Thursday, April 19, 2012

waiting....for it to pass...

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.


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...


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.

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.

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.