Lying in bed at 8:30 am...
The muscles in my arms, in particular my deltoids, feel like they are dripping acid...
Deep, profound aching in arms and palms of hands and neck and shoulders...
This is central pain...
Pain that originates in the spinal cord and/or brain...
I've read stroke patients often deal with such pain. I did not know that.
Before.
My dog, on the bed, shifts his position and leans against my back. I yearn for his closeness, expecting the only thing good I could sense right now, his love and loyalty, his warmth and his understanding...
but, please, the pressure causes more pain. Which I will endure in exchange for that good...
waiting...
for oxycodone to ease the aching...remembering my pain doctor telling me, "If the pain doesn't go away in 40 minutes, take another pill."
I thought this was gone after my surgery. I had thought that the stabilization of my head and neck, the miracle of the surgery, had also removed this condition that has haunted my days for years. But...I guess not. I can see now that the higher dose of pain meds was handling this pain. And I've been weaning myself down on the meds, finally, the other day, reaching the dosage plateau I was on "pre-surgery."
So much on the news these days about abuse of oxycodone... the harm it does for so many who need this medication, the families who begin to wrongly judge their loved ones...thankfully, I do not have to deal with this lack of understanding or this misjudgment. Thanks be to God.
I know this will pass. At least, I believe it will. This is the very pain that was keeping me in bed most of the day "pre-surgery." This is the very pain that convinced me to proceed with a dangerous and risky surgery, just knowing I could not continue life that way. Now, like a long-gone ghost that has suddenly returned, it's back. My hope, where I'm placing my confidence, is that the gain from the surgery will be, at least, that this deeply, profound, all-encompassing, life-stopping pain will pass...will pass more quickly than it did before surgery. I have faith that it will. I have faith that all things will eventually be so much better. Please, oh Lord.
Thursday, April 19, 2012
Saturday, March 31, 2012
Recovery going well!
Of course, I have up and down days. And up and down "half days."
Yesterday, I can't describe it....for the first half of the day, I felt totally normal. This is something that I just do NOT feel!! Over the last 8 years, I might have a couple of hours of feeling pretty good, once or twice a year. But to go on for hours with this feeling that I am not a victim, an "injury victim," a patient anymore, well, all I can say is it was a feeling of elation and joy!
I thank God every day for the screws in my C1 and C2! Just those two transarticular screws mean the world to me. I fought tooth and nail for them, and now, in what seems in retrospect a simple endeavor, I have them and my heavy head is now firmly attached to my spine. Praise the Lord!
Already, the swallowing problems are nonexistent! I can't wait to see Dr. Ragel and tell him about this. About how much better I am feeling already and how I absolutely know that it's going to get many, many times better!
Boy, that's a lot of exclamation points.
I do still have pain. I was put onto a lot of painkillers in the hospital and I thank them for that. It showed me that a patient needs to be relaxed and out of pain in order to heal. Not writhing in pain. I did have a lot of pain in the hospital and was asking them for more painkillers every two hours, but they did their best to accomodate me and I do not recall having a terrible time. I liked it there!
So, I've been working to get off of them altogether, if I can. I'm already back down, pretty much, to the dosage I was taking before surgery. I'm proud of that. Now, I'm going to keep after it and see if I can get off, eventually, altogether. We'll see.
I look across the road and now I think, "I want to go walking over there. I think I can do it." We've been having a ton of rain for several days in a row, so I haven't tried. It's been several years since I've been over there (I wrote about this wonderful area to hike in perhaps the first year of this blog. And I also wrote about having to give it up. I'm praying I'll be able to get back into the woods with my dogs. What therapy that will be, what a feeding for my soul. It's been so long since I've been able to be out alone in the woods, and my life up until my injury had been spent alone on the trails and in the mountains and just out on the back of a horse.)
So, that's my update so far. Things going well, and expectations for even more. Thank you, dear reader.
Yesterday, I can't describe it....for the first half of the day, I felt totally normal. This is something that I just do NOT feel!! Over the last 8 years, I might have a couple of hours of feeling pretty good, once or twice a year. But to go on for hours with this feeling that I am not a victim, an "injury victim," a patient anymore, well, all I can say is it was a feeling of elation and joy!
