It is a huge step for me to decide to take, IF I decide it.

But my head is feeling wobblier and wobblier on the top of my neck and my symptoms are increasing. Dr. B, my neurosurgeon, told me that he knew I would definitely reach a point where I'd be ready for surgery and ready to take the risk. I think starting more in depth research and interviews will be a part of this process.

Berry good year

This year, I have berries galore! The strawberries have passed but there were so many, I tired of picking them. That was easy to do since bending over to search for strawberries was one of the hardest things on my tethered cord area and always instigated a lot of burn in that area.

Now, it's blackberries and raspberries, and my freezer is full of bags of them. And they are still producing. I learned long ago to Miracle Gro berries and to keep them picked in order to stretch out the harvest. They are like deadheading a flower, you must keep the berries picked clean for more berries to be produced.

I love berries on my cereal, it's such a treat. There is simply nothing tastier than picking fresh berries off the bushes and putting them right onto my cereal in the morning...or the afternoon...or at night.

I cannot pick berries without thinking of my Dad, either out bare-chested at the tall blueberry bush that grew near the big poplar in our back field, or walking through the back woodlots with me and scouting out a few berries to stop and enjoy, or driving to a favorite berrying spot under some powerlines and picking until our buckets were full and my mouth was blue and my teeth were blue and my father invariably said, "You ate more than you put into your pail!"

Today, I went to PT and again, tonight, I'm in a lot of extra pain. Just anything, anymore, causes more pain in the occipital part of my head. I am really thinking about the fusion, positively wondering if the stability it will give to me will give me a lot of happiness. Yes, happiness...

When I wear my CTO sometimes, I experience euphoria, a warm, fuzzy, dreamlike state that says all is well with the world. I also experienced this last week while at PT when the therapist set me up in the Pronex traction unit upon two pillows. I don't think it was the traction that caused the euphoria, but I think it was feeling secure and stabilized.

Later, all of my neuro symptoms riled up in full force and I have vowed not to do the Pronex again. Nor the inversion table. I'm just going to leave that area alone and see what transpires as far as a fusion goes.

An old, terribly bothersome symptom is back. Paresthetic itching. I had it for a couple of years and then it went away for a couple of years. I would feel itchy all over, and my arms would be the worst, they'd itch so badly and then that would morph into lancinating pains that went to the very core of my pain center. I mean, it had "all access!" I often would lay on a bed with my arms stuck out in front of me wishing I could cut them off.

So, now, it is creeping back. I am feeling more itchy all over now, and then I'm also getting those spots of itching on my arms. I don't know why it would return. Who knows those things?

After the tiny bit I did at PT today (lying on the soft table and picking up a leg and barely reaching forward with my arm and hand to touch my knees a few times), I got up and walked out and felt the minimum amount of strength I usually have sapped right out of me. The rest of the day today, I've felt weak and like I've had to get the weight of my head off of my spine. I laid in bed and rested for 90 minutes or so.

I have had on my to-do list for six months at least to write a short story about my husband and his spur business. Even when I've not looked at the list, that duty haunted me. I finally felt like I just couldn't do it and would tell the magazine editor that he should not expect it.

However, he ran a small blurb about the spurs and we got two orders right away. And several interested emails. So, I knew in my heart that I needed to buck up and do the right thing and hammer out this chore. I wrote the editor and told him to expect the piece by the end of the week.

Good, I have a deadline. I've made a commitment. I have to do it. So, I've been working at it all week, just little things like "carry pictures to the office" one day, anything toward completion of the project.

Listing all of the steps that are necessary for something like this, I can see why I'm having a hard time at doing a job I did for many years, was pretty good at and really loved to do. Let me list them here:

First, go to closet and go through old picture albums and pick out any that will work to go with the text.
Then scan those into the computer.
Then go over those pictures and photoshop edit as needed.
next, take photos of my husband in the shop
Get those developed (did I mention I've lost my digital camera?)
Pick out which will work.
Scan those into the computer and edit.
Write the piece.
Edit the piece on the computer.
Print out article and edit again.
Print out article and edit again.
Do final edit.
Email to editor the final manuscript plus the pictures with cutlines (the explanatory text under photos)
Pray editor does not want any changes.

