I got an LSB this morning. They did two again like last time to cover both my right foot and knee. We talked a bit about the hyperbaric oxygen therapy that might help me and I found out from the doctor they have the facilities, but they don't have the the plumbing done. Like some horrible joke. I gather from what he said, it's been like that for a significant amount of time. The doctors petitioned for the higher ups to finish the work, but the PTBs said it was too much money.
The article explains it better than I understood at the time, and I see that there really is quite a bit involved. But...the usefulness of the treatment to our troops and even civilians in the area seems to be a good reason to get funding for it. Why outsource when you are half way to the goal of inhouse?
I had a hard time with my LSB yesterday. I woke up during the procedure in so much pain the doctor removed the needle and asked if I wanted to stop. But with a little more anesthetic I managed to continue. It was just a little unusual. I usually don't remember the procedure much at all as if I slept through the whole thing.
My back is pretty sore, but my RSD pain is feeling better today.
We just had a nice visit with our aunt and uncle who came up from N.C. This aunt is my mother's sister. On Saturday my parents and our visitors took their tools with them and created two beautiful flowerbeds in front of the house. They really look good now, but in bloom and with growth I can only imagine how nice it will be.
Between the few jobs I've been doing I am hoping to have enough money to cover Finale 2007 upgrade and a newer 88 key MIDI capable (most are) keyboard that doesn't have cheap plastic keys. I will do what I can to find a good one and a good deal, but the keyboard I have now--though functional--is archaic to say the least. And it doesn't have enough keys to play live recordings or functionality to record velocity and other MIDI attributes. I'm really looking forward to these improvements so I can return to composing with a vigor. I have missed it so much and have longed for it quite enough. Now I am going to dig in.
On the RSD front, I'll be getting a lumbar sympathetic block on June 29. We will see how that helps and assess the situation from there.
And I'll try to be on my computer updating my blog and saying hi to people through email and chat more often. I have been feeling a bit better these past few weeks.
But now it is 2:30 am and way past my bed time.
To all the saints scattered throughout all the world,
grace and peace from God our Father and the Lord Jesus Christ.
I had my first appointment at Pain Management Clinic, Portsmouth on November 1 (that is, since I've been back in the Naval healthcare system). The good old Portsmouth Naval Medical Center. I was last there for pain managment three years ago this January. Some of the doctors and nurses remembered me. In fact, the doctor I have there now was one of the doctors who treated me while I was attending BJU.
He has suggested that I try another Spinal Cord Stimulator. Although I'm not keen to go through the process again, he might be right that it worked before and might work better with a new system. He preferes to use a different company than I had before. He believes his brand is tried and true. I will not be having any SCS procedures until January 2007 at the earliest.
You never want to have insurance woes when you're trying to purchase your $400 medication that you absolutely need and cannot go off suddenly. Or the sleep medication that makes it possible to get through a night in relative peace. Or the pain medication, that once again you cannot stop taking suddenly or you will be in serious trouble.
Fortunately, the pain meds weren't that expensive and I could lose some sleep. And thank God for medication samples doctors give you. That got me through this little hump.
And once again, God comes through with His ways better than ours. I was issued a military ID this morning bright and early. And with that shiny new card I was able to purchase all three of my medicines.
This means I probably won't be going to Duke again for a while unless some amazing innovation in RSDS treatment comes out that would work for me.
I am doing somewhat better since I had my bandages removed yesterday. My dad did the honors, and despite my apprehension they came off easily. Last time I wasn't so lucky. The bandages always seem to make my back stiffer. Once they are off, it is always such a relief. I have staples this time, instead of stitches (11 down and 9 across--middle of the back and lower right side respectively). They will be removed this coming Friday by my PCM. Thankfully, I don't have to go back to Durham for that.
Thanks for the notes and prayers.
Well, my mother and I made it back from Durham today at 4:30. My surgery was moved up a bit. Fortunately, I was early to the medical center, so as soon as I walked in I was whisked away to surgery. Apparently the anesthesiologist knew how much I wanted to sleep right through this operation (I had to be awake for the previous three to answer questions), so he gave me plenty of medicine and I don't remember a thing: just going in and waking up in recovery. Just the way I like it. No one really needs to be awake during surgery on their back, imho.
