Wednesday, January 30, 2008
It is interesting how our psyches can take true physical pain and incorporate it somehow into a dream. The pain was very real and felt as if it came from the piercing fangs of a hungry lion. I had tried to do a little bit extra yesterday and had shoveled snow, lightly, for 15 minutes. Then, I'd walked just across my back yard through six inches of snow. Both activities extremely light-duty...yet the effect was the intense groin pain that developed after I went to sleep and then, brains being what they are, mine used the real sensation as a basis for a very strange dream indeed. I've always dreamed long sagas anyway.
Today, I went for my bone scan and the technician told me that she didn't think my osteopenia is really bad or that I have really brittle bones. I have it...but she didn't think it was terrible. She ran off copies of the data and the report and gave it to me. Arriving home, I dug out my last DEXA in November of 2006. It took me a while to figure out how to compare the results of both tests but after finding a good site online which explained things, I can easily see that I have experienced some improvement in my bone density!
This is a very big thing for a post-menopausal woman. Surely the Actonel I've ingested for four years combined with the six months of super-duper bone enhancing pamidronate have done the job intended, and my bone loss has been reversed. I will know more for certain after I talk to my oncologist on Feb. 11, but I feel sure he will be reporting the same good news. Also, I can see where this is good news for the pre-condition for multiple myeloma that I have. Good, good news. Thank you, Jesus.
I really needed this confidence-boosting report. I need to get my mind on track toward the fusion surgery, the halo, and getting better and getting on with my life.
I was also rereading a letter written by my neurosurgeon to my insurance company, where he mentioned the "spectacular results" of my diagnostic "at home cervical traction" test. That brought back to my remembrance how good I did feel for 45 minutes post traction, practically normal!
God is good!
Goodnight, gentle readers, I hope you can fall asleep tonight with a smile on your face.
But she seemed to think he was gentle and wouldn't harm a fly. Frightened to the bone by the look in his golden eyes which spoke of far too much interest in ME, I begged her to chain him up someplace. She ignored my pleas and the big cat moved closer to me, acting friendly but I knew where his interests lay.
After rubbing up against my legs, pushing in a way that threatened to topple me (I only held myself up through sheer will and the fear of what this monster would do if I fell helplessly to the floor), in one flash of movement his head turned toward me, his mouth opened and he had me. One mighty canine tooth went through my right hip, at the upper inside thigh, and the pain was excrutiating. I felt the puncture in the front, and also at the back, not pulsing pain as if he were chewing, but steady pain because he was, indeed, holding on as if afraid I might find release and run.
Eventually, he did let me go, but the pain was still there. I called to my mother in the house, but, even though she heard me and called something back in reply, she didn't come. The lion still prowled about and I attempted to become invisible, trying not to attract his evil attention.
I tried climbing trees to hide from him, the pain compounded by every movement, but came to the realisation that anything I could possibly climb, so could he. I could see him out there in the shadows of the forest, watching me and I tried to hide. Yet I could not escape him nor the pain his predatory teeth had caused.
Eventually, back with my family, the old cat seemed to soften and though my pain still brought tears to my eyes, I often found myself petting the scarred head of the beast, noticing his ribs under the dull and lifeless fur. I'd watched enough National Geographic Channel to know what had been going on: unable to catch normal prey, the aging campaigner tried to capture dinner from the slowest of the slow, ME!
My pain still centered at the hip and groin area and never lessened, only intensified, yet I came to understand it wasn't the lion's fault, he'd only acted upon his instincts for survival. Finally, healthy lions started lurking about and, happy for the companionship of his own kind, the old boy went out with them one day.
My stepfather, who had survived the attack earlier, and I found the skinny carcass of the big cat stretched out in the sun at the mouth of a deep cave.
At this time, I awoke from my dream and, though the images of blood and hungry beasts were gone, the pain was real and deep. I got up and experienced a pain so intense it brought tears to my eyes. Thus, I sit at 3 am and type it all out as it occurred.
