It's taken me a bit to get on here and get my blog up to date on what happened at the neurosurgeon's appointment....so here goes:
The minute I walked into the tall, tall building that houses the medical offices of OHSU (Oregon Health and Sciences University), I felt "right" somehow. It had to be a "God-thing" because I had a couple of tough experiences there a couple of years ago...but nope, everything was going well.
My neurosurgeon was on time, and when I and my husband went in, I was first interviewed by the kind physician's assistant who had interviewed me before, when I first visited that office in 2009. She visits with you, and then goes back to the surgeon and tells him all about what is wanted, expected, etc, so that he can be ready when he walks in. I had told her that I was ready to put it all into the surgeon's hands: if he says yes to a surgery, I will make a decision on the spot to have it done. If he says no, I'll walk out and not seek surgery again.
Therefore, it was not a surprise when he walked into the exam room and got right to the point: yes, you still need surgery and so, first, we'll get new imaging, and once that is done, I will go back to see him and we'll discuss if surgery is still the right thing to do. He wants to just fuse the C1 and C2. I asked him if he'd fuse to the occiput (skull base) and he answered that he prefers not to unless it's very necessary. He said that when he gets into the surgery, at a certain point, he can check it all to see if there is movement where there shouldn't be, and if so, then he'd fuse to the skull base.
My feelings about it are that I prefer he does go ahead and fuse the skull base, but I trust his judgment. I also feel that the fusion of C1 to C2 is certainly warranted since the last MRI where the radiologist reported movement of the C1 to the left, which is not good.
He was soooo nice, and said a few times that I will do really well with this surgery, that he will be helping me a lot, that alot of my symptoms will resolve. I am so happy!
So, right now, I'm waiting for my workers comp insurance to give the go-ahead to have the surgery, and then I can move ahead with the new xray; new MRI (regular) and then the SPEC scan which is an MRI done after a radioactive substance is injected into my veins. He said he was really liking his experiences with the SPEC. I had it last time and no problems.
I'm very excited about this. First of all, as soon as he spoke his words, I got misty-eyed, and tears came from my eyes. I realized as I went home that there was something HUGELY different in my life. Something felt so very changed to how I felt from the time I broke my neck, 7.5 years ago, until the surgeon spoke those words a couple of weeks ago. On the way home, it hit me what it was. HOPE. I have hope, something I have not had for many years. This surgery, believe it or not, will be the FIRST surgery ever that I will have had on the C1/skull base area, since I shattered it all April 9, 2004! The surgeon said it was high time someone helped me out. Lord, please bless this wonderful man!
All of your prayers were felt, believe me. The surgeon was like a new man, completely different from how he was 2 yrs ago. There was a sense of JOY in the exam room, when the center of attention, ME, was infused with happiness and joy that I would finally get stability at the craniocervical junction! The PA was laughing and happy; my husband was cracking jokes, per usual; the surgeon was joyful and tears were streaming down the cheeks of my face as that single emotion, HOPE, which had been missing for so many years, took up residence in my brain.
Thank you for everything and I will keep you posted.
Wednesday, December 7, 2011
Thursday, November 24, 2011
The Bottom Line
I finally found it! I've been praying and asking the Lord to reveal to
me what I can say to the neurosurgeon.
You see, I know them well enough to know that they want things concise.
They want the bottom line and they don't want to hear all about your various symptoms.
But, I just didn't have it, that concise message that adds it all up. Because I know he will ask me, "Why do you want surgery now?"
I suppose this might sound foolish to many. Why worry about something like this? Why let it eat away at you and keep you awake at night?
You see, when you have a brain injury, you worry that things will be asked of you, IMPORTANT things, that will need an answer. I do, I worry about it. Especially when it's concerning something really important to me!
I feel like I can relax when I have the right words down on paper. Because I have had the experience of not explaining myself well, and the neurosurgeon was in a hurry and he didn't want to wait for me to collect my thoughts!
His time is worth money and he exudes the air that tells me he has much more important stuff to do than wait for me to explain myself.
Well, whether the reader understands this or not, it is what I often wrestle with, but now, on a piece of paper in my kitchen, scribbled out in pencil, is "the Bottom Line!" I am 3 days away from seeing the neurosurgeon, and thank You, Jesus, You've given me the words I feel will work when I'm asked why I feel surgery will be good for me.
This is what I wrote:
The Bottom Line
I cannot keep myself from living Life.
I cannot keep myself from doing things, even small things, that I know will later on cause me a lot of pain and suffering.
I also cannot stay out of a car or pickup. Life really demands that I go shopping or to doctor appointments and other
things that require a ride in a car. I gave up driving long ago.
I honestly think a stabilization will help my problems with riding in a vehicle. The wobbling about, the motion of travel, will have less effect on me if I have a stabilization done at the cranio-cervical junction. I might even be able to drive again!
And I'll be safer in the vehicle with that surgery done, those rods and screws and plates and wires in place. In the event of a motor vehicle accident, I will have more to hold my head onto my spine!
AND, I believe that surgery will cause me to have less range of motion, which is just what I want. I believe that if my neck is held rock-solid, then I will not be apt to do those things that I do now, the things that cause neurological flareups. I will be more aware of not wanting to lift something heavy or turn in such a way that will cause anything to twist, turn or pop out of position.
These things are the bottom line. I truly believe, given my own awareness of my own situation, that a top-notch stabilization will finally put me into the right place, and keep me there.
finis
me what I can say to the neurosurgeon.
You see, I know them well enough to know that they want things concise.
They want the bottom line and they don't want to hear all about your various symptoms.
But, I just didn't have it, that concise message that adds it all up. Because I know he will ask me, "Why do you want surgery now?"
I suppose this might sound foolish to many. Why worry about something like this? Why let it eat away at you and keep you awake at night?