I am feeling okay. This will probably be my last message for a while. I just wanted to say hi before I get on my bed and recover.
I am doing all right on my medication. If I manage to take it all on time. I normally do, but there are times. I still am unable to do much, but I do have my good days. In fact, I went to Busch Gardens, Williamsburg with my family last Saturday. I had about two good hours there, and two bad ones, but overall I enjoyed it. I was hurting the next day (which was unfortunate since it was the Lord's Day), but I still went to church, managed to play for the services and it was a beautiful day, despite my discomfort.
I am enjoying the benifit of sleep medication now. Before, I had pain during my sleep which gave me the most horrid dreams, now I manage 5-6 hours of dreamless sleep. That is remarkable to me. The medication does seem to be slowly losing affectiveness, but I figure if I can get 5 hours, I can deal with the dreams the rest of the night. Fortunately, I am a lucid dreamer and can wake myself up usually if the dream is really bad.
I have decided to have my Spinal Cord Stimulator removed. Frankly, it is taking up space in my back, and I don't like it there. Especially with the risk involved without any of the benefits. So, on June 6, I will have surgery. But as a blessing, I will have the surgery at the Ambulatory Clinic instead of Duke University Hospital (they are very close to each other). I have had a better experience at the former than the latter, although I will have the same surgeon as before.
My doctor and I have discussed other options of treatment, and I will see her again on June 5. So there may be other avenues to take. We will see.
I visited Duke today. It was okay, really. My mom and I had brunch in Durham before my appointment, and eating really helped me feel a lot better. Just call that common sense, right?
So here's the news about the stimulator:
Dr. O will replace my electrodes/leads if I say yes. I haven't decided. But it will be a more serious surgery. He would have to make a larger incision in my back, and shave the bone of my spine to place this different kind of lead (called a plate, I believe). And he would have to do this by sight, which is why the incision is so much bigger. I'm not sure if this could be a day surgery, which would have insurance implications. I forgot to ask that question!
Here are the unknowns:
So I am praying about this, and I'll let you know what I decide. If I say no, the stimulator comes out. So there will be one more surgery at least.
The other aspect I hope you will pray about is my medication. I am going up on it, and it might cause some side effects for a while. Pray it won't be so bad. And I'm trying one new medicine that might help me sleep better (and therefore get more rested).
I'll keep you apprised.
And I hope to be blogging more in the future. About more than my RSD, that is.
I was at Duke today again. I'm really tired and worn out. A little discouraged too.
My stimulator could not be programmed. I started having back pain almost immediately when setting the stimulation levels. And beyond that, the stimulation started causing muscle spasms. So...we turned it off.
The doctors have no idea what is wrong. Obviously, there was a problem with the actual IPG that was replaced on December 5. It was deffective. But, it seems that was not the only problem to the system.
I will see my surgeon in about 3 weeks. I doubt I will continue with the stimulator; it looks like medication will be my best bet for pain management. Well, really God's grace.
Well, we made it back at 7 something. I don't really remember when. I was checked into the hospital at 7h45. So about 12 hours. I was in the preop room with my IV and completely hooked up from 8 to 12h30. I was supposed to have surgery at 10h15. But...you know how it goes. I was very bored. No books aloud. No one to talk to. I couldn't sleep but for a few minutes near the end of the wait. So I listened and people watched (as much as I could without my glasses). There are many accents floating around Duke University Hospital. It was pleasant to hear. And also, I prayed. God was good too. The waiting really wasn't too bad, and the surgery even less so.
My mother said that the surgeon was very kind to her and patiently answered her questions. I found him still obnoxious and I was frustrated, but the rest of the team comforted me and encouraged me. Thankfully. I needed it.
They discovered fluid in the IPG battery (they are sending it to the lab to figure that one out). They removed it and replaced it. And when they did. It seemed like everything was fine. The new one turned on and I had parasthesia. It seemed like my programs were okay too.
Another plus, there's only one cut. And it isn't too big. I should heal pretty fast and not have a lot of pain. Or at least not too much. Thank you for all of your prayers on my behalf.