Bless those lions who lurk in the shadows of our dreams and inflict such deep and horrifying hurts. They gnaw upon our psyches, but give us real images in which to express our pain.
Tuesday, January 29, 2008
I live with doubt. I know that the converse of doubt is faith, trust or confidence. Thus, my doubt is truly a lack of faith.
"Lord I believe! Help thou me with my unbelief." Thomas told this to Jesus and I know exactly what he meant. "Help me to believe what I know to be true. That you will take care of everything. I believe in You, but help me not to doubt about the future."
Haunted by questions and doubts about the craniocervical fusion, I spend each day going back and forth on why I should have confidence about it. I know I need it. But, yes, I worry about feeling worse after the surgery.
I need to list the reasons that I need to go forward with confidence:
1) I am not going to get any better.
2) And my lifestyle now is really one of doing very little, and when I do anything, there is no fun or enjoyment in it because I immediately pay the price.
3) My son told me that I needed to go for this because if I were to get into an auto accident, I would be much safer. I need to do this for him.
4) The world-famous neurosurgeon who did my cord detethering told my sister that if I decide to go back for the fusion, they can help me "alot." "She may even be able to ride again," he said.
5) A princely sum was paid by my insurance for the pamidronate treatments, to strengthen my bones for the surgery.
6)I have, if God wills it, another 30 to 35 years to live and I don't want to live in this condition.
7) Most of all, the Lord promised me that He cared for me, and that all things work together for good "to them who love God and the called according to His purpose."
8) My husband deserves to have a more healthy partner with whom to enjoy his retirement years, and also to take care of him as he ages.
9) It is miraculous that I am alive, and it was miraculous that I was led to exactly the surgeons (3000 miles away) who knew what to do to help me. It's miraculous that my work comp insurance has approved me to have treatment there. The Hand of Almighty God is evident, and I need to suck it up and move forward with courage that God has prepared the way for me.
10) The tethered cord surgery I just had was only stage one in a two step surgical plan.
It's good to have free will...to have that ability to choose. And, sometimes, it means choosing to believe God, take Him at His promising Word as opposed to living in fear and doubt.
It's all akin to a scared Spring lamb cowering within a dark trailer. The door is open to green pasture and streams of water rolling through waving stands of grass. Shady trees dot the landscape and puffy clouds skim across the sky from time to time. Birds sing from the branches of tall pines.
The lamb stands shakily inside the dark trailer. The air inside reeks of manure and urine, and the lamb is hungry, so hungry her insides hurt and she is weak beyond compare. The rancher beckons her forward to the fields of green, but she is fearful because she can't see those fields and all she knows is the dank insides of the stock trailer.
I am that lamb and I need to jump out into the sunshine with faith and courage that God has set this all up in His divine plan.
Friday, January 25, 2008
And working with the dog satisfied the horse-trainer so firmly ingrained in me.
I also washed the kitchen floor.
In spite of taking very careful, baby steps on my little walk and moving slowly while mopping, I am paying the fiddler again. Frequent urination, burning calves and feet, painful feet when walking, lumbar pain.
Wednesday, January 23, 2008
While reading in the middle of last night, I came upon a couple of quotes that I really liked and wanted to share with my readers. One is written as the words from Agent Erin McCoy, as a response to a question from the main character, Jon Bennett. Faced with the very real threat of nuclear war, Bennett notices that McCoy is not as fearful as he. He asks her why, and she explains how she was raised as a child, by a faith-filled mother. Later, as an adult, McCoy's mother was stricken with terminal cancer and Erin helped her to plan her own funeral. The mother told her that she wanted to be laid "out in an open casket with a fork in her hand."
"A fork? Why a fork? And she says, 'When I was a little girl, I used to love church suppers. And when the meal was done, and people were clearing the dishes, one of the older women in the church would always come over and lean down and whisper to me, save your fork. And I loved that. Because I knew it meant something better was coming--apple pie or chocolate cake or blueberry cobbler, or something. And pastor,' she said, 'when I die, I want people to come by and see me and then ask you, Why's she got a fork in her hand? And I want you to tell them my little story, and then tell them the good news--that when you know Christ, you know there's something better coming. There's something better coming.' "
The next quote was attributed to Vaclav Havel, first president of the Czech Republic, and reads: "The real test of a man is not when he plays the role that he wants for himself, but when he plays the role destiny has for him."