You see, when you have a brain injury, you worry that things will be asked of you, IMPORTANT things, that will need an answer. I do, I worry about it. Especially when it's concerning something really important to me!
I feel like I can relax when I have the right words down on paper. Because I have had the experience of not explaining myself well, and the neurosurgeon was in a hurry and he didn't want to wait for me to collect my thoughts!
His time is worth money and he exudes the air that tells me he has much more important stuff to do than wait for me to explain myself.
Well, whether the reader understands this or not, it is what I often wrestle with, but now, on a piece of paper in my kitchen, scribbled out in pencil, is "the Bottom Line!" I am 3 days away from seeing the neurosurgeon, and thank You, Jesus, You've given me the words I feel will work when I'm asked why I feel surgery will be good for me.
This is what I wrote:
The Bottom Line
I cannot keep myself from living Life.
I cannot keep myself from doing things, even small things, that I know will later on cause me a lot of pain and suffering.
I also cannot stay out of a car or pickup. Life really demands that I go shopping or to doctor appointments and other
things that require a ride in a car. I gave up driving long ago.
I honestly think a stabilization will help my problems with riding in a vehicle. The wobbling about, the motion of travel, will have less effect on me if I have a stabilization done at the cranio-cervical junction. I might even be able to drive again!
And I'll be safer in the vehicle with that surgery done, those rods and screws and plates and wires in place. In the event of a motor vehicle accident, I will have more to hold my head onto my spine!
AND, I believe that surgery will cause me to have less range of motion, which is just what I want. I believe that if my neck is held rock-solid, then I will not be apt to do those things that I do now, the things that cause neurological flareups. I will be more aware of not wanting to lift something heavy or turn in such a way that will cause anything to twist, turn or pop out of position.
These things are the bottom line. I truly believe, given my own awareness of my own situation, that a top-notch stabilization will finally put me into the right place, and keep me there.
finis
A couple nights ago...
I am feeling so sick. It's the nausea I get from the pressure on my upper spinal cord, ie my brainstem. It's a "dry" nausea, I can have dry heaves and nothing comes of it. But the nausea comes every day and sometimes sticks around for hours.
Last night, I did a very, very bad thing!! I sanded down my dogs' toenails. I hold them on my lap and do the job with an electric moto-tool.
You see, I'm not wired to find reasons not to do something. I'm hard-wired to find a way to do it even if I'm sick. That was the way I was all of my life. Now, you can see only a faint shadow of the person I used to be. My weakness and the pain that wracks my body just puts a huge block wall in my way. It's been a long, long time since I've been able to really work hard, but each day, as I find a way to get through it, I look for that special, rare moment when there's a millimeter of strength to achieve something. That's all I hope for, each day, is some oomph that will allow me to do something that I really want to see done.
I can't afford a house cleaner or a yard worker and really can't afford to pay a vet to do my dogs' nails. But...I'm their owner and it is my responsibility to keep them healthy. So, last night, I felt pretty good, so I did their nails. I knew, knew well, that doing something that keeps my chin on my chest will produce some nasty symptoms soon to follow. I would think I'd weigh the known payback and simply not do it! But, I'm just hard-wired to do something if there's any chance in the world that I can do it. Which is not necessarily a quality...
So, tonight, after a day that saw me spending 3.5 hours in bed, due to painful weakness, I have been overwhelmed with the nausea. Pain at the back of the head...but also this wicked nausea. Ginger drops help but not tonight. I've taken a handful of tums, I drank 2 small glasses of milk, I ate a half a piece of bread with peanut butter, which often helps. But not tonight. I laid down in the dark...just took another oxycodone for the head pain...
and through all of this it seems silly that I still wrestle with the question that haunts me day and night: if the neurosurgeon offers me a surgery like he did last time, should I take it? I guess it wouldn't be a question so much if this neurosurgeon had not told me before, "You could die from this surgery."
Last night, I did a very, very bad thing!! I sanded down my dogs' toenails. I hold them on my lap and do the job with an electric moto-tool.
You see, I'm not wired to find reasons not to do something. I'm hard-wired to find a way to do it even if I'm sick. That was the way I was all of my life. Now, you can see only a faint shadow of the person I used to be. My weakness and the pain that wracks my body just puts a huge block wall in my way. It's been a long, long time since I've been able to really work hard, but each day, as I find a way to get through it, I look for that special, rare moment when there's a millimeter of strength to achieve something. That's all I hope for, each day, is some oomph that will allow me to do something that I really want to see done.
I can't afford a house cleaner or a yard worker and really can't afford to pay a vet to do my dogs' nails. But...I'm their owner and it is my responsibility to keep them healthy. So, last night, I felt pretty good, so I did their nails. I knew, knew well, that doing something that keeps my chin on my chest will produce some nasty symptoms soon to follow. I would think I'd weigh the known payback and simply not do it! But, I'm just hard-wired to do something if there's any chance in the world that I can do it. Which is not necessarily a quality...
So, tonight, after a day that saw me spending 3.5 hours in bed, due to painful weakness, I have been overwhelmed with the nausea. Pain at the back of the head...but also this wicked nausea. Ginger drops help but not tonight. I've taken a handful of tums, I drank 2 small glasses of milk, I ate a half a piece of bread with peanut butter, which often helps. But not tonight. I laid down in the dark...just took another oxycodone for the head pain...
and through all of this it seems silly that I still wrestle with the question that haunts me day and night: if the neurosurgeon offers me a surgery like he did last time, should I take it? I guess it wouldn't be a question so much if this neurosurgeon had not told me before, "You could die from this surgery."
Sunday, November 13, 2011
She said the word, "safer!"
Another step on the slow, long road...
