My Christmas message...a winter story

I remember times like this.

Back in 1979, we were living on a ranch in New Mexico, way up on the Continental Divide.
We were snowed-in that winter. The snowplow stopped 9 miles from our ranch, and our nearest neighbors lived 2 miles beyond that. This meant we had to ride out horseback to our neighbor's house.

We were 25 miles from town, so we couldn't get to the PO to get our mail. Our neighbors would get our mail for us, and every Wednesday, it was pre-planned that we'd ride the 11 miles out and pick up our mail from them.

Some weeks, we could not go because there was a snowstorm on that day. Those weeks were hard, because that meant we had to wait a whole week more to get our mail! ANd our mail was so precious to us! This was before computers and email.

My father, 3000 miles away in NH, would record messages to us on cassette tapes. How we loved getting those tapes! I still have them, and gladly so because today marks the date, 14 years ago, when he died. However, I have never gone back and listened to the tapes I have because it hurt too much to hear his voice. But I still feel glad to have the tapes and save them for my Dad's grandson, Jesse.

Anyway...

when we got to our neighbors' house, the husband, Johnny, an old Polish rancher who'd lived on that ranch every day of his life, helped us put our horses into his barn and we'd loosen the cinches and give them some hay, then we'd trudge across the barnyard to their house.

I'd be carrying the egg cartons containing the eggs I had gleaned from our hens on the ranch. Our neighbors would take these 3 or 4 cartons of eggs to the feed store in Gallup, who would then sell them for us. That was the ONLY amount of money we made during the winter, those few precious dollars from the sale of the eggs I had packed across the back of my saddle's cantle where they'd ridden snug and safe against my lower back, even when my horse had to lunge through snow drifts or had fallen through ice into swiftly running creeks.

In Johnny's house, we'd take off our boots and warm up our toes in their warm kitchen, while Ann, Johnny's wife, warmed up a lunch that often had delicious Polish sausages made from their own ranch beef.

How precious those visits were! We'd hear the news of the outside world and gossip about other neighbors and also hear old stories from Johnny and Ann. They were good folks, and good to us.

Too soon, it was time to bundle back up, take our sack of mail (letters and the Readers Digests that someone had purchased a subscription for us) and put them into our saddle bags, tighten the cinches, snug up our scarves and hug-goodbyes to Johnny and Ann, riding off down the county road until we got to where the snowplow had stopped plowing, then we'd point our horses toward the snowbanks, they'd clamber over and then seek out their own tracks that had been laid down in the snow that morning. Nine miles of hard riding lay between our horses and their warm barn; between us and our cosy cabin; between
our cold fingers on the reins, knitted caps pulled down over ears, and the joy of pouring out the saddlebags onto the big table in the cabin and feasting on news from our families.
This time of year, there'd be Christmas cards, and we'd read over and over the handwritten notes inside. My mother would send news of her family; my sister in Hawaii wrote long letters of her beginning of pregnancy and the dreams that such a blessed event promised (an experience that I would soon learn was also my own!); the Readers Digest held photos of seductive foods displayed for the camera in ways that would lure the reader to purchase Borden's Eagle Brand Condensed Milk and Land O' Lakes butter.

Could the photographers have known that a man and a woman surviving the long winter atop the Continental Divide in NM were drooling over their sumptuous presentations? Were they in New York City or Los Angeles with their cameras and lights while we were packing precious eggs over the miles and through the worst winter that mountainous area had seen in 50 years? I still can see in my recollection's eye the strawberry shortcakes that graced the small pages of the magazine not unlike the Sirens perched on rocks who would send out their song to call in unwary ships to meet their battered end upon the storm-ravaged shore.

While we were eating eating eggs which grew more scarce as the winter continued that year and drinking the milk that I gleaned from the wild Angus range cow, fighting off her hungry calf for just a cup of her precious nectar; while we had only pinto beans, eggs and milk and precious little else We had no flour or condiments, only eggs, milk, butter from a jar of cream --and cream from an Angus cow is little to nothing!-- and pintos. There are only so many ways to cook these ingredients and over the 5 months we were snowed-in, I believe we discovered them all!

We learned again that winter that blessings abound and are easily found in the little nooks and crannies of life.

