Monday, October 26, 2009

Update on Lyrica and new doctor

The Lyrica is working very well! I am taking only 100 mg, at bedtime, and am sleeping great. No bad dreams, and I don't feel too "druggy" when I wake up. It seems to help the oxycodone to be more effective...somehow.

The other thing that I noticed is that the Lyrica seems to have the most effect on the tethered cord symptoms (below the waist). It is very helpful for that. I am still very weak, and if I start to walk or "do" much, I feel the TC pain. But just sitting, resting, lying down, the TC pain seems alot more controlled.

I still have to take the 5 or 6 doses of 5 mg oxycodone throughout the day, however, for the continued pain at the back of my head. (I am going to get an appt. this week, I think, to ask my primary to up my dosage on the Lyrica since I am still below the recommended starting-dose).

That back-of-the-head pain, in fact, seems to have amped up. I do not know exactly what that pain is from. I think I've written that the pain is higher than the occipital pain (under the bottom of the skull in back) that I also have. There is a strong pain that is higher, middle of the skull but just to the right of center, that haunts my days and cause me to spend hours each day with ice paks under my head.

It seems to fade in, get strong for a few seconds, then fade out...coming and going, a slow "pulse." I don't know what this pain is. I know from my MRIs that one of my cerebellar tonsils is pressing right up against the brainstem and that is on the right side (of course, posterior or "in back" of the brainstem). So, I don't know if this pain is from that pressing...or the blockage of CSF flow that that tonsil causes...I just don't know. I DO know it is too high to be the C1.

The pain I feel "sub-occipitally" IS from the C1, I think. I always have a very tender spot right in the center. You know...if you feel the back of your neck/head and you can feel those two tendons going up to the back of your skull and you can feel a deeper spot right in the middle. THAT is "sub occipital" which also is right where the back of the C1 is.

I remember when I broke my neck, I never thought that the neck, or cervical spine, went way "up there." I thought of my neck as just being what I saw from the front, under my jaw down to my shoulders. It never had dawned on me that the c-spine actually extends way up to the back of the skull!

I was lying in the hospital bed and my lackadaisical neurosurgeon (and my concerned husband) were at my bedside. My NS was telling me that it would take a long time, but I'd "be fine." I did not need surgery, he told me. In my drug-induced cloud of a mind, I was surely happy that I did not need a surgery (so I was told) nor a halo. That I could go home in the little collar he'd given me and in a month, I'd be "fine."

Right at that time, I told the NS that I hurting so badly at the back of my head that I was sure I was bleeding there. He scoffed at that. "No, you are not bleeding back there!" he said.

I demanded he put his finger back there and see if there was blood, it was hurting so badly. He did, and when his finger just touched that "spot" that I just described as being that deeper "hole" under the skull that you feel when you touch that area, I YOWLED with pain and yelled at him to take his finger away! Just that light touch was incredibly painful.

He didn't explain why it was hurting nor what it was, but later, through research online, I learned that that is the area you find the C1.

And today, 5.5 years later, I still have tenderness in that spot. It can be very tender, or just mildly so. Perhaps it is affected by times when my central nervous system is riled up. When the higher-up pain is slowly pulsing, that is when that deep spot is the most tender. If I touch it, I "feel" it. If I were to scrape it a bit with my finger nail (which I really avoid doing), I would YOWL with pain again just like I did right after my injury. Why it is so painful still is something I'd love to know...but one never, ever goes in to see a neurosurgeon and has enough time to ask such trivial questions.

I have an appointment with the new NS.

After being brushed off as being "spontaneously healed" by my NS of 3 years in NY, AND after being told there was nothing he could do for me by Dr. Henderson in MD (he said this on a phone message a week before I was to fly there for a consult. He'd never actually seen me when he offered this opinion, for whatever reason), I was rendered "neurosurgeonless."

My psyche was so jaded that I said I'd never go see a NS again. I expected to live with this the rest of my life, perhaps 30 more years.