I thank God every day for the screws in my C1 and C2! Just those two transarticular screws mean the world to me. I fought tooth and nail for them, and now, in what seems in retrospect a simple endeavor, I have them and my heavy head is now firmly attached to my spine. Praise the Lord!
Already, the swallowing problems are nonexistent! I can't wait to see Dr. Ragel and tell him about this. About how much better I am feeling already and how I absolutely know that it's going to get many, many times better!
Boy, that's a lot of exclamation points.
I do still have pain. I was put onto a lot of painkillers in the hospital and I thank them for that. It showed me that a patient needs to be relaxed and out of pain in order to heal. Not writhing in pain. I did have a lot of pain in the hospital and was asking them for more painkillers every two hours, but they did their best to accomodate me and I do not recall having a terrible time. I liked it there!
So, I've been working to get off of them altogether, if I can. I'm already back down, pretty much, to the dosage I was taking before surgery. I'm proud of that. Now, I'm going to keep after it and see if I can get off, eventually, altogether. We'll see.
I look across the road and now I think, "I want to go walking over there. I think I can do it." We've been having a ton of rain for several days in a row, so I haven't tried. It's been several years since I've been over there (I wrote about this wonderful area to hike in perhaps the first year of this blog. And I also wrote about having to give it up. I'm praying I'll be able to get back into the woods with my dogs. What therapy that will be, what a feeding for my soul. It's been so long since I've been able to be out alone in the woods, and my life up until my injury had been spent alone on the trails and in the mountains and just out on the back of a horse.)
So, that's my update so far. Things going well, and expectations for even more. Thank you, dear reader.
Saturday, March 17, 2012
A lot has gone on!!
Dear friends and readers,
Alot has happened over the last few months, since I last posted. I apologize for not keeping things up to date here, but at least I promise this: I'm not giving up on my blog! With email and facebook and all the other things in life that pull this way and that with my time and energy, it has crossed my mind to let this blog "go." But today, I made the decision not to do that. I need this blog for future purposes, which I will share later, and also for a place to do a bit of more personal venting (than I care to do on facebook), AND after all, this is the place where I publicly have shared the journey, the ups and downs, high and lows of traveling this road of post-catastrophic injury. How could I let this go?
Well, first of all, I had the surgery!! Yes, finally, on Feb. 17, a month ago, I had my surgery at OHSU in Portland, Oregon. Dr. Brian Ragel, my neurosurgeon, did an awesome job, and I have been doing well. It's hard for me to believe it's been only a month! And due to my brain injury, it's hard to remember a whole lot about the surgery and stay at the hospital, but I DO know that it went very smoothly! The staff did their best to help me with the pain, which was pretty bad, as expected. I was 100% happy with OHSU and Dr. Ragel and all of the staff!! Very good care, including post-operatively. And only a couple of hours away from home, very good indeed!
My husband, Pete, and I drove over to Portland a day early in order for me to undergo pre-operative testing. We stayed in a nice hotel not far from the hospital, called The Avalon Hotel. (If anyone else stays there, ask for the OHSU patient rate. It is only $109 a night, and the rooms are so lovely! Ask for a balcony room facing the river, it'll blow you away!)
Early the next morning, we headed over to the hospital. While waiting for staff to arrive, we visited with a nice couple from Idaho who were there for surgery on the wife. A nice, country/ranch type couple, just what we needed to feel right at home. I asked why they came all the way to Portland and was told it was because of the good reputation of the neurosurgical department of OHSU (Oregon Health and Sciences University). Throughout Pete's wait during my surgery, he visited with several families from out of the area, one even from Sacramento, CA, and when he asked why they had come so far, and received the same answer. I'm sure that gave him a lot of confidence and support.
The surgery was supposed to take 3-4 hours, and I think it might have taken a little longer than that, but not much. Two screws (transarticular) were driven up through the base of my C2 into my C1, carefully and purposely missing my vetebral arteries. I was later told that they also did a graph fusion using cadaver bone. My incision starts a couple of inches into my hairline at the back of my head and then proceeds down my back along the upper C spine, totalling about 8 inches. There are two horizontal incisions, one on each side at the base of the incision, and though I have not had a chance to ask what they are, I suspect they were for the shunts during surgery. I vaguely recall that someone came and removed the shunt(s) when I was back in my room.