A card lovingly mailed from far away; a note scribbled in haste before the stamp is licked and applied to the envelope; an extra half-cup of warm milk from the recalcitrant cow who would only allow me to touch her bag while her nose was buried in oats in a pan on the floor; the extra egg from the hens who faced bravely the cold and the tufts of snow that blew in through the cracks in the coop; the lovely, sunny day that allowed us to saddle horses and head out for a long-awaited visit over hot, strong coffee and the laughter that accompanied our visit with old-time ranch folks; yes, even the photo of strawberries and whipped cream and shortcake, that did not fill the belly but did produce the taste within our mouths.

Blessings abound. If all we have is a room, we can look around and know that blessings abound.

It's not hard for me to liken our treks through the drifts toward the shelter of our friends' home at the end of our trail to another trek near Bethlehem so long ago. I, like Mary, was expecting our first child, a son. Our destination was unknown, in that we could have arrived at Johnny's ranch gate only to find them gone to town, in which case, we'd turn our horses around and head back, empty-saddlebagged and disappointed, toward our ranch home.

I can also compare our winter adventures to the lives of us all. We struggle through rough times, find some shelter, shade or warmth once in a while along the trail, but in the end, there is the reward at the end and all troubles are solved, when we accept the offer given by our neighbors (or, as pertains to lifes' struggles, when we accept the hand of the Lord which is extended to every single one of us today). An extended Hand does no good if we do not do our part and accept it. If we'd not accepted the neighborliness of Johnny and Ann, we would have stayed, along with our horses, out in the cold snow, no warm meal and none of the last week's mail!

Merry Christmas to all.

My prayer is that all who read this will accept the extended Hand of Jesus who offers to
give to us the best gift of all: eternal forgiveness and everlasting Love! He has the best shelter of all from the
storm of Life's travails.

With love,

How it went at my last neurosurgeon appt.

On Monday, I went to Portland, OR to see my latest NSG.

I had hoped to write more carefully a report for my readers here, but have been suffering so much from the trip that I have decided to just post a pasted copy of a letter I sent to my sister. So, here you go...

You remember Dr. R the last time I saw him? He was a bit curt with me....after just talking to me for 15 minutes total, he'd said that there was no surgery he could do to help me. But he promised to look at my imaging with his colleagues. There are quite a few NSGs in that big hospital/facility.

After that initial meet-and-greet, he then had me go have some xrays done of my neck in flexion and extension. Later, I got a copy of his report from my primary and learned that after seeing the xrays, Dr. R wrote that there IS movement in the C1 when I bend or extend my neck.

Next, I had the SPECT (cervical)... and a lumbar MRI with and without contrast.

As I might have mentioned before, I set myself up mentally to expect nothing. Was hopeful for nothing. I told myself the doctor would say the imaging showed I am fine, he'd say "Why are you here wasting my time?" and then I'd go home once again feeling there was nothing to be done to help me.

We had to wait 4 hours for him. This was because Dr. R was in the OR doing an emergency surgery.

We almost went home without seeing him. My husband was so patient! But at 4 hours, to me it felt like time to head home. Then, they brought me back into the exam room (we'd been there once before when they thought the NSG was on his way, but then he wasn't able to come right then so we went back out, down to the cafe, etc, for 2 hours more)...

He came in holding my 3 pg letter I'd faxed to him last Thursday, the one posted here before this post. And he was very straight-forward, very nice and kind. He said, "You need to have screws put into your C1 and C2. You've been waiting six years and it isn't going to get any better. It's time to just go ahead and fix it."

I was shocked! I asked him if he would also put a plate into the skull base (occiput), and he said he might, that they want me to have a new CT of the skull base area and, if necessary, they will add the plate. If they add the plate, this becomes a craniocervical fusion like I've been hoping to have all these years.

I asked him how many craniocervical fusions he's done and he said, "I do them every week. I did a C4 and 5 today!" and I said, "No, not a cervical fusion, a cranio-cervical fusion." And he said, "Well, they are not seen that often...but I do one about once a month." I thought that was plenty of experience and said so.

He said he might go down to C3 with the fusion. I asked if there was bone enough in the C1 to put screws to and he said the new CT would tell them that.

I didn't go have the CT right then as he suggested, it was late and I was in so much pain. I will go back in a couple of weeks to get that done (March 22). Need to wait for the work comp to approve it anyway.