BUT, my primary felt I needed to have someone "in charge of my neck." And then my work comp medical examiner also felt that it was strange I didn't have a NS to manage my care. So, my primary sent a request for a NS to the OHSU (Oregon Health and Sciences University) neurosurgical division.

How it works, I learned, is that the OHSU NS dept. (forgive my abbreviations, my hands and neck and brain are tiring) has many NS's there. They receive the initial request from my primary, they look it over and delegate it to one of their doctors.

I don't believe they received very much of my file. I believe it is a simple form that is filled out on my primary's part. There are 2 "skull base" experts in this department, and I expected I would be assigned to one of them. But I was not.

I have an appointment with Dr. Brian Ragal on Nov. 18. From his brief resume online, I do not really see any expertise in the area I am having problems with. But, I firmly feel God is in control of all of this, and who I see is up to Him.

I also am not going there with any expectations or Hope at all. I have seen the LORD allow me to go 3000 miles away, have a tethered spinal cord surgery, have nothing done for the instability of my skull base area, I've cried really hard many times over disappointment, including the cancellation of my appt. in Bethesda in September (such deep and painful disappointment to be cancelled without even being seen), that I am not going to allow myself to go to the place of Hope ever again.

I'm not going to build up Hope about being understood, being "fixed," or anything at this time. I hate the idea of going there and having to talk so much about my situation and what has happened and what I am experiencing, etc. I'm tired of talking about it, and talking causes me pain in the throat. seems God has set this all up, it's not anything I have perhaps that IS the idea, isn't it. That God works when we give up and let Him do the "doing." I don't know.

I'll let you know.

Tuesday, October 20, 2009

I look to find the doe on the hill...

I just looked thru the slats of the blinds at the window in my "rest room" (as opposed to what it is supposed to be, a "guest room") to see if the little doe is resting herself, under the oaks. I strained to see her silhouette, waiting for my eyes to adjust to the brighter sunlight, the constant color of dried grasses on the ground and orange leaves on the trees. I don't see her.

I relate to her, my weakness is outwardly personified in her body. My elderly neighbor called yesterday and we visited about the little deer. My neighbor looks, with a ranch woman's eyes, at the legs of the doe and notices a large lump on one leg, a leg she "stands on but favors," according to Esther.

I easily imagine that the little, crippled doe embodies Esther's own feelings of increasing debilitation, for, at 83 and counting, the once-rowdy, vibrant cowgirl is but a dim memory of her former self.

I'd been doing well on the Lyrica, so well, I was surprised. Day before yesterday, I even walked across the road to the Ponderosa-filled, little canyon which has been seductively calling to me every day since I have lived here. I took the dogs and we saw the local flock of turkeys, who ground-flew away from us at first, nervous sight of our perceived predatory presence.

Yesterday morning, I felt "like a million bucks." Like my normal self, almost.

I've been taking about half the amount of pain killers since I take them only PRN, "as needed."

But this morning, it all crashed down and again, every cell in my body pained in such a way that I ended up back in bed in the guest/rest room and waited for the oxycodone to take the edge off the episode.

All morning, I've noticed I've been stopping breathing. In other words, my brain is not signally my body to breathe automatically and when I stop thinking about it...I stop breathing. I become aware that I've not taken up the inhalation, then purse my lips to draw in sweet breath of life.

It was a grand few days!

I knew this might happen. I remember the sweet release of morphine in MSContin for about a week, then it seemed to lose its effectiveness.

With spinal cord/central nervous system damage and issues, this is the sport we're involved in. The meds can mask the pain, which then allows us to do more, to give in to siren calls, and then, payback comes no matter the medications. Because the damage is always there, lurking lesions on the cord that never go away and can only be hidden for brief interludes.

When the meds kick in, I get up and move about a little. Most of the time, this helps but when it's really bad, like today, movement makes it worse.

Perhaps the little doe got hit by a car...suffered spinal cord damage herself. Rests when she must, stands up and walks a little when she is restless...she is in as good a place as she can be, surrounded by acorns. Perhaps I'll ask Pete to take her a bucket of water.