Yesterday, I received in the mail the authorization to visit my neurosurgeon in Portland, Oregon, at OHSU. The next step is to get an appointment there, and "cowboy up" and go see him. I suspect he will first order new imaging, since the last imaging I had there is now over 1.5 years old. After those are done, then I expect to go see the good doctor. At least that is the way I remember it went before, over a few months in early 2010.
I've tried to explain for the reader my feelings about surgery. How I realize now that I have been afraid of surgery, and without knowing that, I've avoided it. The other thing that happens is my mind wavers hot and cold about surgery. I can't seem to keep it on one track. One moment, I am sure 100% of the reasons I need surgery and I want to go in right that moment.
However, another day, I think about not taking any risks and about going with the evil I know, ie no surgery.
I have come to also realize that a person can have constant central pain and pretty much get used to it. Unless I'm late taking the pain meds...or the pain is worse than even it is normally. But...my observance is that a person can become accustomed to Pain.
So, today, I went to the pharmacy to pick up my meds. Usually, my pain meds run out at different times in the month and it seems like I'm going once a week to pick up a refill. But, this month, they all fell on the same time of needing refilling, so there I was, picking up six bottles of pills. The young man at the pharmacy joked with me, saying, "I have to give you the BIG bag for all your meds!"
As I checked out in the front with something else I'd bought, the girl noticed my neck brace and asked, "Oh, dear, you hurt your neck! What happened?"
I am SO used to hearing this from strangers. Every time I go to town, in fact. So, to her, I answered, "Oh, I just broke it a long time ago. I've been thinking of going for surgery though."
And this girl said, "You mean with screws and wire?"
and that was an unusual question she asked, not one I'm used to hearing, so I looked at her more closely, smiled and said, "Yes!"
She said, "I think you'd be a lot safer."
Why would she say that? She knew no details of my situation. Why would she say something so knowledgeable and personal?
I believe that there are angels around us, and God uses them to give messages to us.
In the Bible, there are several examples of strange ways God gave messages to His people. A prophet once picked up the jawbone of an ass and it spoke and delivered the prophecy to the people. The Bible also tells us, "Jesus Christ, the same yesterday, today and forever." God is the same God as He was back then.
I smiled at this young lady and sort of said, "Wow." Then I told her how much that meant to me. She said, "I don't know why, it's just what came to my mind."
Safer...that word means a lot to me because I heard my son say this to me once, and I never could forget it.
It was about four years ago, and I was ready to go for the fusion surgery, the very one I am still seeking, and I was talking on the phone to my son. He said that he felt I should get the fusion because it would make me safer were I to experience a car accident. It made a lot of common sense to me.
As the reader knows, I never did get that fusion due to some political stuff going on at the hospital. I've left all of that behind now. But it does seem like warnings about car accidents have been sent to me upon several occasions.
Dr. Bolognese in NY told me once that I would die if I were in an MVA (motor vehicle accident) and had not had the fusion.
My son told me he felt I'd be safer in the case of a MVA.
The neurosurgeon in Portland wrote in his report to my primary care doctor that there is a "risk of catastrophic failure of the C1 in the event of a car accident."
Hmmm. I wear the neck brace almost always while in a vehicle. But it is not something I worry about.
I've again been in the throes of inner debate about a surgery and this sweet checker at Rite Aid told me out of the blue that I'd be safer if I got the fusion surgery.
Wow...
it might be coincidence. But I've been asking God to tell me more directly if I am supposed to get the surgery. And then this woman said such a simple, yet strange, response to my mentioning surgery.
It feels good to me. I'm going to chew on it for awhile, but right now, those words have made me feel more confident about getting the appointment in Portland.
I'll keep you posted.
Yesterday, I received in the mail the authorization to visit my neurosurgeon in Portland, Oregon, at OHSU. The next step is to get an appointment there, and "cowboy up" and go see him. I suspect he will first order new imaging, since the last imaging I had there is now over 1.5 years old. After those are done, then I expect to go see the good doctor. At least that is the way I remember it went before, over a few months in early 2010.
I've tried to explain for the reader my feelings about surgery. How I realize now that I have been afraid of surgery, and without knowing that, I've avoided it. The other thing that happens is my mind wavers hot and cold about surgery. I can't seem to keep it on one track. One moment, I am sure 100% of the reasons I need surgery and I want to go in right that moment.
However, another day, I think about not taking any risks and about going with the evil I know, ie no surgery.
I have come to also realize that a person can have constant central pain and pretty much get used to it. Unless I'm late taking the pain meds...or the pain is worse than even it is normally. But...my observance is that a person can become accustomed to Pain.
So, today, I went to the pharmacy to pick up my meds. Usually, my pain meds run out at different times in the month and it seems like I'm going once a week to pick up a refill. But, this month, they all fell on the same time of needing refilling, so there I was, picking up six bottles of pills. The young man at the pharmacy joked with me, saying, "I have to give you the BIG bag for all your meds!"
As I checked out in the front with something else I'd bought, the girl noticed my neck brace and asked, "Oh, dear, you hurt your neck! What happened?"
I am SO used to hearing this from strangers. Every time I go to town, in fact. So, to her, I answered, "Oh, I just broke it a long time ago. I've been thinking of going for surgery though."
And this girl said, "You mean with screws and wire?"
and that was an unusual question she asked, not one I'm used to hearing, so I looked at her more closely, smiled and said, "Yes!"
She said, "I think you'd be a lot safer."
Why would she say that? She knew no details of my situation. Why would she say something so knowledgeable and personal?
I believe that there are angels around us, and God uses them to give messages to us.
In the Bible, there are several examples of strange ways God gave messages to His people. A prophet once picked up the jawbone of an ass and it spoke and delivered the prophecy to the people. The Bible also tells us, "Jesus Christ, the same yesterday, today and forever." God is the same God as He was back then.