Well, my surgery is tomorrow at 10:15 am. I have to be there two hours early so my mom and I are driving up tonight.
The surgeon doesn't expect this will be as involved as the first one. Let's hope so.
Yesterday, my 2nd surgery for my spinal cord stimulator was scheduled. The day is Monday, December 5. So I'll probably going up there on Sunday afternoon. The surgery last time was in the early hours of the morning.
This time, I'm hoping, it won't be as bad. It will focus on the leads. That's what the doctor will try to fix.
I've gone up to 5 times a day for my medicine. 7am, 11am, 3pm, 7pm, and 11pm. Not too bad right? I'm getting used to it. And it is already helping me.
Well, the title says it all. The reprogramming of my SCS didn't work. Therefore, the choice left to me, revise the system. And that must be done surgically. Even that has a chance of failure because we still don't know what has caused this problem.
But on the bright side, hopefully this will be the last surgery I have for a while.
I haven't scheduled it yet. But I am going to soon. There may be one more appointment with the surgeon, but I expect he will just want to get the surgery over with. Me too.
I went to Duke again yesterday. This time I saw my surgeon who put in my SCS. Unfortunately, he has no idea why it is not working. It is causing pain instead of therapy. The
Advanced Bionics technicians seem not to understand either. They have done all the mechanical tests they can and don't see any problems. The doctor said the leads have not moved after seeing my two fluoros.
So what to do...
I don't want to have surgery again, but I think the SCS is worth it. Plus, I won't have to have my IPG implanted, it's already there. Therefore, a new surgery might not be as involved as the first.
The other option is to have the SCS removed and forget the whole thing. I really don't want to do that yet though.
Right now, it's wait and see.
I haven't find out for sure what is wrong with my SCS. I had a fluoro (fluoroscopy) done yesterday and the surgeon is going to compare that one with the one from the surgery. Brian, a technician from Advanced Bionics, came to try to reprogram my IPG. Out of sixteen contacts on the two leads I have, only two would work. Just barely. And not without pain.
This is what might have happened:
The leads may have migrated into the dura of my spine. (The dura is the tough fibrous membrane covering the brain and the spinal cord.) Now this may have only been a little movement. The surgeon did see anything noticeable right away from yesterdays pictures.
What is happening though, I am getting no paresthesia (i.e., therapy for the pain). I am, however, getting horrible back pain. So I am not using the stimulator at all until the doctor figures out what's up.
I am going to Duke again tomorrow. I found out last time I was there (a week ago) that there might be a serious problem that could mean another surgery. I hope not. I will explain more when the doctors figure everything out.
I should find out for sure what the doctors want to do. At least I think they are going to tell me. We will see.
My appointment is at 2 pm.
Because of the complication, I cannot use the stimulator at all. Thus my pain level is higher again. And I have had some (more) trouble sleeping.
Kyle and I will leave this morning at 9:30.
I can use all the prayers I can get.
I got to completely charge myself up today. It took 4 hours! I pretty much expected that it would, but you never really know how long 4 hours is until you are counting down. The first hour was fine, but after that the charger kept moving, and when it is not over the battery it beeps. Annoying. Good design, but annoying.
So to help you out, since many of you may have not charged yourselves, here is a brief description of what goes on.
If anyone would like to try this, I know a good surgeon.
Both of my bandages are off now. It is a relief to have them off, they pressed against the cuts and caused more pain. But seeing the cuts is another thing. I am half tempted to post pictures. That might be gross though. The incisions are like 4 inches. I didn't realize they would be that big. Okay, enough of that.
I have to go to Duke again tomorrow. I will be getting my SCS programmed again. Pray that we find some good programs. The ones I have now do not help me. My pain was really high today. I fell asleep at 7pm. Now I probably won't be able to sleep tonight very much.
All things considered, I am doing pretty well. Pray for me that I would be able to finish some wedding music I'm writing. For me writing the music out takes a while. I know I can do it, but sitting up at a computer is not my idea of a good time right now.