Monday, October 19, 2009

The dog lets me know...

The dog lets me know that the yearling deer is once again on the hill behind our house, nuzzling for acorns under the rusty-haired oaks.

This, of course, is not the same yearling I wrote about last Fall and Winter. This is 2008's fawn, pushed out by Mom so she can raise her newest baby.

I've seen this one in the front yard, drinking from the birdbath. I noticed the petunias and geraniums, the leaves of the frosted cherry-tomato plants and the wide leaves of the lingering green beans all have been nibbled by some fearless, young deer.

She (or he, I'm not sure) should be fearless, for she was born here, up under the oaks. All of her mother's fawns have slithered out of her in the safety of our upper acres, which are fenced from dogs, even ours, by sturdy chainlink.

This one noses around in the wet leaves that have been dropped by recent storms, and finding what she is seeking, she lifts her head slightly and chews on the acorns that will help to sustain her all winter. As long as it is a mild winter without several feet of snow which would prevent her from being able to paw down to the tasty morsels.

She treads lightly down the ancient deer path and settles quietly into the spot she favors because it is sheltered by the small oaks and because her mother's amniotic fluids have soaked into the earth over the years, her mother's...and her grandmother's most likely as well.

I see her silhouette, just her slim neck and her large ears, as she rests, watchful yet secure in a spot that speaks to her spirit in ways she will never contemplate or care to understand.

Friday, October 16, 2009

more thinking about Morphometrics...

...actually, more thinking about what the data is showing.

I wrote in my last post that my C1 must have slipped forward...but I'm realizing now that I was wrong. The C1 must have slipped BACK, which allowed the skull to slip forward as Dr. Milhorat said it had.

Which would really account for what I was shown in my 3D CT scan, where the back of my skull is actually resting on the back of the C1 (there should be something like half an inch between the two).

IF the C1 slipped back, that would place it further from the basion or clivus bone. And that is what the morphometrics state...

And if the C1 slipped back, it would allow the skull to slip forward, which would place the clivus closer to the tip of the dens (C2)?

As I said, it's all so convoluted. Nothing applies to me. And I just can't be that person who says, Oh well, it is what it is! I have this drive inside me to understand, to KNOW where things are. I don't know why. Perhaps other patients reading this can relate to what I'm saying. I have this deep NEED to know what is going on and why.

I feel that striving for that understanding will help me if surgery is ever offered to me. I will know the right questions to ask, and I will have more information on which to base my decision.

That is, IF I can remember what I learn. That is not a joke. I seem to be in a constant state of relearning. I learn something, I have those AHA moments...then get all "AHA'd" again a few months later, learning the exact thing again! I take notes, I write here and print it out, I try to keep it all organized, but I can't seem to keep it all in my memory.

What I also got from studying these morphometric findings is a clearer understanding that my anatomical situation IS something that baffles all doctors. It's simply not in the medical journals and studies and articles online. Oh, info on Jefferson Fractures can easily be found...but what happened with my skull and all of that, it's almost unheard of. So, who would know what to do for it?

The graphic on my last post, which is right below this, shows a Jefferson Fracture with 2 breaks. Mine had four breaks. You can see that "dens" or odontoid bone of the C2, sticking up through the C1.

Okay, dear readers, any questions? You'll be tested on this in a few days, so study hard!!

Morphometics Part II

The next measurement on my morphometrics sheet of interest to me is the

"basion-atlas interval."

The first installment of this series dealt with the measurement between the basion, the part of the skull in front of the big hole (foramen magnum) that your spinal cords travels up through to your brain, becoming your brainstem, AND the tip of the dens (pointy finger of bone sticking up from the C2). That was the basion-dens interval.

But now, we are looking at the basion-atlas interval. The distance between the basion (described above) and the atlas, or C1. Normies average 1.8 mm in this distance with a span of 0 mm and 3.0.

This measurement is so small because, in normies, your skull is sitting right on the C1!! Remember, I said in the last installment that the C1 and the occipital bones mesh together? That that was what became dislocated in my anatomy when I fell onto my head? That is why, in the normal range, you see it starts with 0 mm and runs up to only 3.0 mm.