On the neurosurgery floor, all rooms are private rooms. Yay! That made it really nice and so did the nice big window in my room. Dr. Ragel and his PA did come to my room a couple of times, very briefly, long enough for me to heap praises upon him. I can't express how happy I am to FINALLY have my broken C1 stabilized!!! Anyone who has been following this blog knows that this post fulfills a very long journey that started back in April, 2004 when I broke my neck, and I've been posting here since 2007, I believe, about so many thing: my trips to New York to unsuccessfully seek treatment for my neck. My trip there to undergo Tethered Cord Surgery in November 2007. My story of being "dumped" as a patient there when I was told that my C1 had "spontaneously healed" and was no longer broken; my subsequent trips to other neurosurgeons and the reactions and rude treatment I received from those doctors. And now, finally, the tale of finding Dr. Ragel; at first questioning if that was the right place and doctor for me, but in the end, realizing that Dr. Ragel is my gift from God, the right man at the right time.
I stayed in the hospital from Friday, the day of the surgery, until the following Wednesday: 5 days. The ride home was painfree and worry-free. Pete has been incredible in his care for me and doing household chores. What a guy! I am so blessed. I do not need to go back for followup until May. I went to my local, primary doctor's office in order to have the staples removed. The incision has healed with ZERO problems, no infection or difficulties with healing. Thank the Lord!
I received so many cards and well wishes online, and so many people praying for me made a huge impact, I know. Thank you so much for those prayers!!
I don't notice ANY change in my range of motion! What a blessing that is. I guess that shows the amount of ROM I'd lost following my injury, but what I take from it is appreciation and joy that I don't have to learn to live with even less! Praise God.
I have lots of restrictions for the first six weeks, which means they will be in effect for another two weeks. I have them pinned up on my bulletin board above my computer and they are very simple: No Bending. No Lifting, pushing or pulling greater than 10 lbs, and No twisting. Limit repetitive overhead work. (Great! No window washing! Works for me!)
I'm trying to abide by these restrictions and have done pretty well so far!
I think I'm being realistic in my "hopes" for this surgery. First of all, the most important goal would be to stabilize the upper Cspine, and with this surgery, I'm sure I can say confidently: "Mission Accomplished!" I am hoping that, as time goes on, I will see improvement in other areas. I hope that one day, I will be able to walk enough of a distance that will be a benefit to my health, but I realise that it's been so long since I've been able to walk that it will take months to get up to speed. I know and readily admit that my muscles are weak and I'm out of condition. But, with time, I hope I'll be able to walk a bit and then more and then more, eventually to where I can walk the dogs when we go camping and perhaps even be able to walk across the road from our house again!
Dr. Ragel told me that they are often surprised by how many other things improve after a surgery such as this. I have faith I'll be one of those examples, but I know it's gonna take time. It took me years to get to this point of weakness; it's going to take some time to get back into any kind of conditioning that will allow me to walk enough distance that makes a difference. I have faith; it will happen!
Thank you again, dear reader.
Alot has happened over the last few months, since I last posted. I apologize for not keeping things up to date here, but at least I promise this: I'm not giving up on my blog! With email and facebook and all the other things in life that pull this way and that with my time and energy, it has crossed my mind to let this blog "go." But today, I made the decision not to do that. I need this blog for future purposes, which I will share later, and also for a place to do a bit of more personal venting (than I care to do on facebook), AND after all, this is the place where I publicly have shared the journey, the ups and downs, high and lows of traveling this road of post-catastrophic injury. How could I let this go?
Well, first of all, I had the surgery!! Yes, finally, on Feb. 17, a month ago, I had my surgery at OHSU in Portland, Oregon. Dr. Brian Ragel, my neurosurgeon, did an awesome job, and I have been doing well. It's hard for me to believe it's been only a month! And due to my brain injury, it's hard to remember a whole lot about the surgery and stay at the hospital, but I DO know that it went very smoothly! The staff did their best to help me with the pain, which was pretty bad, as expected. I was 100% happy with OHSU and Dr. Ragel and all of the staff!! Very good care, including post-operatively. And only a couple of hours away from home, very good indeed!
My husband, Pete, and I drove over to Portland a day early in order for me to undergo pre-operative testing. We stayed in a nice hotel not far from the hospital, called The Avalon Hotel. (If anyone else stays there, ask for the OHSU patient rate. It is only $109 a night, and the rooms are so lovely! Ask for a balcony room facing the river, it'll blow you away!)