Now, I've mentioned that I've learned something about cognitive dysfunction and how there is something called set-shifting. This is where you do something, then forget about that step as you go to the next step in the process. Whatever you may be doing, it has many, many steps. You might think you are only having to do one thing, but usually, there are many steps to completing it.

I wonder if it is the set shifting that gives me so much difficulty with thinking and with doing bigger projects (or smaller projects!). Even something listed like "scan photos into computer" is actually made up of many steps (lift lid of scanner, place pic, bring up scanner program on computer and go thru steps to start scan, lift lid, remove pic, pick out another pic and place it on scanner, close lid, etc etc).

Thankfully, I am going to be able to meet my self-imposed deadline. And I feel really good about completing a project I've avoided for so long. Even if something that should have taken perhaps 3 hours takes ME a week.

Something I so truly love is the sight of lace curtains on a window, and the breeze blowing inward, floating the fabric with a life of its own. Today, lying on the guest room bed, I enjoyed this pleasant experience while listening to far off dove call.

Wednesday, July 23, 2008


Sunday, we went for a jaunt in our old Toyota pickup. We never got further than 10 miles away but the views were soul-satisfyin'.

Taking our battered county map, we headed up Knight Road to Cedar Valley Road, passing a lot of places on both the left and right. One reminded us so much of a log cabin we'd built back in about 1976, up in northern Idaho. We just cut some trees down in the middle of a lodgepole stand to clear a spot for a cabin, dug some holes to put butt-cuts from the largest pines we could find in to create our foundation, then started cutting down nice, straight pines that were right close to the site and hauled them against our hips, strong, tan arms hanging down for gloved hands to grip the logs tightly, my husband on one end of the log and I on the other. We erected a 12x16 foot cabin that way and lived in it for 3 years.

But on Sunday, we continued on to where the road turned to gravel and the name changed to Monument Road. We just kept following that, revelling in the higher ground, undeterred by the rocky road which demanded we crawl forward in first gear. My husband kept asking me if my neck was going to be okay and I kept saying yes, even though I knew I'd be paying for it in days to come, but to me, the price was fair and I was willing to pay it.

We kept searching for an old monument placed up here by the Washington Historical Society back in 1909 to mark the spot a man was murdered by a band of Indians, but we never found it.

At the top, we were stopped by a gate leading onto Yakima Indian Reservation land, so we turned around and then went up a different, less traveled spur off the main "road." At the end, an old and decrepit cabin wobbly stood, and nearby, an old barn with just one shed-style roof (no center beam with roof to either side). The slant to barn roof was ridiculously steep and spoke to the amount of snow possible up here in this old cowcamp.

We parked and walked around a bit, the cabin long ago uninhabitable and filled with junk and trash from past hunters' usage.

Fat and slick cows stood around, for here was an excellent spring, perhaps the best spring we've ever seen. It had been developed to where the water was piped down into some corrals and then arose from the ground vertically, coming up through the centers of two, very big equipment tires, the bottoms concreted to hold water. The water bubbled up with a lot of strength, creating a nice fountain which keeps the troughs clear of debris and algae. As the water overflowed the tire troughs, it poured downhill into a man-deepened area which is called a tanque in the Southwest and perhaps a stock pond here. As that water flowed over, it entered another stock pond and then rushed on downhill as a creek.

The heady smell of cow filled the air, one that brought back that rush of a sense of space, not particular memories, for a lifetime filled with cow-smell is too large to surface as one memory of a distinct time branding or calving. Instead, it just evokes a sense of identity, a way of life that we'd both known for so long and we both so miss, though we never speak of it that way.

Far off, once my eyes have soaked up enough of the scene in the immediate foreground, I finally notice layers of hills, layers of colors that range from deep purples to hazy blues, all rising up eventually to a far-off Mt. Hood, snow shining in the distance, in the next state.