I smiled at this young lady and sort of said, "Wow." Then I told her how much that meant to me. She said, "I don't know why, it's just what came to my mind."
Safer...that word means a lot to me because I heard my son say this to me once, and I never could forget it.
It was about four years ago, and I was ready to go for the fusion surgery, the very one I am still seeking, and I was talking on the phone to my son. He said that he felt I should get the fusion because it would make me safer were I to experience a car accident. It made a lot of common sense to me.
As the reader knows, I never did get that fusion due to some political stuff going on at the hospital. I've left all of that behind now. But it does seem like warnings about car accidents have been sent to me upon several occasions.
Dr. Bolognese in NY told me once that I would die if I were in an MVA (motor vehicle accident) and had not had the fusion.
My son told me he felt I'd be safer in the case of a MVA.
The neurosurgeon in Portland wrote in his report to my primary care doctor that there is a "risk of catastrophic failure of the C1 in the event of a car accident."
Hmmm. I wear the neck brace almost always while in a vehicle. But it is not something I worry about.
I've again been in the throes of inner debate about a surgery and this sweet checker at Rite Aid told me out of the blue that I'd be safer if I got the fusion surgery.
Wow...
it might be coincidence. But I've been asking God to tell me more directly if I am supposed to get the surgery. And then this woman said such a simple, yet strange, response to my mentioning surgery.
It feels good to me. I'm going to chew on it for awhile, but right now, those words have made me feel more confident about getting the appointment in Portland.
I'll keep you posted.
Tuesday, November 1, 2011
Catchin' up!
Okay, twice I typed out long posts and twice, when I hit the "submit" button, the messages were erased and lost and just plain GONE. It's frustrating!
I finally did, this morning, what I should have done all along: type, first, the post on a Word doc and then paste it onto the blog text box. So, here is what is going on in the neurological world of Virginia...
Ponderings about surgery, Sunday, Oct. 23, 2011
I have become "used to" the fact that my arms and hands are weak, and that goes for the rest of my symptoms, too. The symptoms are not mere nuisances, they point toward the progression of residual pains and signs that were left to me after my injury 7.5 years ago.
This morning, as I brushed my teeth, I thought about the times, at night, that I forego brushing, because I feel too weak to wield a toothbrush. And I noticed the painful weakness in my arms after brushing my teeth and a couple of quick swipes with a comb through my self-cut hair. My arms hurt and are so weak. This is definitely a progression.
Another one I can think of right now is the distinct feeling I get each day of my head, all 12 lbs of it, being too heavy for me to hold up any longer, and I seek out someplace, any place, to lie down and take away that stacked weight upon my spine and neck. Each day, I lie down for 2 hours or more, and the sensation of relieving that weight (of my head) produces often a euphoric reaction. An uncontrollable "AH" of sweet release.
[This reminds me of the "invasive cervical traction" I had done in NY several years ago. I've written about it all back when it was done, in November of 2007, but the procedure went thusly: They put you out for a few minutes while they put a halo on you, with the 4 screws going into your skull (through the skin); Then, they wake you up and sit you up in bed, and hook the counter balance weights onto the top of the halo, so they can pick you up by the halo. Then, they start stacking weight and asking if you can handle more, or if you reach a point of euphoria. And most people DO experience euphoria when that weight is removed. My husband's cousin in NY described this procedure as "draconian," and I would definitely agree!
I sat up in that position with the counter balance of 50 lbs holding me for an hour or so, while a CT machine went around me taking pictures and then several specialists pored over the resulting imaging on computer monitors nearby. When they had reached their conclusions, one of which was seeing for the first time that not only had I broken my C1 into 4 pieces, but I also had suffered Atlanto Occipital Dislocation (internal decapitation) at the same time, they removed the weights, and when the weight of my head once again was carried by the C1, it honestly felt like someone had placed a 50 lb. sack of feed on the top of my head! It was amazing how heavy my head felt, and if it happened to you, you would be surprised, too!]
Today, I definitely can feel the wobbliness of my upper C spine. When I'm well-rested and fresh, it is not as pronounced, but after being up and about for a few hours, each bump in the pickup, each snappy turn of the steering wheel (my husband drives, I do not drive anymore) keeps me well-aware of my cranio-cervical instability, and each bump or
turn adds up collectively until, all tolled, I have that dire NEED to lie down and get the weight off. I am always very aware of the weight of my head.
What do I hope to get from surgery:
The ability to drive again. Without a fixation, if I drive, my head is held in an instinctual,
strained, self-balancing fashion. In order to focus and see what needs to be seen, I hold my head still and steady, and this effort is a great one, which, again, collectively adds to the flareup that I will feel the next day, or that night, after driving.
So, I'd like the freedom to drive again. At almost 60, I can't help but think about my future and my "silver" years ahead. My husband is 11 years older than I am. We've been married 38 years this year, and it is my desire to be able to take care of him as we age, and not be a burden upon him. I would like my independence back, I have many years to live if the Lord "tarries."
Having lived with this instability for 7.5 years, I know things about it that no doctor can understand, and I know the tiny, the subtle, the secret ways I am affected by things. And I have a sense of what will help me. IF my neck and skull were affixed, I think that it will keep me from moving my head so much. I am told that I move my head around a lot when I am talking to someone (something I have, for years, tried to control). With that fixation, it seems common sensible to me that it would prevent me from that motion in the CC junction! It would control my movements in ways that my desire to control them or a neck brace can never do. And I think with a distinct "AH" how good I would feel if the movement at the CC junction were STOPPED! After 7.5 years? It seems like a heavenly thing to achieved a FIXATION that will keep things from moving around, especially my own movements as I do light housework or garden work, or even just chatting with a friend. The other day, I talked with my sister for 2.5 hours on the phone. Even though I was using a light-weight headset on the phone, just the action of holding my head relatively still and using the muscles and ligaments in the back of the skull that are put into action when I talk, altogether add up to a severe reaction to the seemingly benign action of talking! With a fusion, I believe I could talk again to family and friends!