What is MY distance between the basion, the area in front of the foramen magnum (big hole) and my C1 (atlas)?


Lying down. Supine.

When I am sitting up, under CT, the distance becomes even larger: 12.1, 12.6, 12.8.

I'm struggling to wrap my mind around this, to understand what this means. I know I'm no doctor...but I've been studying this for over five years as I've been my sole advocate for my care, as I've battled my way through various neurosurgeons who have not always had my best interests at heart.

My NY neurosurgeon told me many times that I was a pain in the ass patient. He told me that most neurosurgeons would have nothing to do with me but that he was willing to take me on as a patient and to help. He meant that I was a pain in the ass to other neurosurgeons who have never seen anyone in my situation before and would not know what to do with me. But I was not a "PIA" to him.

So, my skull is very, very close to the tip of the C2, the odontoid. Much closer than normal, much closer than the lowest control study patient. skull is further away from the C1, A LOT further than away than normies's skulls are from their C1s. Remember, you normies have your skulls about 1.8 mm on average from your atlas bone, C1, because the skull does sit on the atlas bone. At the occipital condyles.

But...MY occipital condyles were dislocated due to the injury/fall. And now, my skull is almost 13 mm (upright) from MY C1.


there's the skull, C1, C2, working consecutively from the top down.
My skull is closer to the C2 than normal, but further away from the C1 than normal.

How is this even possible?

The only premise that makes sense is that my skull slid forward and downward. Moving the skull further from the C1...but closer to the C2.

In fact, my other NY neuro told me, when these morphometrics were done and after several doctors stood around the computer screens for an hour while I hung in the invasive traction, that when I broke my C1 into four pieces, that was not the only injury I incurred.

I also had my skull break loose from my C1 and slide forward and down. He told me that my skull had, in fact, fused back into place in that position. A wrong position, but hey, it works, sort of.

This doesn't really answer ALL of my questions. I'm not exactly "getting it." But it is giving me more of an understanding of just how messed up my "cranio cervical junction" is!

Morphometrics Part I

Hmmm, what is that?

Well, it seems to be a field of study where angles, lengths, relationships, patterns of organisms are recorded and compared, then used in various scientific data recording. It can serve a variety of purposes.

In medicine, at times, it is used for diagnosis. Where I have been going for treatment in New York, morphometrics is used for just this reason.

I have the print out of these measurements, taken from viewing various CT scans I had done in New York.

There is a section for data titled "Cranio-Cervical Junction." Those not into medicalese can probably figure out that this is right where my problems lie: cranio: skull....cervical is the upper part of the spine. With my Jefferson Fracture of the C1 and "dislocation of the occipital condyles"....this is exactly the area that causes my ongoing problems (except for the pain and weakness in my lower extremities and lower back, which results either from anamolies at my "CCJ" or my tethered cord surgery area (L4, L5, L6, or both).

On this sheet, I see a measurement listed as the "Basion-Dens Interval." I know what this is, but can I explain it? The Dens is the finger-like bone that sticks upward as part of the C2 (axis) vertebra. The C1 (atlas) is a ring which sits over the C2 and together they articulate so that the head and neck can turn in many, many different positions. In fact, this articulation and action is the most varied joint in the body. Just think of how much you can move your head and turn it in so many different positions! (not me, but hopefully, you can! ha!)

Okay, that was the "dens." Now, what's the "basion?" The basion is the clivus bone, and the clivus bone is the part of the skull that is just forward of the foramen magnum. Got it? No?

The foramen magnum is the hole in the bottom of the skull which allows the spinal cord that runs up inside your spine to enter the skull. In fact, when the cord gets up high toward the brain, it becomes the brainstem. The dens (or odontoid) of the C2 should NOT be poking up through the foramen magum.