One other thing, I finished God's Secretaries. It really was a great book on the Translators of the King James. I really wish I hadn't put it down for so long. I had no problem getting back into Nicolson's narrative because I like his writing style, but I had trouble remembering some of the facts from early on. I have been thinking about reading it again. But I want to finish Paradise Lost first. The problem is the book is so heavy, I'm not supposed to lift it. I will write more about Secretaries later. There were some interesting facts. And I'll mention more about the book in general. Maybe provide some quotes and links to some of the more interesting historical facts.
Here is a verse I've drawn comfort from recently.
Oh, how abundant is your goodness,
which you have stored up for those who fear you
and worked for those who take refuge in you,
in the sight of the children of mankind!
Hey, I am back from Duke. I didn't have to stay over night! Praise God. I was really happy not to have to stay there. Also, the stimulator is programmed and running. It is not perfectly attuned yet, because we programmed it right after surgery, so I will be playing around with the controls and I'll meet with my Programmer on Tuesday to work on some more precision programs.
I am in a lot of pain, but mostly when I walk or move. So sitting or lying down still is okay. But walking and standing, not so fun. But I am really suprised how well I do feel. I have to be very careful especially these first 2 or 3 weeks to watch my movement. I am not allowed to pick up anything heavy or do any creative bending or turning side to side. The leads have to scar over to keep them positioned "permanently"; they could move if I am not careful right now. It takes 4-6 weeks to really get the healing done. I'll be meeting with the doctors several times for follow-ups.
Over all the experience wasn't too bad. I was awake most of the surgery, just heavily drugged. It was not pleasant drugging though unfortunately. But I made it through it. With God's help. Indeed. I remember some urgent calling to Him several times in the operating room.
We will see how this goes. I am very hopeful. Like I said, it is on and helps with my leg, but now my back is hurting. So it will be a while to see its full effects. But I am patient. Really.
Thanks for praying.
(I'm using Christa's laptop. I'll spell check later. Sorry for any problems. I have to go to bed now.)
Wow. I just had a great call. The doctor's office at Duke. Yes, you guessed it. They wanted to schedule my surgery. They are on the ball this time. I didn't expect to hear from them for a while at least.
So here's the plan:
Wednesday, April 6 -- Pre-Op appointment
Thursday, April 7 -- Surgery
So (for review) this surgery will be to implant a spinal cord stimulator. This is will be the permanent placement.
I had a fairly good doctors appointments yesterday at Duke. Everything was okay except it really was painfully taxing travelling there and back. And we were down there a lot longer than usual.
That's why I'm still up at 1 am.
The surgeon said late April. We'll see.
Oh, what made my day. When we were home that night I was sitting down stairs on my bed talking to Christa and my brother came in behind me and held a Snickers bar over my head. He had bought it for me at school that night. It was one of those supersized ones.
So I guess my blog has become an RSD/appointment alert system. Really, I would like to write more, but I have been ill more often since the SCS trial. I'm not sure why exactly because I haven't been more active. The doctor even raised my pain medication dosage, but that hasn't seemed to help.
But there is hope in sight. Tomorrow is my referral appointment with the surgeon for the permanent SCS device. It is at 3:30, but I have my regular appointment on the same day around 1. So it will be an all day event.
Once again I ask for your prayers. And if it is God's will it would be nice if the SCS surgery were soon.
I'll let you know what's going on when I get back.
It's that time again when I head off to Duke for my 4 weeks appointment. I go to get my prescription and chat with my doctor. I am going to talk to her about break through pain, which is, well pain that breaks through. I am going to see if she will proscribe something fast-acting that will take care of flare ups so I don't have to cry in bed. Maybe I won't miss so much church (as I have been lately).
Anyway, 3½ hours there and 3½ hours back or thereabout. My mother will be my driver; I don't drive much anymore. The appointment may or may not take more than 15 minutes. I'm not bitter really. I am very thankful that I have been able to go to Duke.
The real appointment is March 15. As I have no doubt begun to drive you crazy with reminding you. That is when I will see the doctor that will do the final procedure for the spinal cord stimulator.
I'm back from Duke once again. The lead has been taken out of my back and the scs device returned. Dr. Pasi and I discussed the test, and I made my decision. I am going to get the permanent device.
So. It was a success. The new procedure should be scheduled probably in 4 weeks. I don't know anything else really.
thanks for your prayers.