I do not care about any loss of range of motion. I have restricted those movements of my head for years now. Right now, I love the thought of having bolts and screws and plates holding my head right where it needs to be! It's now, or never. I should have gone for it sooner, but in retrospect, I did TRY. I went to New York to see Dr. Bolognese in June of 2007 with every intention of getting a big fusion! I was pre-admitted to the hospital, had the hospital bracelet on my wrist, my friend from NY had already arrived in order to help me in the hospital post-op after my sister would have to leave to go back to work in NH.
I had the motor running and my foot on the gas! Until my doctor decided against me and basically dumped me as a patient!
And, naturally, that experience warded me off of neurosurgeons and surgery for four years now. It's understandable that I became afraid of surgery after that NY experience, but on the other hand, it's time now to let go of the fear and move forward into a chance for improvement.
I take gobs of pain pills. Nortriptyline, Oxycodone, Oxycontin, Cymbalta, Metanx, Lidoderm patches. And I use a lot of iced gel paks. I have a mobility scooter. I KNOW, without a doubt, that there is no natural healing for me. I am not going to see any improvement without mechanical interaction. No, instead, I will see progression, an increase in pain, weakness, and the many neurological symptoms I experience that are due to compression of my brainstem by the C2 odontoid bone.
IF my work comp insurance authorizes a consult with a neurosurgeon, my next journey will begin. A trip to Portland, OR for the consult. I imagine a myriad of CT scans and MRIs will need to be taken and studied. I put my trust in God and my head in the hands of Him and the neurosurgeon, if surgery is offered. I will try and keep the reader posted.
I finally did, this morning, what I should have done all along: type, first, the post on a Word doc and then paste it onto the blog text box. So, here is what is going on in the neurological world of Virginia...
Ponderings about surgery, Sunday, Oct. 23, 2011
I have become "used to" the fact that my arms and hands are weak, and that goes for the rest of my symptoms, too. The symptoms are not mere nuisances, they point toward the progression of residual pains and signs that were left to me after my injury 7.5 years ago.
This morning, as I brushed my teeth, I thought about the times, at night, that I forego brushing, because I feel too weak to wield a toothbrush. And I noticed the painful weakness in my arms after brushing my teeth and a couple of quick swipes with a comb through my self-cut hair. My arms hurt and are so weak. This is definitely a progression.
Another one I can think of right now is the distinct feeling I get each day of my head, all 12 lbs of it, being too heavy for me to hold up any longer, and I seek out someplace, any place, to lie down and take away that stacked weight upon my spine and neck. Each day, I lie down for 2 hours or more, and the sensation of relieving that weight (of my head) produces often a euphoric reaction. An uncontrollable "AH" of sweet release.
[This reminds me of the "invasive cervical traction" I had done in NY several years ago. I've written about it all back when it was done, in November of 2007, but the procedure went thusly: They put you out for a few minutes while they put a halo on you, with the 4 screws going into your skull (through the skin); Then, they wake you up and sit you up in bed, and hook the counter balance weights onto the top of the halo, so they can pick you up by the halo. Then, they start stacking weight and asking if you can handle more, or if you reach a point of euphoria. And most people DO experience euphoria when that weight is removed. My husband's cousin in NY described this procedure as "draconian," and I would definitely agree!
I sat up in that position with the counter balance of 50 lbs holding me for an hour or so, while a CT machine went around me taking pictures and then several specialists pored over the resulting imaging on computer monitors nearby. When they had reached their conclusions, one of which was seeing for the first time that not only had I broken my C1 into 4 pieces, but I also had suffered Atlanto Occipital Dislocation (internal decapitation) at the same time, they removed the weights, and when the weight of my head once again was carried by the C1, it honestly felt like someone had placed a 50 lb. sack of feed on the top of my head! It was amazing how heavy my head felt, and if it happened to you, you would be surprised, too!]
Today, I definitely can feel the wobbliness of my upper C spine. When I'm well-rested and fresh, it is not as pronounced, but after being up and about for a few hours, each bump in the pickup, each snappy turn of the steering wheel (my husband drives, I do not drive anymore) keeps me well-aware of my cranio-cervical instability, and each bump or
turn adds up collectively until, all tolled, I have that dire NEED to lie down and get the weight off. I am always very aware of the weight of my head.
What do I hope to get from surgery:
The ability to drive again. Without a fixation, if I drive, my head is held in an instinctual,
strained, self-balancing fashion. In order to focus and see what needs to be seen, I hold my head still and steady, and this effort is a great one, which, again, collectively adds to the flareup that I will feel the next day, or that night, after driving.
So, I'd like the freedom to drive again. At almost 60, I can't help but think about my future and my "silver" years ahead. My husband is 11 years older than I am. We've been married 38 years this year, and it is my desire to be able to take care of him as we age, and not be a burden upon him. I would like my independence back, I have many years to live if the Lord "tarries."
Having lived with this instability for 7.5 years, I know things about it that no doctor can understand, and I know the tiny, the subtle, the secret ways I am affected by things. And I have a sense of what will help me. IF my neck and skull were affixed, I think that it will keep me from moving my head so much. I am told that I move my head around a lot when I am talking to someone (something I have, for years, tried to control). With that fixation, it seems common sensible to me that it would prevent me from that motion in the CC junction! It would control my movements in ways that my desire to control them or a neck brace can never do. And I think with a distinct "AH" how good I would feel if the movement at the CC junction were STOPPED! After 7.5 years? It seems like a heavenly thing to achieved a FIXATION that will keep things from moving around, especially my own movements as I do light housework or garden work, or even just chatting with a friend. The other day, I talked with my sister for 2.5 hours on the phone. Even though I was using a light-weight headset on the phone, just the action of holding my head relatively still and using the muscles and ligaments in the back of the skull that are put into action when I talk, altogether add up to a severe reaction to the seemingly benign action of talking! With a fusion, I believe I could talk again to family and friends!