Tuesday, January 22, 2008
I am always intrigued by how many land on this site after searching in their web browsers for "Jefferson Fracture" or "C1 fracture" etc.
I would be willing to start a message board for those of us who are dealing with C1 fractures or even other skull base/trauma issues (not Chiari, as there are plenty of message boards for that condition) if some of you browser-types would leave me a message here that you would be interested.
So, just reply to this message as a comment (you can do so anonymously) and I'll bump this up to the top once in awhile, and if there is enough interest, we'll give it a try. As far as I know, there is no message board specifically for Jefferson fractures, yet so many are finding this site while searching for JF information online.
Just let me know what you think, if you'd be interested in being involved with such a message board/support group.
take care, gentle readers!
Monday, January 21, 2008
One day last week, I felt good enough on a nice day to walk the dog across the road. We were gone 15 minutes, but I really suffered from that activity. We went to town a few times (I haven't driven since last February when I started wearing an Aspen collar or a CTO vest in the truck. I miss it so much and really do want to get back into driving, but also question whether my weak legs would be able to negotiate the brake and clutch) and each time, I was overcome with such painful exhaustion.
I keep reminding myself that this is good.
Yes, good! Because I know without a doubt I need to go get the fusion surgery done. The way things are going is just not acceptable.
Our neighbors stopped by the other day and the wife seemed to be questioning me on whether I really needed to return for the 2nd surgery. I told them, "I am 55 years old. I perhaps have 30 more years. If I have to suffer for one year in order to have a quality 29, then the trade-off is worth it. Not only worth it, but necessary. I want some semblance of a life again. I want to go see a play in town, or travel south to see our son. Go hiking or out on our little fishing boat."
One day, we stopped to visit some folks in town who own and operate a farm business. The wife asked me what I do all day, if I can't work. It was hard for me to explain and I gave up quickly. I keep very busy all day at home, though often I stop and lie down, read some or nap. But there are a lot of little things I can do which take up the hours in a day and make time pass quickly enough.
So, you see, my days don't seem worth writing about right now, unless it's to mention I changed the empty roll of toilet paper! But I'm doing okay, and my attitude and emotional status are good. I thank God for that!
I am reading "The Last Jihad." It was written in 2002, a fictional book which takes place in 2011. Even though the unintended prophecy in the book will not be fulfilled completely (I know this because of events that have taken place since the writing), it's still a fun and interesting read. I also have the sequel to this book, called "The Last Days."
Yesterday, my husband installed a new toilet in our house. I told you our lives are very avant garde and exciting! I was helping by handing him screwdrivers and getting him other tools as needed. It took about an hour and there were times when things didn't go precisely right and a certain amount of prerequisite cussing occurred. My central nervous system went into a tail spine from standing up that long...feeling a tad bit tense...keeping up the focus in order to hand the correct tools, etc. I started feeling that painful, electrical tingling down deep inside and I became very weak. The back of my head/top of my neck started with stabbing pains and my hands started that flu-like feeling. It frustrates me that I can't even do something so simple...yet again, I tell myself, this is good. Because of these things happening, I have no doubt what I must do.
So, I'm waiting for the bone density scan on Jan. 30 and then the appointment with my hematologist/oncologist. THEN, hopefully, I can schedule my fusion, which I am guessing at that point will put the surgery at about mid-March.
I feel that my neck instability is worse since the detethering, but that doesn't phase me because I knew all along the tethered cord surgery was stage one of a two part surgical plan.