We poke around looking at old pieces of cast-iron cookstove and corrugated tin roofing, then walk slowly back to the truck and as we get back in, I say reverently to Pete, "Don't you wish you could ride here on Dunnie?" And he wistfully replies, "Yeah." And we back out and start the bumpy ride back downhill.


I've had lots of thoughts I've encountered over the last few days that I've wanted to write down. Didn't take notes so won't remember them now. If forgotten, perhaps they were not that profound anyway.

I just finished my lunch, sitting at the little table out back under the canvas gazebo. A turkey sandwich with lettuce and tomato and mayo, washed down with half an amber O' Doul's in a frosty glass. It's 60 degrees out and a cool wind blowing. As I ate, I deliciously read further in the novel, Cold Mountain. It's not a happy tale, but the writing is juicy in the author's choice of words, poetic in places. Thought provoking.

Once finished my lunch and reaching a good stopping place in the book, I stood up and crossed a few bare-foot steps to the fruitful raspberry bushes in the raised bed, and sensually enjoyed my dessert: plump, ripe berries.

And all the while thinkin'. Thinkin' on how there are lots of ways to look at a thing. This philosophical journey started back when a gal at the physical therapy asked me what happened to me, as I sat in their office with my CTO vest on. When I finished telling her, she looked down at her work on her desk and dismissively stated, "It coulda been worse."

I felt cut-off and dismissed alright. And I've thought some on it. Lots of thinkin' can come from a little comment like that. I know it "coulda been worse." I know that better than anyone. I remember telling my story to an old cowboy once and I tagged on at the end of the telling, "It coulda been worse." And he laughed and said, "Yeah, but it coulda been a whole lot better, too!"

Then, I was sharing with my sister something I don't like to voice and choose not to do so most of the time. Perhaps all of the time except today. That I kinda got cheated out of about 30 years. That my mother and the neighbor next door, both 83, can do more than I can right now. They can still drive. I have 30 or 40 years ahead of me of not driving a car, not packing up and heading out when and where I want to.

My sister truthfully wrote back that another way to look at it is that I packed a whole lot of living into my years and followed my dreams and did a lot of stuff that most people will never do.

And that is true.

So, I've concluded that there are a lot of ways to look at a thing and they are each truth in their own right, even if they seem contradictory. One doesn't cancel the other one out.

And yes, it behooves us to choose the most positive outlook (and this is better for those we are talking to), but it's still okay to look at it like it is, the good and the bad. Because it just is. That is the truth of the matter. A thing can be both good and bad and the truth is, both co-exist and it's okay to look at both and even, once in awhile to someone trusted, voice both. '

Cause, it's the truth and that is what you live with every day. You can sugar-coat it sometimes and you can see the dark part of it sometimes, too.

'Cause you earned that right just goin' through it.

Saturday, July 19, 2008

No traction is good traction

On Thursday, I finally went to PT. I took my Pronex cervical air traction unit with me. I had tried to use this twice at home and always found it to hurt a lot, so I stopped trying.

The PT guy, Rich, is really nice and willing to try to work with me. He asked if I'd like to try the traction unit there so he could see if I'm using it correctly. I said yes. I laid on the table and he put the device on top of two pillows (I know that my anatomy now is such that my neck is very short and it leans forward. One friend told me my neck reminds her of a turtle's) to accomodate my anatomy.

It really felt good. In fact, it felt euphoric, but I know that is from something making me feel very stable, something I live without. I pumped it two pumps on the little rubber bulb and then let it off and did that a few times. Very low key, low impact.

Since then, all kinds of symptoms have amped up. I just can't be messing with my neck. The problems with swallowing have increased and the burning tingling on the back of my head/scalp is back. I have a lot more pain back there, too and a lot less strength (not that I had much to start with!). My thinking comes with difficulty and I have trouble writing (handwriting). This morning, I had something new, my left eyelid spasmed more strongly than ever before, for about an hour, and when I looked in the mirror, my left eyelid drooped and my right one did not.