I do not care about any loss of range of motion. I have restricted those movements of my head for years now. Right now, I love the thought of having bolts and screws and plates holding my head right where it needs to be! It's now, or never. I should have gone for it sooner, but in retrospect, I did TRY. I went to New York to see Dr. Bolognese in June of 2007 with every intention of getting a big fusion! I was pre-admitted to the hospital, had the hospital bracelet on my wrist, my friend from NY had already arrived in order to help me in the hospital post-op after my sister would have to leave to go back to work in NH.
I had the motor running and my foot on the gas! Until my doctor decided against me and basically dumped me as a patient!
And, naturally, that experience warded me off of neurosurgeons and surgery for four years now. It's understandable that I became afraid of surgery after that NY experience, but on the other hand, it's time now to let go of the fear and move forward into a chance for improvement.
I take gobs of pain pills. Nortriptyline, Oxycodone, Oxycontin, Cymbalta, Metanx, Lidoderm patches. And I use a lot of iced gel paks. I have a mobility scooter. I KNOW, without a doubt, that there is no natural healing for me. I am not going to see any improvement without mechanical interaction. No, instead, I will see progression, an increase in pain, weakness, and the many neurological symptoms I experience that are due to compression of my brainstem by the C2 odontoid bone.
IF my work comp insurance authorizes a consult with a neurosurgeon, my next journey will begin. A trip to Portland, OR for the consult. I imagine a myriad of CT scans and MRIs will need to be taken and studied. I put my trust in God and my head in the hands of Him and the neurosurgeon, if surgery is offered. I will try and keep the reader posted.
Sunday, October 2, 2011
Confused...
I pecked out a long post here to catch up with all that has occurred over the past five months, and I hit "post".... but it simply disappeared. Gone irretrieveably. It had taken so much gumption just to get it written out...and now it was gone. That was two weeks ago.
I'll try something short here first, to see if it will post, before I write something long only to lose it again.
My last post, I was on my way to the doctor at Swedish Hospital near Seattle. With hopes lifting me on my way and dreams of a nice neurosurgeon who would listen, who did not have arrogance and a big ego, and who would thoughtfully consider what could be done to help me.
Fat chance. He was almost as bad as the worst yet, this neurosurgeon the last in the litany of 8 neurosurgeons. He came in the door with his mind made up before even seeing me physically. He did not have more than a few minutes to go over the imaging I'd brought him when I arrived early for the appointment.
He announced that he simply never reads the reports of others. He makes his own decisions. Surgery is not an option for me. My symptoms are due to my Post Traumatic Stress Disorder.
Which only made me cry the harder and I could not stop even though my mind was telling me to stop. I hate crying! I don't want to do it, I am a darn strong woman and a child of the Living God, I shouldn't be crying but when this doctor opened his mouth to speak his first words, I could see that he was no different than most of the others I'd seen before.
He didn't care a lick about me. He pointed to the short version of my files that my PCP had sent him, and announced that I am a "trainwreck," and that NO doctor would ever work on me because they also would see I am a trainwreck waiting to happen.
I told him that the team of neurosurgeons at OHSU in Portland a year and a half ago had studied my imaging and had offered surgery to me. He told me to run as fast as I can away from them.
He was a jerk.
But, in the midst of being just who he is, I could see a positive. I now appreciate the docs at OHSU much more! I'm not in love with the neurosurgeon I saw there (3 times). That was why I was seeking a different surgeon. The Portland doc would not talk to me for more than 15 minutes. I did not see any effort on his part to create a connection with me which might reveal to him ways I need help. He simply did not want to offer me surgery, either, and said so adamantly. But, he did one thing that was either mechanical or heartfelt: he said he would have the whole neurosurgical team look at my imaging and would tell me on my next appointment what they all decided.
And when I went back to find out, this same doc burst into the exam room telling me: "You need surgery and you need it now! No doctor has done anything for you, you are very unstable (instability at the craniocervical junction) and you need rods, screws, plates and wires to shore you up!"
As I said, I decided to wait back then because this doctor, besides only allowing me to stay with him for 15 minutes, and, when I asked him to tell me more about the surgery, he told me he'd tell me more once I decided to go for it, despite those things, he also told me, "Now, you must be aware that you could end up worse after this surgery! You could become paralyzed. You could become a paraplegic. You could die! I do mistakes sometimes, you know!"
THOSE were the reasons I wanted to look elsewhere.
Now, I appreciate that team of docs at OHSU. And I think every day about surgery. This instability at the C1/skull junction is worsening. The CT of the C1 showed, according to the radiologist's report, that the C1 is moving, slipping to one side, allowing the bony finger of C2 to slip the other way within my spinal canal and thus crunch the brainstem...the pain is not good...and right now, I sit here just feeling neurologically OFF, I'm sweating bullets, swallowing problems have been worse than ever, vision is worsening, balance is worse.
I think of surgery every single day. Wondering if I can work up the nerve to go for it. Wanting a sign from the Lord but not getting one that I can read. I want to call up OHSU and schedule an appointment with a kinder, gentler doctor. I want to ask a nurse there just who she would recommend, perhaps to her mother, what doc would she want to treat her mom? Would they do that? Would they allow me to see another neurosurgeon? I don't know.