Monday, January 14, 2008
Saturday was bright and sunny and I walked up the hill of our property to the back fence. Not that far, but it is a little steep. There was still about 4" of mushy snow on the ground and I took Quincy with me so he could snoop around the brushy piles of branches and under the oaks where the deer often lay at night. Taking small, trudging steps and avoiding the position of lifting my legs up and over things, even snow, I made the trip and reveled in the view from up there. It "would" be nice to have 3 flat acres, but then we wouldn't have such a lovely view of the mountains to the north, the highway pass to the northeast which follows an old Indian trail, and then to the east, the beginnings of a prairie. I noticed I can see glimpses over there of some far off "wind farms."
In the throes of feeling pretty good, I promised myself I'd climb up there often in an effort to build muscle and lose weight. Sunday, I made good on my promise and enjoyed another 15 minute "hike."
Last night, prompted by some words from a friend, I got to wondering about something that was told to me a couple of years ago. I wrote my friend yesterday that because I have spinal cord injury, I cannot build muscle. That was what an RN told me back when.
My friend often challenges my thinking and asked if I knew where to find a medical article validating that statement. She mentioned how it didn't seem to make sense since paraplegics in wheelchairs become athletes with amazing upper body strength.
I couldn't answer that subtle challenge because I have already searched and searched, only to come up empty-handed.
I chewed on that late at night, and then this morning, I came to the realization that I've always known what was meant by that nurse and her statement. I just forget what I know sometimes.
It isn't that muscle won't increase for SCI patients. It's that exercise will cause such flare-ups in symptoms that some SCI patients (like me) won't be able to even start to keep it up! I have found this to be completely true in my experience. Today, I could feel a strong flare in neurological sensations and pain and extreme weakness in all parts of my legs. I did not walk up the hill today.
Perhaps there is also something physiologically different between "complete" spinal cord injury victims and "incomplete," which is what I have. Perhaps with the "complete," the terrible damage is done and there is no further compression that is exacerbated by certain exercise.
To explore this theory further, I can explain with the example of a paraplegic who has use of her arms, but not her legs. Her injury was further down the spine, but above her spine is relatively okay. The awful compression in her lower spine is irreversible and no futher damage can be done. She is numb below the waist. But her upper body has no compression problems. Perhaps she can work out and lift weights without causing neurological compression and subsequent flares.
It is well known that anything below a spinal cord injury injury is affected, while above it should be okay. Mine happened at the skull base, so I have the entire spine still affected by daily compression caused by movement. Does this make sense?
Perhaps when my skull base is stabilized, I will be able to build muscle, takes walks, ride a bike, do repetitive movements without paying the central nervous system fiddler.
It's true, I am someone who loves to learn the circuitry of things. "That's just the way it is" rarely is accepted by me. That's the investigative journalist in me, I guess. "Enquiring" minds want to know!
Friday, January 11, 2008
The staff there is wonderful, many of them are Christians. I asked Penny, who started the IV, to take my photo for my blog. She said she'd never been asked to take a photo there before!
Starting the IV was the most painful I've ever had. I've had SO many IVs in the last 8 months and it started getting to the point that all nurses were having trouble finding the vein. Penny tried inside my left wrist where the vein was very pronounced, but she didn't get any blood to come out, so she poked it around looking to puncture the vein. That hurt so badly, just burned. She pulled it out and decided to try on the top of my wrist, a new place for me, and it hurt like heck too, but she got the job done. She said she felt my nerves were right close to the veins and she was poking them and that was why it hurt.
I visited with a few nurses as they passed my cubicle. This is a cancer center where most people are receiving chemo. The nurses are the most caring and respectful of anywhere I've been. Odd to say, but I'll miss them.
Next, a bone density scan scheduled for Jan. 30, then an appointment with my hematologist/oncologist on Feb. 11. Sometime before I see him, I need to go in and have my blood drawn for my protein levels to be checked (for the pre-cancerous condition I have). When those things are all done and checked off and my hematologist says it looks favorable to go for the fusion surgery in NY, I will then get on the schedule.
Blessings, gentle reader
Tuesday, January 8, 2008
Sunday, January 6, 2008
It seems like this weekend, the "neuro-buzzing" pain that seems to emanate from my central core (the surgery site) came back in semi-full force. I've gone back to taking the stronger pain meds in order to keep that all under control, and also to help with the occipital pain.