Your skull rests upon C1. The portions of the bony skull that sits upon C1 and which surround that big hole, the foramen magnum, are: the clivus bone (or basion)which is anterior, or toward the front of that big hole, the foramen magnum...

the occipital condyles which are lateral to the big hole, or to each side. These two occipital condyles actually mesh together with the C1. This is what broke loose on me when I fell from the horse and broke my C1...

and...the occipital bone, which is behind the big hole (foramen magnum). Reach up behind the base of your skull and cup it with your hand...that is the occipital bone.

So...this particular measurement on my morphometrics sheet, the "basion-dens interval," is measuring from the bony part of the skull in front of the foramen magnum down to the tip of the dens, which is, you recall, the bony finger (or "tooth" ie dens) that sticks up from C2.

The specialists take these measurements and compare them to the control study of measurements taken on people without problems at the cranio cervical junction. (we call them "normies.")

My own personal data states that the "normal" readings are an average of 7.4 mm (5.8 - 9.0)

Again, the normal readings run 5.8 to 9.0 mms as a distance between the basion and dens, with an average of 7.4.

The distance between MY basion and dens?

2.4 mm.

This was when I was lying down, without the weight of my head on my spine.
There is data here from when I was upright under CT, and the space closes even more! 2.2, 2.1 and 2.9 mm are recorded.

So, this seems to project, obviously, that the dens is much closer to the basion or clivus than it is supposed to be! No brag, just fact.

I mean, a lot closer.

So that I won't fry your brain with this I will close here and start a new post, a continuation of what I see in my morphometrics. If your eyes haven't glazed over, that is!

Tuesday, October 13, 2009

Lyrica and new doctor search and snow! Oh my!

I received authorization from my work comp insurance to seek out a new neurosurgeon at Oregon Health and Sciences University in Portland, OR. I am so relieved! Since a bogus report was filed by my NY neurosurgeon with my insurance, I wondered if they'd believe him, or me. It seems they believe me. Thank God.

I will call OHSU tomorrow and see if they'd like me to send the CD of imaging that was done in NY last June. There's a lot of cool imaging there to be seen, CINE MRI (shows the flow of cerebrospinal fluid); 3D CT scans; MRIs and CTs and xrays.

So, it's starting all over now, with me explaining once again my entire situation and how I got to where I am now, and hopefully, I will have a caring physician who will listen to me, who will think wisely and deeply and will honor what I know, what I've experienced, and what I'm dealing with now.

I saw my primary today and we talked about the new NS search. I also talked to him about how much pain I am in. Even though I'm taking the maximum dose of oxycodone that he has prescribed, I am always in pain, and usually, most often, in a LOT of heavy duty pain.

He thought I should try Lyrica, which is an anti-convulsant but has been found to be effective in central nervous system pain such as is found in spinal cord injury. I think I've been reluctant to try it because I've heard what a "weight gainer" it is, but I'm going to try it. Tonight will be my first, small dose.

The other day, I snipped the last gladiola, a graceful, pink one, and brought it in the house, placing it in water in the antique, rose-garden vase I have.

This morning, we had our first snow of the season! Big flakes came down steady for about 30 minutes. A dusting of snow is still hanging around. My nurse told me that she was born and raised here, and has never seen snow this early. Confirming her memory, the Portland weatherman said that this snow certainly did set a new record for early snow. The previous record was snow on Oct. 26, I believe.

Well, I won't stay here long. Pain starts in the back of my head, even tho I recently took a pain pill. This is why I don't post too often, but I think of my readers all the time! I make notes of observation, ideas to post about, but the times comes and goes and the thought seems irrelevant.

Wild turkey and deer abound in our yard each day. The deer must have come up on our little front deck and eaten the pink petunias that were still, hardily blossoming in a big, decorative pot. The other day, a lovely fawn was drinking from the birdbath, melting a hole in the ice with her warm, black nose.

Saturday, October 3, 2009

Central Pain Syndrome

I just thought I'd post here, from the NIH website, the definition of Central Pain Syndrome. Many of the readers here have this, but do not know the name for what they are dealing with.