I am thinking to tell Rich that I'd like to just forego the inversion table, even after all the work my work comp insurance went to to get it authorized. I just don't think I can be messing around with the positioning of my head and neck, and then with anything, it goes right back to the wrong position when I'm done and that just causes even more nerve compression.

I am so dubious about getting the fusion surgery, even if it's available to me (meaning, if my bones are good enough to hold the screws). I just don't know anyone who's had it long term and don't know how they are doing. The one person I do know has had to have a revision.

Yet, when I first put on the Johnson CTO and feel that security, especially from the forehead strap, I have to think that a permanent fusion with rods up the back of my head would give me that secure and euphoric feeling too. My problem, as ever, is that there is no one I know of who is like me, who has had these same injuries, whom I can relate to. Even TCI docs can't tell me they've done this fusion on others like me and tell me the results. I don't like being "special."

I hadn't been wearing my CTO vest for about 3 weeks. I was just sick of the looks from everyone and the constant questions of "what happened to YOU?" I didn't want my son to see me in the contraption and I didn't want my future daughter in law to worry about me. In a word, I wanted to be "normal" or at least, to look normal. I don't know what it is about the CTO that causes people to ask so freely about why I'm wearing it. I doubt anyone does that continually to someone in a wheelchair.

But, I've started wearing it again and do feel it's added stability.

I love my garden. I just can't work in it like I did last year. I can't mulch or pull many weeds, but I love the fact that it is there and I can go outside, in the fresh air and have something to "do." I can drag a hose over and water things and I can deadhead. I can't pull many weeds and I can't cut back things that are "past" but I try not to think about those things.

Since the little bit of traction, sitting at the computer for any length of time is cause for added pain and also this burning in the back of the head. I guess I'll close. Thanks for checking in!

Tuesday, July 15, 2008

Every night before midnight...

Every night, before midnight, I walk out to the barn. The sunlight warms my shoulders and challenges the shade offered by the bill of my feedstore cap as I adjust my gait to where I step up naturally onto the concrete floor of the alleyway and walk one, two, three, four, five, six steps to the first stall door on the left. I reach for the halter hanging over a hook beside the door, then reach again for the chain which, when I pull downward, allows the stall door to slide to the right.

Stepping onto the rubber-matted floor, I walk to the door in the opposite wall and whistle. It's an age-old "Lassie" whistle which all of our horses over the last 3 and a half decades have learned to come to. A high note, then a note a couple steps lower on the scale, nice and clear and just right, the wind carries it to the "medicine hat" Paint who grazes out of sight in his pasture.

Shadow comes on the run and I watch, expectantly. He tops the little bank above the barn, ears perked up and looks to see it is me calling him, then he heads down the steep incline, the first step pausing almost in mid air before the weight of his body responds to gravity and he races quickly down the hill, through the gate in the back-end of the corral and across the pen to where I stand waiting for him in the stall, arm slightly extended with a horse-cookie.

As he munches on the treat, I hold the halter "just so," to where his nose enters the halter, my right hand flips the loose end behind his poll and my left hand brings up the buckle and I can instinctively, perfectly feel the tab of the loose end go through the top part of the brass buckle and the tongue slip into the familiar hole. I never put the remainder of the loose end through the rest of the buckle: that is a tiny bit harder and not necessary since I know I will soon be taking off the halter when I put on the bridle. I just tuck the loose end into the larger ring on the side of Shadow's cheek and, turning around, slide the stall door back open, and lead my boy into the alleyway and toward the front of the barn, to the grooming and saddling area, his hooves clop-clopping on the concrete floor.

He stands on the rubber mats while I tie his lead rope in the standard rancher's slip knot. My fingers do this without any thought from me, borne of 40 years of tying such knots every day.

I next turn to the tack box along the barn wall behind my horse and bring out a curry comb or brush, depending on how dirty Shadow is today. With the brush, I sweep short strokes down between his eyes, which he loves and nods his head up and down as if to help me do the job.