I'm not jumping on the wagon yet. He knows that. I did that at TCI but not this time, I'm going to give this a lot of consideration. I like the surgeon, I like being closer to home (2.5 hours away). I like the hospital, too, it's very well-known here in the NW. Been around a long time. Dr. R said I'd be in the hosp. 2 to 3 days. He said that the fusion would help my neck pain and would help the electrical feeling on my scalp, but it wouldn't help the swallowing problems. It would not in any way help the below the waist symptoms.

He suggested maybe I'd want to try pain management and have a lumbar injection and see if that helps my pain below the waist. However, I have since remembered that I have arachnoiditis, and had that huge mass of arachnoid adhesions at the lumbar region when they opened me up for the detethering. Mine was due to trauma, but medical articles reveal that arachnoid adhesions are usually caused by interdural injections such as pain injections and lumbar punctures. I think I'll pass.

Oh, this was a big thing to me. He was showing me the scans and such, and had the normal mid-sagittal view of the head and neck that people with chiari use to judge their condition, and I noticed the cerebellar tonsils (not tonsils in the back of your mouth) are shrunken way up from where they were! Even from last June when I had the imaging done in NY.

I told him that, that they were way up from when I had the TC surgery and he said, "Maybe that surgery helped you then."

The big thing he showed me, and he was talking so offhandedly, like "No big deal, you must know this," but he had the pic of my C1 that I always show people the big break in it...and with the mouse cursor, he flew down to the bottom right part of the C1 and said, "There is another big non-union" (meaning break) and I said, "Really?
"
And he still acted like no big deal (I think they are trained that way so you don't get anxious). I have seen that big gap all along, but it was never pointed out to me. I thought it must be a view of a different vertebra or something that was covering up the back part of the C1 or something. So, now I know there are at least TWO big, non-union gaps in the C1.

I have a lot to think about, obviously. Dr. R said there is nothing he can see that can be done surgically for my TC area/below the waist symptoms. He can't see any dural ectasias, which doesn't surprise me since TCI supposedly fixed them. I got to ask him about dural ectasias and he says he's dealt with them in patients with connective tissue diseases, but he's never seen any as a result of trauma. I found online that they usually ARE indicative of a conn. tiss. disease, but it says they rarely can result from trauma.

I asked him if I could try Diamox for the DEs or whatever, and he said that would be up to pain mgmt.

At any rate, I felt overwhelmed in a good way. I felt validated and treated with honor and respect. Taken seriously. and also offered hope in the prospect of a surgery, which does make sense to me, and I even could imagine it could help the TC stuff, even tho Dr. R said absolutely no, he'd be very wrong to tell me there is even a possibility.

I might send my stuff to Dr. Menezes in Iowa who is supposed to be one of the #1 skull base experts in the country.

I felt dumbfounded going home through the crazy city traffic. It's been a long time since I have talked to a NSG and had one agree to do anything for me.

And I didn't hardly cry. Thank you Jesus!

Collet-Sicard Syndrome, cont.

The symptoms that come with lower brainstem compression, aka Collet-Sicard Syndrome, are trouble with swallowing; sore throat and hoarseness; trouble with speaking certain word-sounds; abscence of gag reflex; drooling; changes in the soft palette.

Collet-Sicard can be caused by multiple myeloma, prostate cancer and cervical cancer and other diseases. It is considered rare. And two articles have been written, one in the US and one in China, about two different cases where the Jefferson Fracture evolved into Collet-Sicard. Both articles stated that "their" case was the only one reported in medical literature.

C1 (atlas) fractures are rare, they represent only 2% of spinal injuries. Rupture of ligaments is commonly seen together with C1 fractures.

There is also literature that explains that Collet-Sicard Syndrome can be linked to occipital fractures (base of the skull)...cranial settling and basilar invagination.

So, what are my symptoms that lead me to believe I have this rare syndrome?

Five years ago, I suffered a four-place atlas fracture, along with dislocation of the occipital dislocation (not a fracture, but certainly a movement of bone that can affect compression upon the brainstem).