What is Central Pain Syndrome?
Central pain syndrome is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. This syndrome can be caused by stroke, multiple sclerosis, tumors, epilepsy, brain or spinal cord trauma, or Parkinson's disease.

The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes. Central pain syndrome may affect a large portion of the body or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of the CNS injury or damage.

Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures. Individuals experience one or more types of pain sensations, the most prominent being burning. Mingled with the burning may be sensations of "pins and needles;" pressing, lacerating, or aching pain; and brief, intolerable bursts of sharp pain similar to the pain caused by a dental probe on an exposed nerve.

Individuals may have numbness in the areas affected by the pain. The burning and loss of touch sensations are usually most severe on the distant parts of the body, such as the feet or hands. Central pain syndrome often begins shortly after the causative injury or damage, but may be delayed by months or even years, especially if it is related to post-stroke pain.

Is there any treatment?
Pain medications often provide some reduction of pain, but not complete relief of pain, for those affected by central pain syndrome. Tricyclic antidepressants such as nortriptyline or anticonvulsants such as neurontin (gabapentin) can be useful. Lowering stress levels appears to reduce pain.

What is the prognosis?
Central pain syndrome is not a fatal disorder, but the syndrome causes disabling chronic pain and suffering among the majority of individuals who have it.

Thursday, October 1, 2009

Semantics and Complaints

When doctors write down your symptoms, they list them as "complaints."

They write in their reports: "patient complains of .... "

Yet, as I noted in the last post here, most of us were conditioned by our parents and teachers not to complain.

"Complain" has such a negative connotation. It conjures up whining little kids, crying because big brother took her lollipop!

"Buck up!" "Cowboy up!" I've heard some people say, "Put on your big-girl panties!"

Which is all well and good, serves some useful purposes, I know. But when you are in deep, chronic pain, the kind that emanates from the spinal cord, you perhaps can "buck up, little buckaroo" at home, among your family and friends, but when you are with your doctor, you need to present those "complaints."

I always take a detailed symptom list to a new doctor. I save it on my computer, as well. Since I've been dealing so long with this now, it has proven valuable, as I've been able to tell a doctor, "Look, I reported this swallowing problem five years ago!" (Time does go by fast when you're having fun, they say.)

So....what does a doctor think when he hears the word, "complaint."

He was probably raised the same way we were. And when a patient presents a list of symptoms or tells of a problem, does this doctor instinctively judge the patient before him or her, remembering their own upbringing, perhaps a teacher telling them to stop crying and go back onto the playground and push that bully back?

Does he or she care enough to battle those instincts?

There's a book out called "How Doctors Think" or something like that. I need to get that book. I have a feeling this issue might be in it.

Up north, the old cowboys have a saying.

A horse might run into the corral with the rest of the remuda, but she is limping and presenting with a gaping, bleeding wound.

The crusty, old-timers will often say, "'s a long way from 'er heart!"

Meaning, it's a simple thing not worthy of worrying about. It won't kill her ( how often they've been proved wrong is not known, however).

Who's this for?

Oh, the pain this morning!

It gets me frustrated sometimes that just doing things that are simple ends up with me enduring this all-over, central pain.

I mean, it's not like I'm out riding roller coasters or anything! I wonder how I'd feel if I rented a horse and went for a ride? Couldn't feel worse, I don't think. Don't worry, I am too weak to climb on a horse anyway.

The other day, a fellow "Chiarian" (not to be confused with my fellow "Martians!") came over to spend the night. I enjoyed her visit so much. She stayed about 21 hours, all tolled, and at least 7 hours of that, we were sleeping.

But, oh, all that talking! We had so much to catch up on, it was so needful for us to talk. She has had the craniocervical fusion that I have been expecting to have for so long. But she wants to have her skull rods removed. She says they cause her so much pain.

At one time, she felt very sure her problems, post-fusion, were due to a tethered spinal cord. She considered seeking surgery for it. Since I've had the TC surgery, I am now able to tell her, "I'm so glad that you didn't have this surgery! It didn't resolve any pain issues for me and in fact, I have more pain than ever now."