I need new glasses for sure, and I need to have my teeth fixed. I have a front incisor that looked okay, but it was very ouchy. I went to the small town dentist here locally and he was sick and a woman was taking his place, she drilled into the back of that tooth and accidentally drilled right through to the front! So, she pasted some junk in there that looks terrible. Yeah, I'm tired to the bone. I'm happy with life...but it almost feels like things are piling up too high.
The Lord will lead and guide me, I know. I keep waiting for His sign.
Thank you for reading!
I'll try something short here first, to see if it will post, before I write something long only to lose it again.
My last post, I was on my way to the doctor at Swedish Hospital near Seattle. With hopes lifting me on my way and dreams of a nice neurosurgeon who would listen, who did not have arrogance and a big ego, and who would thoughtfully consider what could be done to help me.
Fat chance. He was almost as bad as the worst yet, this neurosurgeon the last in the litany of 8 neurosurgeons. He came in the door with his mind made up before even seeing me physically. He did not have more than a few minutes to go over the imaging I'd brought him when I arrived early for the appointment.
He announced that he simply never reads the reports of others. He makes his own decisions. Surgery is not an option for me. My symptoms are due to my Post Traumatic Stress Disorder.
Which only made me cry the harder and I could not stop even though my mind was telling me to stop. I hate crying! I don't want to do it, I am a darn strong woman and a child of the Living God, I shouldn't be crying but when this doctor opened his mouth to speak his first words, I could see that he was no different than most of the others I'd seen before.
He didn't care a lick about me. He pointed to the short version of my files that my PCP had sent him, and announced that I am a "trainwreck," and that NO doctor would ever work on me because they also would see I am a trainwreck waiting to happen.
I told him that the team of neurosurgeons at OHSU in Portland a year and a half ago had studied my imaging and had offered surgery to me. He told me to run as fast as I can away from them.
He was a jerk.
But, in the midst of being just who he is, I could see a positive. I now appreciate the docs at OHSU much more! I'm not in love with the neurosurgeon I saw there (3 times). That was why I was seeking a different surgeon. The Portland doc would not talk to me for more than 15 minutes. I did not see any effort on his part to create a connection with me which might reveal to him ways I need help. He simply did not want to offer me surgery, either, and said so adamantly. But, he did one thing that was either mechanical or heartfelt: he said he would have the whole neurosurgical team look at my imaging and would tell me on my next appointment what they all decided.
And when I went back to find out, this same doc burst into the exam room telling me: "You need surgery and you need it now! No doctor has done anything for you, you are very unstable (instability at the craniocervical junction) and you need rods, screws, plates and wires to shore you up!"
As I said, I decided to wait back then because this doctor, besides only allowing me to stay with him for 15 minutes, and, when I asked him to tell me more about the surgery, he told me he'd tell me more once I decided to go for it, despite those things, he also told me, "Now, you must be aware that you could end up worse after this surgery! You could become paralyzed. You could become a paraplegic. You could die! I do mistakes sometimes, you know!"
THOSE were the reasons I wanted to look elsewhere.
Now, I appreciate that team of docs at OHSU. And I think every day about surgery. This instability at the C1/skull junction is worsening. The CT of the C1 showed, according to the radiologist's report, that the C1 is moving, slipping to one side, allowing the bony finger of C2 to slip the other way within my spinal canal and thus crunch the brainstem...the pain is not good...and right now, I sit here just feeling neurologically OFF, I'm sweating bullets, swallowing problems have been worse than ever, vision is worsening, balance is worse.
I think of surgery every single day. Wondering if I can work up the nerve to go for it. Wanting a sign from the Lord but not getting one that I can read. I want to call up OHSU and schedule an appointment with a kinder, gentler doctor. I want to ask a nurse there just who she would recommend, perhaps to her mother, what doc would she want to treat her mom? Would they do that? Would they allow me to see another neurosurgeon? I don't know.
I need new glasses for sure, and I need to have my teeth fixed. I have a front incisor that looked okay, but it was very ouchy. I went to the small town dentist here locally and he was sick and a woman was taking his place, she drilled into the back of that tooth and accidentally drilled right through to the front! So, she pasted some junk in there that looks terrible. Yeah, I'm tired to the bone. I'm happy with life...but it almost feels like things are piling up too high.
The Lord will lead and guide me, I know. I keep waiting for His sign.
Thank you for reading!
Saturday, May 21, 2011
IS it May 21 already?
Are you ready for the rapture tonight? If you are a believing Christian, then, yes, you are!
But, is it going to happen? I'm "not feelin' it." But I don't really know because the book of Matthew tells us no one knows. And it also tells us that Jesus will return as a "thief in the night." Surely, everyone, believer and non-believer alike, knows about May 21 and the prediction that all Christians will be taken up into the sky to live forever with Jesus on that date. It's on TV and radio, the nightly news and billboards. I never saw a thief in the night come with so much prior publicity. But...shrug...maybe it will happen!
For me, I'll be so glad for that day. The only thing that will mar it is that so many of my loved ones do not have that personal relationship with Jesus, and if the Lord came back tonight, they would indeed be "left behind." But, that's their choice.
I did not intend to post on the rapture or "taking up" here just now, but that is what poured out of my heart. Now that I've obeyed God, I will post a couple of other things.
Two sad/happy losses to our Chiari and Christian family. The lovely, spritely Michelle McCollum has passed away. She died on May 18, I believe. Her son was born with Chiari, and her strong advocacy for his health issues led to many of us getting to know Michelle. What a gem of a person she is! Sadly, she was diagnosed with cancer several years ago and has been fighting such a battle ever since.
In and out of hospitals (the "in" days numbering much more than the "out" days, sad to say); at home being hooked to IV poles and other medication suspensing equipment.
I marveled as I watched her, through her emails and posts on the Christian support group, Healing Friends, supporting and encouraging on her son as he excelled in school athletics. She would drive him and other team members all over Texas, while, unseen, her body was challenging her at every turn.