I was diagnosed early on with "glossopharyngeal damage"....the glossopharyngeal nerve is one of the 4 cranial nerves affect in Collet-Sicard. My physiatrist recorded this in my chart after I complained of a constant sore throat, and upon examination, he found my right soft-palette to be drooping more than the left. (He mentioned that and I asked, "What does that mean?" And, he replied, "That you really hurt your right side.")

I also have my notes from my six-months of speech therapy post-injury, and find the drawings done by my speech therapist to explain the vagus nerve and the glossopharyngeal nerve, both nerves part of the ones affected in CSS.

I have reported "sore throat" in my symptom lists which I have given to doctors for the last five years, each time. I also easily experience hoarseness if I am in a "talking" situation, either on the phone or with a friend. My throat gets very painful and my voice gets gravelly. This is one of the reasons I do not like to talk on the phone.

Swallowing has been a long-time complaint of mine. When I swallow food, it enters my throat but stays at the top. Sometimes, it will regurgitate back into my mouth, but not often has that happened. The food just stays there until I eat bites of other food, which will move the first bite down, but then the latest bite again stays at the top of the esophagus. I envision that my swallowing muscles just are not working.

Sometimes it takes up to 30 minutes for the "last bite" to move down the esophagus, the food moves that slow. Today, I picked one small strawberry, ate it and it stuck in my throat for at least ten minutes.

I do not choke or gag at all when the food is stuck. I'd think I would. I have always had a very hyperactive gag reflex and would often have trouble swallowing one medium-sized pill. Now, I can swallow three or more pills at once.

I asked my local doctor to test my gag reflex last week. He did so, and it was obvious I have NO gag reflex. He pushed back his chair and remarked, "No gag reflex! That's brainstem stuff!" I live in a very small town and doctors here don't play games, they just speak plain language and don't try to hide things from you. It's refreshing.

Drooling. Yes, I do. I didn't make this connection until recently...but I remember when I was at my son's wedding last September and he motioned to me that I had some collection of "stuff" at the corners of my mouth. I mentioned it my husband and he said I often do. Now, I notice that I have to intentionally swallow saliva, as it seems that autonomic function is not working. If I am talking to someone, I really have to stop and swallow, I build up a lot of saliva in my mouth.

I just read something on the web I'd like to investigate further, it mentioned something with CSS about the sternum. That reminds me easily of a symptom I've also reported for five years, a feeling of thumping in the middle of the chest that seems to stop my breathing. I was sent to a cardiologist and wore a Holter monitor and reported many episodes, but none of them showed up on the monitor as a heart event and, except for mild mitral valve prolapse and stenosis, I have a healthy heart.

To me, during these events, it's felt like my diaphragm is stuck. I find it interesting to hear what people think is happening in their bodies, spoken in non-medical terms and with little knowledge of even the possibility of what they are describing as existing. As far as I know, only TV's Dr. House is concerned with the totality of symptoms that a patient might list. All the doctors I've visited, even the well-loved and great ones, say, "Tell my your top four complaints." I don't understand this technique at all. It might be successful in helping the doctor move patients in and out of the door, but the top four complaints could be symptoms of thousands of conditions.

Perhaps that is why we find Dr. House so intriguing. He is a brilliant diagnostician who plies his trade not because he loves patients and cares, but because it's all a big puzzle to him. Most patients I know wouldn't care if a doctor cares or not, if they just tend to the business of diagnosing, the patients would be happy indeed!

No gag reflex; drooping of right soft palette; chronic sore throat; hoarseness; drooling; difficulty with speaking certain words and sounds; symptoms in the sternum area.....

and the REASON for it all, the 4 place Jefferson Fracture, the atlanto-occipital dislocation all evolving into "severe functional cranial settling" all adds up in a clinical fashion to convince me that I am one of those very rare ones who has had her JF result in Collet-Sicard Syndrome.

continued on the next post.... "Why do I feel the need to "get" this diagnosis, and what can be done for those with this Collet-Sicard?"

New Message Board

Our new message board, Healing Friends, is doing wonderfully. The program has a statistics page and we've had 530 page loads today alone! God is so good. Come on out and join us! www.runboard.com/bhealingfriends.

Today, we've had a little sleet, a little sun, clouds, woke up to a dusting of snow, typical mountain weather. Though, Caroline, certainly not as bad as you over on Vancouver Island! One foot of snow this morning, yikes!!