So, it seems interesting that she had a surgery I have longed for, and she wishes she hadn't had it. And I had a different surgery that she wished for, and...well, I can't say I wish I hadn't. My faith won't let me say that. But I sure couldn't push her toward it!

After her drove from my driveway and I closed the gate at the road, I laid down and suffered so badly for the next 24 hours with pain behind the head. I had tried to keep things low key and not laugh much...I attempted to let her to do more talking than me (very hard, I know!)

Then, yesterday, I went to our shopping town and, yes, I admit it, I dared to walk straight through to Home Depot's paint department and select some paint, and then carried that gallon out to the truck where my husband/driver awaited. How dare I!! Last night...this body is letting me know that I rebelliously had pushed past my pain-inflicted restrictions.

Ah, someone just sent me an email. An old friend, asking for my phone number so that he can call and "catch up." Now, I'm in the position of having to tell him that I just don't "do phones." It's the "talking thing," you see. Though I'd love to visit with him and see how he's doing, I won't.

I posted on the Chiari support group site (where I help moderate) a question concerning others experiencing occipital pain from talking. I was surprised at how many took the time from their hurting days and told me that, yes, this is a common complaint for them.

I know it's been an evolutionary thing. Right after I broke my neck, with a raging spirit straining against the harness to return to "normal," I went back to playing music and singing in a little bluegrass band I was in. Finally, 5 months after my injury and after hosting a little show (and singing/playing), I knew it was my last time on stage.

Such a big thing for me to give up, just like horses. I played mandolin, banjo, rhythm and lead guitar and sang lead and harmony vocals. We mostly sang Gospel music and entertained at churches. But, I found that the singing led to such debilitating pain. I felt like the back of my head was a sound chamber and the act of singing and bouncing those notes around was the reason for the backlash of pain and whole body weakness. I knew, on that September night in California, that I could no longer perform on stage.

I often think of visiting cowboy poetry shows to see old friends. But, first, the talking and laughing would do a number on me. And I'd have to explain over and over why I was not performing. And everyone wouldn't recognize me anyway. Oh, they'd probably know my face, even though I weigh 40 lbs more than the last time they'd seen me. But they would not recognize my outward personality, I suspect.

So, it started with singing...and has now evolved into talking, as well.

I saw my primary doctor the other day, and he is starting the "ball rolling" on getting me a new neurosurgeon at Oregon Health and Sciences University. I already go there to see my endocrinologist, Dr. Madison, who is excellent. My primary feels I need someone to take care of my neck. One of my AMEs (agreed upon medical examiner) also feels I need a specialist. Sounds like when I gave up seeking help, some of these doctors became willing to show compassion and seek help for me.

I don't know if I want surgery or not. It will depend on what the surgeon says. I guess that I have been bashed around by neurosurgical specialists so much lately that I have finally given up hope of being "better." And I sure don't want to go through that and be worse. So, we'll see.

And it will depend upon how I progress or decline as time goes along.

I have received so many emails from folks I don't know, who follow this blog and tell me that they get so much from it, that I give voice to their own pain, frustrations, fears, etc. Those notes really keep me going.

It also helps me because I was taught, like most of us were, not to complain or whine. To put a smile on and face the world. To "not" give a voice to that pain! Cowboy up!!

And that gives me a little guilt about writing here about the pain.

I also think of my friends who come here for updates. And, I feel badly that all they get to read is how bad I feel! But then I've come to the understanding that these posts are for fellow sufferers. And friends and family can read if they wish...if they can stand it (!)....but mainly, this one's for those who suffer with pain every minute,

who have families who do not understand...
who have doctors who belittle them or disbelieve them...
who cling to hope while facing reality....
who question their faith and wonder if they can hold on....
who pray for a doctor that will understand, listen, have new ideas, validate their symptoms...
who wish for normalcy...
who understand what it's like not to be able to call your mom as often as you'd like...
who would never consider suicide and are not depressed,
yet who sometimes look forward to heaven where there is no pain...
who need a friend, a compatriot in this struggle.