Early the next morning, we headed over to the hospital. While waiting for staff to arrive, we visited with a nice couple from Idaho who were there for surgery on the wife. A nice, country/ranch type couple, just what we needed to feel right at home. I asked why they came all the way to Portland and was told it was because of the good reputation of the neurosurgical department of OHSU (Oregon Health and Sciences University). Throughout Pete's wait during my surgery, he visited with several families from out of the area, one even from Sacramento, CA, and when he asked why they had come so far, and received the same answer. I'm sure that gave him a lot of confidence and support.
The surgery was supposed to take 3-4 hours, and I think it might have taken a little longer than that, but not much. Two screws (transarticular) were driven up through the base of my C2 into my C1, carefully and purposely missing my vetebral arteries. I was later told that they also did a graph fusion using cadaver bone. My incision starts a couple of inches into my hairline at the back of my head and then proceeds down my back along the upper C spine, totalling about 8 inches. There are two horizontal incisions, one on each side at the base of the incision, and though I have not had a chance to ask what they are, I suspect they were for the shunts during surgery. I vaguely recall that someone came and removed the shunt(s) when I was back in my room.
On the neurosurgery floor, all rooms are private rooms. Yay! That made it really nice and so did the nice big window in my room. Dr. Ragel and his PA did come to my room a couple of times, very briefly, long enough for me to heap praises upon him. I can't express how happy I am to FINALLY have my broken C1 stabilized!!! Anyone who has been following this blog knows that this post fulfills a very long journey that started back in April, 2004 when I broke my neck, and I've been posting here since 2007, I believe, about so many thing: my trips to New York to unsuccessfully seek treatment for my neck. My trip there to undergo Tethered Cord Surgery in November 2007. My story of being "dumped" as a patient there when I was told that my C1 had "spontaneously healed" and was no longer broken; my subsequent trips to other neurosurgeons and the reactions and rude treatment I received from those doctors. And now, finally, the tale of finding Dr. Ragel; at first questioning if that was the right place and doctor for me, but in the end, realizing that Dr. Ragel is my gift from God, the right man at the right time.
I stayed in the hospital from Friday, the day of the surgery, until the following Wednesday: 5 days. The ride home was painfree and worry-free. Pete has been incredible in his care for me and doing household chores. What a guy! I am so blessed. I do not need to go back for followup until May. I went to my local, primary doctor's office in order to have the staples removed. The incision has healed with ZERO problems, no infection or difficulties with healing. Thank the Lord!
I received so many cards and well wishes online, and so many people praying for me made a huge impact, I know. Thank you so much for those prayers!!
I don't notice ANY change in my range of motion! What a blessing that is. I guess that shows the amount of ROM I'd lost following my injury, but what I take from it is appreciation and joy that I don't have to learn to live with even less! Praise God.
I have lots of restrictions for the first six weeks, which means they will be in effect for another two weeks. I have them pinned up on my bulletin board above my computer and they are very simple: No Bending. No Lifting, pushing or pulling greater than 10 lbs, and No twisting. Limit repetitive overhead work. (Great! No window washing! Works for me!)
I'm trying to abide by these restrictions and have done pretty well so far!
I think I'm being realistic in my "hopes" for this surgery. First of all, the most important goal would be to stabilize the upper Cspine, and with this surgery, I'm sure I can say confidently: "Mission Accomplished!" I am hoping that, as time goes on, I will see improvement in other areas. I hope that one day, I will be able to walk enough of a distance that will be a benefit to my health, but I realise that it's been so long since I've been able to walk that it will take months to get up to speed. I know and readily admit that my muscles are weak and I'm out of condition. But, with time, I hope I'll be able to walk a bit and then more and then more, eventually to where I can walk the dogs when we go camping and perhaps even be able to walk across the road from our house again!
Dr. Ragel told me that they are often surprised by how many other things improve after a surgery such as this. I have faith I'll be one of those examples, but I know it's gonna take time. It took me years to get to this point of weakness; it's going to take some time to get back into any kind of conditioning that will allow me to walk enough distance that makes a difference. I have faith; it will happen!
Thank you again, dear reader.
Wednesday, December 7, 2011
A strange thing, HOPE!
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.
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.
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.
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