I've been feeling about the same. Had an awful lot of pain this morning for several hours, after I took a little walk yesterday. Quincy and I saw ducks and a deer running through the woods. No, the ducks weren't running! They were flying and quacking as we scared them off of their paddling place on the shrinking creek. Cold nights these days means the snowmelt-fed creek is slowing down, but is still a pretty little stream.

Not much to relate or tell. I will have to dig out some more from my journals of the days after my injury.

Thanks for dropping by. Those of you who might be reading this because you found it while Googling about a Jefferson Fracture of C1 fracture, come join us on Healing Friends and click on the topic Jefferson Fracture! Be the first JFer to join! There is so much we can share.

Message/chat board for Jefferson Fracture folks

Also for those of you with skull base fractures including atlanto-occipital dislocation!
As far as I know, there is no other place for you to chat that is exactly for these
trauma-related conditions. It's brand new, so come and post and let's learn about
each other. It's a lonely world out there? Don't go through it alone like I did!

http://www.runboard.com/bhealingfriends.f13

See you there...

After publishing the last message, I went over the new post for a final edit. My eye was caught, off to the right, by that fascinating picture from the 3D CT scan done in NY in January, a year ago.

And I looked at it for only a second when it hit me. Aha! THAT is what is hurting on the right side of the back of my skull. I've re-posted that picture above.

Looking at the base of the skull, you will see what looks like a long-ish vertical bone (it's actually dipping downward to the left). That is the posterior of the C1 and that is the vertebra I broke in 4 places.

Now, you can see the pointed middle of that vertical bone and how it is pretty much digging into the center/bottom of the skull. To get that image, I was lying in the CT machine with my chin tucked down as far as I could make it go while lying supine. Thus, this is as FAR APART as my C1 and the suboccipital part of my skull will get.

Yet, my neurosurgeon pointed this out to me and said that there should be the width of my pinky finger between the two.

Next, I looked immediately to the right of that pointed part of the upper edge of that vertical C1, and I could see that is exactly where my head hurts. Because, suddenly, I'm noticing a point coming down from the bottom of the skull and pinching into the C1. And it must do this even more so when I'm in a normal position with my head and it is also moving in several directions throughout the day.

And this imaging only shows the bones, so what is between the skull and C1 that is also being pinched, like nerves and ligaments?

DUH! I'm not surprised. This is what I figured was going on. I've had this pain back there for almost four years now.

This also reminds me that when I was in the physical therapist's office last Thursday, there was the best representation of the skull and upper Cspine that I have ever seen. It was somewhat larger than real life. But not that much larger. It was held together with rubber bands. While I waited for the PT guy to show up, I really looked that over. What I found really blew me away.

I tried to make the occipital/back part of the skull "rotate" backwards onto the posterior of the C1 like I was told (and can see in the 3D CT) is the situation with my skull. And I noticed that the vertebra (C1) and the bottom of the skull are perfectly meshed, all the way around, like cogs in a wheel. In order for the skull to migrate backwards, it would have to break free from the C1. Because it would have to rock upwards and off of the meshing parts of the bones. That is the only way to make the skull come back onto the C1.

And I couldn't even make that model go into that position. The bands holding it together were stretchy and not that tight, but I could not make the skull come backwards onto the C1 like I (and you) can see in the 3D CT image above! This rocked me!

This, then, was the "atlanto occipital dislocation" that I recently learned occurred over 3 and a half years ago at the time of my Jefferson Fracture. I'm looking at it right here! The ligaments holding things together had to break loose in order for the skull to reach this position. This just floors me.

The other thing I learned from the model is that the C1 is a much thicker bone than I imagined. I thought it was probably a thin, little ring of bone prone to break easily. But the model displayed a thickness of at least half an inch in life-size, I'd estimate. A pretty darn thick piece of bone!

Again, I looked at that and all of my imaginings fell and shattered onto the tiled floor. That bone looked stout enough to hold up the world (hence the name "Atlas Bone" is given to the C1 in anatomy). And somehow it broke into four pieces, and I walked away. Albeit, I had to hang my head down while bending over because I had nothing to hold it up, but I did walk and even led a horse!

God, Jesus, His Angels, His Saving Grace and Healing power, it's all completely unfathomable!

All I know is, I sure do thank Him!