Now that I don't have the scs, I've got the pain back and I want my remote control to turn the pain off.
So. The day after the surgery is supposed to be your first journal day when trying out your spinal cord stimulator. But I slept a lot of the day away. That's okay though. I started moving around this afternoon. The stimulator is doing its job. Basically what I'm doing now is playing with my remote control to get the settings the way I like them.
Right now because the scs lead isn't permanently implanted, it moves around quite a bit (when I move, it moves). This causes the stimulation to go up and down, on and off. That takes some getting used to. And I have to figure out what is the optimal setting for sitting down, walking, lying down, etc.
But the trial is going pretty well. My back is sore, no doubt. But it'll get better. I was convinced that this was a very bad idea this morning when I was in so much pain and had only 3 hours of sleep, but now I see how my judgment might have been affected.
If I feel I can move around tomorrow I am going to go to church. I can't miss the Ephesians study in Sunday School after all.
I'm back. And my back is killing me. The surgery went very well. The trip back was hurtful, but I'm okay.
The scs is working. I don't really know how well so far, but I can feel the tingling more than the pain. I'll be going back on Monday to have the lead removed and discuss getting the permanent version. The upgrade, so to speak.
It's snowing. It hasn't even been that long and it's sticking all over the place. My mother just made it home and she said it is pretty bad out there.
Okay. Here's the news. Tomorrow is the day I go down to Duke for my pre-op appointment. I'll talk to Dr. Pasi about the procedure, ask my questions, get all the information I can, then Friday will be the day.
I've said all this before, and I hate to bore you, but here's a recap. Friday morning, early, I'll have the procedure done. This Trial is where they put leads in my epidural space and connect it to a device known as a spinal cord stimulator. This device will hopefully interfere with the pain that I feel.
Now, I will only have this Trial device for a few days. I will probably have it removed on Monday. But that should give me enough time to know whether it will really helped more or not. 50% or more pain relief is considered success.
If it is successful I will have to heal for at least 2 weeks. Then they can do the final procedure.
Please pray that everything will go well.
And that the doctors will know whether to give me the RF device or the IPG. Right now my parents and I think the RF device will be better for me because it is rechargable (so the battery doesn't have to be replaced every few years) and has better control over the settings (in case my pain goes up or down). But I'll discuss the options with my doctor.
Duke called. They scheduled me for the spinal cord procedure this weekend. They were supposed to call me and talk to me. Now, you might think, so what. You've got your appointment. But...of all the weekends...of the the whole month...or year...they chose this one.
My friends Danielle and Brian are getting married on Saturday. I am playing the piano.
Okay, don't worry. They rescheduled it for January 21st (9 days after my birthday...hint...hint). So this is it. This is the test. From what I've heard (the doctor hasn't given me the final instructions) I'll have to be there on the 20th for pre-op, then they do their thing on the 21st, then I go home for a few days. Try out my new super power, and see if it helps. If it eliminates 50% of the pain, the trial is considered a success. Then they take out the leads from my spine. I have to heal for two weeks. Then I come back and they put in the permanent version.
I've had things stuck into my spine before and it wasn't fun. Please pray that I'll have God's grace to bear it...oh and that it will work too.
In the mean time, I have the wedding. And then my next appointment (the regular kind for medication and good prodding fun) on December 22nd.
Duke called to give us a thumbs up for insurance. That means logistically speaking, all we have to do is schedule with the doctor and OR. We are hoping for sometime in January.
God is so good!
Now we have to pray that this procedure works. It does work for a lot of RSDS patients.
I'm off to Duke again today. It has been a while, I know. Please pray for these three things to be according to God's will:
Also please pray that mother and I would have a safe trip there and back. It takes about three and a half hours to get to Duke from Virginia Beach.
* I've been having more deleterious effects from the medications.
I went to Duke again yesterday. My dad and I got there almost an hour early. We expected to read our books and wait, but I was in and out of the clinic before my appointment started at 2:30. Now that's service.
Anyway, my doctor and I figured out that it was the high level of trileptal (given as an anti-seizure, a bipolar, RSDS, etc. medication) combined with my pain meds that was making me sick. Therefore, less trileptal is a good thing. But we are upping the pain medication.