Then, I start up behind his left ear and start sweeping, sweeping to the right and as the hair lies. I see perfectly every spot of color in his mostly white coat. I see his withers shiver with the touch of my brush...I see the reddish-brown patch across broad back...I see the same colored ruddy shield of color on his chest. I inch down each leg, under the belly, over his hips and hind legs, then walk over to his off (right) side and repeat the process. I notice, as ever, the hidden patch of color under his white mane, the one that causes a few black hairs to thread their way through the tangled mass of white hairs.

When done, I return to the tack box and get my hoof pick and, picking up each of his feet consecutively, I clean them free of manure and rocks. I know his frogs like the back of my own hands.

Next, I bring out his saddle pad. Today, we'll go western, though some nights, we saddle up with English tack. I place the pad "just so" on his back. After twelve years of riding this animal, I know where the pad goes and I know that one inch forward or back of that sweet spot is simply unacceptable.

Next I bring out my trusty "Salisbury" saddle and, with a balanced swing, I bring the 35 lb. saddle poised over his back and allow it to settle gently. I walk to the off side and bring down the cinches and loop the breastcollar up over the horn, all straps are straight and ready to go.

Back to the near side, I reach under for the front cinch and can feel, perfectly in every way, the latigo as I go down through the cinch ring, back up through the cinch ring on the saddle, back down through the cinch ring again, snugging it all up gently and finding the right hole for the tongue in the cinch. Next comes the back cinch and then, the right hand reaches up to the horn, lets down the breast collar and pokes it under Shadow's neck to my waiting left hand, then run the strap up through the ring in the saddle and back to the buckle. Lastly, I reach between his front legs and buckle the breastcollar to the ring in the middle of the cinch.

Back to the tack room, I put on my chinks, the ones Pete made for me 30 years ago out of a piece of elkhide. Leaning forward first to one side and then the other, feet spread apart, I clip the 3 snaps down the outside of each leg. I put on my spurs, the right one lost a rowel a long time ago but I don't care. Shadow just needs to know I have them on and when I do, I don't need them. Horsemen know how that is.

I reach for his bridle, the one with the leather romal (reins) and the Sleister bit. It has fancy red and black braiding on the headband and cheekpieces and a little tassel of horsehair on the throatlatch. I shut the tack room door and then head back to Shadow who waits patiently at the hitching rail.

I take off his halter, always untying the rancher's knot at the rail so there is no chance of him stepping in the halter and getting hung up. Then my right hand takes the weight of the heavy bridle and rests between his left hand balances both the bit while at the same time, the fingers work to open Shadow's mouth. It's easy to do...I've done it far too many times to count.

With the bit in place, I buckle the throatlatch and lead Shadow out from the overhang at the front of the barn onto the dirt in front. I tighten the cinch and let down the left stirrup, put the reins over his neck, put my left foot into the stirrup, my left hand on his mane and my right on the horn, and swing effortlessly up, gently settling into the comfortable, familiar seat of my saddle. Shadow waits because I've trained him to wait and not walk off immediately. Then, I squeeze lightly with my calves and he steps out, neck and head level to his withers, ready to face the trail ahead.

If I'm lucky and I haven't fallen asleep yet, I can actually feel my hips moving with his motion. I can see his dark brown ears with the black tips on each one. It's all as real as if I am actually there.

Sunday, July 13, 2008

so little strength

It has been two weeks since I posted. I did try to post a few days ago, I wrote a long message, but when I hit "submit" the message was deleted and gone for good. I just haven't had the strength to rewrite it.

Our son came to visit us over the 4th of July and we enjoyed his visit so very much. He brought his fiance, whom we had not met yet. We found we liked her very much and together, they seem to make a good couple.

We drove about sightseeing each day. The first day when we came home, I laid down in our bedroom and fell asleep with a deep worry about not being able to keep up a conversation...finding something to talk about. I prayed about it and eventually fell asleep for an hour or so. The rest of the time our son was here, I did not have any problems with conversing!