Last year, her left leg was amputated. Infection raged through her body. She fought it all with grace and dignity and sharing with us her understandable human emotions.
We were shocked to hear she had passed to the other side! It seemed like she was doing somewhat better.
Michelle left behind her devoted husband, Brent, and 2 teenaged children, a son and a daughter. We miss you, sweetheart!
Last night, while searching for Michelle's Facebook page, my eye caught a post from Matt Harms. The topic of his post left no doubt: he was readying for his wife's services! What??? What happened to beautiful Becky??? I stayed up late as I searched FB and the web and read her obituary, and read all comments, pages and pages of them, on her FB page.
Becky Harms was 41. She died "at her home," the obit reads. Other than that, I do not know any more. I miss her so much.
Becky had her craniocervical fusion done at TCI at the same time I had my Tethered Cord surgery. She and Matt, two separate occasions, picked me up at JFK airport in NY and delivered me to their (and my) motel in Floral Park. We went out to eat one time together. Since Becky and I were both on the neuro floor at North Shore Hospital at the same time, I often toddled down the hall to her room to visit with her, and her husband Matt would come to my room and sit down and visit, often. Later, I learned from Becky that she had sent him down to check up on me. I was alone at the hospital for 3 days and those visits with Matt and Becky made me feel less alone.
A few times, we sat in each others' motel rooms and talked and talked. I remember her showing me her children's pics on her laptop (and I marveled at someone being able to show pics on a lap top screen far away from their home PC! Boy, how our technology has rushed along. That was back in 2008).
She loved horses and she and Matt had a farm full of them. Sadly, Chiari took away the horses and I could visit and relate with Becky about that. She had a movie star smile! A lovely, loud laugh. I recall her telling me that she used to be a bullrider before her life as a mom. she remains the only lady-bullrider I know.
Becky Harms, I miss you, but a huge part of me is envious of you right now. You no longer have pain. And you are most of all in the Arms of Jesus!! And when you are not holding onto our Lord, you are riding again, perhaps even some bulls along with the horses! I loved you and still do. I look forward to seeing you one day. Please have a good horse saddled up and waiting for me, okay?
But, is it going to happen? I'm "not feelin' it." But I don't really know because the book of Matthew tells us no one knows. And it also tells us that Jesus will return as a "thief in the night." Surely, everyone, believer and non-believer alike, knows about May 21 and the prediction that all Christians will be taken up into the sky to live forever with Jesus on that date. It's on TV and radio, the nightly news and billboards. I never saw a thief in the night come with so much prior publicity. But...shrug...maybe it will happen!
For me, I'll be so glad for that day. The only thing that will mar it is that so many of my loved ones do not have that personal relationship with Jesus, and if the Lord came back tonight, they would indeed be "left behind." But, that's their choice.
I did not intend to post on the rapture or "taking up" here just now, but that is what poured out of my heart. Now that I've obeyed God, I will post a couple of other things.
Two sad/happy losses to our Chiari and Christian family. The lovely, spritely Michelle McCollum has passed away. She died on May 18, I believe. Her son was born with Chiari, and her strong advocacy for his health issues led to many of us getting to know Michelle. What a gem of a person she is! Sadly, she was diagnosed with cancer several years ago and has been fighting such a battle ever since.
In and out of hospitals (the "in" days numbering much more than the "out" days, sad to say); at home being hooked to IV poles and other medication suspensing equipment.
I marveled as I watched her, through her emails and posts on the Christian support group, Healing Friends, supporting and encouraging on her son as he excelled in school athletics. She would drive him and other team members all over Texas, while, unseen, her body was challenging her at every turn.
Last year, her left leg was amputated. Infection raged through her body. She fought it all with grace and dignity and sharing with us her understandable human emotions.
We were shocked to hear she had passed to the other side! It seemed like she was doing somewhat better.
Michelle left behind her devoted husband, Brent, and 2 teenaged children, a son and a daughter. We miss you, sweetheart!
Last night, while searching for Michelle's Facebook page, my eye caught a post from Matt Harms. The topic of his post left no doubt: he was readying for his wife's services! What??? What happened to beautiful Becky??? I stayed up late as I searched FB and the web and read her obituary, and read all comments, pages and pages of them, on her FB page.
Becky Harms was 41. She died "at her home," the obit reads. Other than that, I do not know any more. I miss her so much.
Becky had her craniocervical fusion done at TCI at the same time I had my Tethered Cord surgery. She and Matt, two separate occasions, picked me up at JFK airport in NY and delivered me to their (and my) motel in Floral Park. We went out to eat one time together. Since Becky and I were both on the neuro floor at North Shore Hospital at the same time, I often toddled down the hall to her room to visit with her, and her husband Matt would come to my room and sit down and visit, often. Later, I learned from Becky that she had sent him down to check up on me. I was alone at the hospital for 3 days and those visits with Matt and Becky made me feel less alone.
A few times, we sat in each others' motel rooms and talked and talked. I remember her showing me her children's pics on her laptop (and I marveled at someone being able to show pics on a lap top screen far away from their home PC! Boy, how our technology has rushed along. That was back in 2008).
She loved horses and she and Matt had a farm full of them. Sadly, Chiari took away the horses and I could visit and relate with Becky about that. She had a movie star smile! A lovely, loud laugh. I recall her telling me that she used to be a bullrider before her life as a mom. she remains the only lady-bullrider I know.
Becky Harms, I miss you, but a huge part of me is envious of you right now. You no longer have pain. And you are most of all in the Arms of Jesus!! And when you are not holding onto our Lord, you are riding again, perhaps even some bulls along with the horses! I loved you and still do. I look forward to seeing you one day. Please have a good horse saddled up and waiting for me, okay?
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