I wanted to update this and record it correctly because I know there are several readers who are considering going to TCI for the Tethered Cord Surgery and I want to be honest about what I'm going through. I still sense many benefits, but as I've written before, it was the first of a two part surgical treatment and I need to get stronger and have the fusion done before I will experience the full benefit.
And also keep in mind that my tethered cord was an extreme situation (according to the surgeons, and if the length of the surgery was any indication) so perhaps it will take longer for me to get through the recovery. Those I've talked to who have already had the TC surgery do not report having had the deep, painful, buzzing that I had and still experience.
But I'm still doing okay. Night time is the worst and going to bed and sleeping through until morning (with a trip or two to the bathroom) seems like a distant memory.
I'll just keep puttin' that one foot in front of the other, and lettin' you know how it goes.
Friday, January 4, 2008
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!
Aces! I feel like aces!
Know what I was doing when I came upon that thought? Um....sitting in the recliner after having taken a narcotic pain medication (but waiting for it to "take") and holding an iced gel pak firmly to the back of my head.
I guess it's true: everything IS relative!
I have been feeling quite well. I seem to have turned some sort of corner in my recovery from the tethered cord surgery. I feel freer in my back and hips. I cut back on caffeine and that helped a lot with the burning I experienced when I'd wake up in the middle of the night. My legs are still weak and my calves spasm a little bit. But I am not feeling that deep, central core type of pain and tingling from all the work done while sectioning my "filum."
But...I'm having more of the occipital pain, especially on the right side of the back of my skull. When it comes on, it is a strong ache in a localized area, which is punctuated by the occasional fiery streak of a stronger pain shooting down through the area already aching. I would never call this a headache. I don't know if others call this sort of pain a headache, but I never would. Not that I'm saying that it's worse than a headache, but the location is what keeps it from falling into that category.
I figure I'm like most folks. When you have a diagnosis and something is wrong and you have chronic pain, you wonder why exactly it hurts. I wonder why that hurts behind my skull like that. Oh, of course I know the general answers: my skull rotated backwards and rests upon the back of my C1. My C1 is non-fused with a big gap between the ends of the bones. I suffered internal decapitation and my skull fused in the wrong place. But...still I wonder why exactly this particular pain is sticking with me.
I am remembering again that Dr. M told me that I have an acquired "chiari" and that there might be some obstruction of flow. Does this cause this occipital pain?
It's really a rhetorical question because even the big neurosurgeons won't know until they open you up and then they still may not know. But it's still a question that bounces around within my grey matter. Until the pain med kicks in anyway.
But still, I'm doing aces! I really am. I'm still taking things VERY easy. I'm avoiding bending over and lifting. I'm following all the rules. I'm doing the log roll to get into and out of bed, and doing a similar version to get in and out of the truck. But I feel, once again, that the surgery was very successful and in another month or so, I'm gonna be better'n ACES!
I'd love to have a new MRI of my skull and Cspine and see that sagittal view and see if my brainstem and cerebellum have ascended any since the detethering/cord release. I don't know how long it takes for that benefit to show up, if it does. I know I'll get to have that MRI done and hear/see the results when I go for my follow-up in NY in a couple of months.
It rained all night and most of our snow is gone. Today was at least 50 degrees and a lot of sun. We drove downriver for a doctor appointment and the Columbia Gorge was, as ever, incredibly scenic. We were both overcome with a feeling of divine blessing. To have God's blessing over your life is a miraculous and wondrous thing, isn't it.
Next week, on the 7th, I'll go to the cancer center for my last pamidronate treatment (for now). Then, I'll schedule a bone density test and send the results to NY, and then, hopefully, schedule the surgery. With this pain in the back of my head, I know I need to go forward with the fusion. This will only get worse.
And I'm also feeling confident that the next surgery won't be near as bad as the last because, for one thing, I've been there and I know some of the routine. That's going to make a big difference for me. I'm feeling feisty and ready to take on the battle.
God bless you, gentle reader.