As he and his wife-to-be drove out of the yard, tears poured forth from my eyes and I felt uncontrollably sad, even though my mind knows I will be seeing him in 2 months time. I simply could not control the sadness and I cried for two days. I believe this is from the brain injury I suffered.

I remember in later years going to visit my father, who had suffered several strokes. And one time, they picked me up at the regional airport and as I walked into the waiting area, my father sat in one of the hard, plastic chairs crying uncontrollably. It was a strange thing to see, my big, strong Dad with tears pouring down his cheeks. I asked my stepmother what was wrong, and she said simply, "He's happy you are here."

Later, I learned a bit more about the effects of a stroke on a patient, and how the controlling of emotions is so great affected. When I had a brain MRI after my injury, the radiologist reported that the lesions found on the brain were indicative of either MS, stroke or trauma. Obviously, they were due to trauma in my case, but this leads me to believe that some of the challenges I face can be compared to someone dealing with the after-effects of a stroke. Thus, the tears and deep sadness when my only child headed 900 miles south.

Above is a picture he took of Mt. Hood. We ended up exploring a few back, dirt roads at the northern base of Mt. Hood and got really close to the beautiful, snow covered mountain.
Last week, we spent some time getting ready to do a vendor table at a local Mounted Shooters show, to possibly sell some of my husband's handmade spurs. We just did that this weekend and though the weather was very hot, it all went well.
I am finding, for myself, that I am pretty weak all the time and that weakness shows up both physically and mentally. We were situated just at the base of the announcers booth and I knew I should go up to the announcer and show him the trophy spurs we'd made and give him one of our business cards to drum up some advertisement. But I just could not drum up any strength to do it!
I also knew that if I could take some photos of the cowgirls as they raced past balloons on poles, shooting them out with black powder charges, I could get some amazing photos I could sell to a few magazines. I have the contacts with the magazines, that is easy. But I just could not summon the energy even mentally to walk to the fence and concentrate on taking pictures, and also the thought of submitting them to my editor friends, the process of that seemed too daunting for me to handle. Although I took my nice camera with the long lens, I did not take a single photo, except of our sales table.
As we sat at our table today with an incredible, sweeping view of Mt. Adams to the northwest, we noted a small plume of smoke arising from the base of the mountain. As the day went along, we watched as the forest fire "blew up" into a large fire that now leads as the major headline in the Portland news. It will be one of those fires that will take a long time to put out, we can tell. The peculiar smoke came over our house this evening, dark in places and menacingly deep red in others. They said on the news that they believe the fire was caused by lightning that took place at the end of June!

Tuesday, July 1, 2008

One step forward, two steps back

It has been nine days since I last posted and I have had a good nine days. I've really felt so much better than I've been feeling since my surgery. And I am feeling finally like I'm experiencing "some" recovery finally. It's been a long seven months.

Oh, I haven't thought of doing any half-day hikes or cartwheels or 5k walks, but I started thinking I might be able to ride in a car on a trip more comfortably, actually be able to go someplace in a touristy sort of fashion. And I've thought that perhaps I would not go back for the fusion if I could continue with some improvement.

Then today, wearing the Johnson CTO vest and going the 35 miles to our shopping town and so many of the same ol' symptoms came rushing back for no apparent reason. My brain started clouding over and hurting, and my whole body became weak. I was gone for 3 hours but when I got home, I headed right for bed. It was 12:30 pm.

And I just laid there thinking about the uncertainty of the fusion. It's a huge procedure that looms darkly in my future. The decision to have it done is BIG. And it's so permanent, no going back.

If I only knew someone who has experienced exactly what I have had, the Jefferson fracture and the atlanto-occipital dislocation...and if I only knew someone with THOSE things who has had this particular fusion...or ANY fusion. This is the hard part, the lonely feeling and the knowing that even though my neurosurgeon says the fusion is what I need, I am still the only one he will have done this to who suffers with the injury I have.

Those who go through these surgeries state that you will know when it is time, you will not have any doubts because you will be that bad off. So, I must not be ready if I keep having these doubts.