On the Trial front. I am cleared for take off. Yes, indeed. I am of a sound mind (at least that's what they say) and my insurance has been accepted.
But prayer request. This procedure is very expensive. Pray that it will be handled according to God's will.
So as far as the doctors know, I am not crazy. The psychological tests today took about 2 hours. Some of the questions included:
- Have you heard voices that other people can't hear?
- Do you have uncontrollable urges to hit things or throw things?
- Do you feel like people are watching you when you are alone?
- Are you afraid of being alone?
- Are you afraid of being in public?
There were over 250 more. I am surprised I don't remember anymore of the really good ones. If I think of more I'll add them.
Anyway, all that for their tentative approval to have the trial. When will this happen? I have no idea. My next Duke appointment is June 10.
I suppose I should say that all went well on Thursday. I'm sorry for not saying so earlier.
My doctor and I did not discuss the spinal chord stimulator as I had believed we would. But I have scheduled an appointment that is necessary before the trial of the device. Taking the first step probably means I will have the trial in the near future. Probably after the wedding of some friends of mine.
Also, the trial is what determines whether I will need the IPG (internal battery) or RF (external battery) device. This is nice because it effectively takes the decision out of my hands. A good place to be. My hands are a little shaky.
I leave you with words from three men. The lyrics have been playing over and over on my speakers and in my head. (They are used in the song Made Me Free, music by David Danner.)
~ Isaac Watts
Alas! and did my Savior bleed
And did my Sovereign die?
Would He devote that sacred head
For sinners such as I?
Was it for crimes that I had done
He groaned upon the tree?
Amazing pity! grace unknown!
And love beyond degree!
~ Ralph E. Hudson
At the cross, at the cross where I first saw the light,
And the burden of my heart rolled away,
It was there by faith I received my sight,
And now I am happy all the day!
~ Isaac Watts
But drops of grief can ne’er repay
The debt of love I owe:
Here, Lord, I give my self away
’Tis all that I can do.
~ Philip P. Bliss
Sing, oh sing, of my Redeemer,
With His [precious] blood, He purchased me.
On the cross, He sealed my pardon,
Paid the debt, and made me free.
[Paid the debt and made me free.
Made me free, Made me Free!]
nasty, tricksy doctor made me take even nastier, tricksier medicine.
I was sick all week. I called TWICE. And no call back. You'd think they'd call back to make sure I was still alive.
I just changed my dosage. So I felt much better today. Of course I probably wasn't supposed to, but she should have called me back.
I'll try to write happier posts soon.
My mother and I made it to Duke University's Pain Clinic pretty easily, and the appointment went well. The doctor was very helpful. I will start a new treatment soon, one that has helped many people overcome their pain. After I get pain managment, I will have to have some physical therapy to regain some of the motor control in my foot that I have lost.
This is by no means a conclusion. It is, in fact, just a beginning. I have another appointment at Duke in 4 weeks. I appreaciate all that have prayed for me, and I ask for your continued prayers.
I am planning soon to blog about Reflex Sympathetic Dystrophy (RSD). This is the disease I have that has caused me so much trouble. I hope that I can help educate people a little, to do my part.
I got a call from Duke University's Pain Clinic today. I now have an appointment for March 24, 2004 at 1:00pm!
Praise God! This is once again evidence of God's graciousness inspite of my little faith. I didn't expect to get in until summer.
God is faithful.
Bible Conference is that week. Yahoo Maps says it's about 4h41m to Greenville from Duke. Hmm...A plan is forming...
Joy is right. I've been subdued. I had the radiofrequency treatment January 8. Since then, I've been out of commission. It hasn't been pretty folks. This past Sunday I came home from church after playing the piano for the song service. I meant to take medicine and go back. But I sat down just for a second, and I knew I wouldn't be able to move again.
I am feeling a little better. Generally, if I don't move I don't feel too bad. And I've had a chance to work on some music and write some poetry and of course work on my novel. So there are benefits to being still. Especially the spiritual benefits. Beyond my personal study, I have been able to read some really good papers on some theological issues of today.
I just wanted to let you know that I am okay, and to explain my quietness.
"Grace and peace be multiplied to you in the knowledge of God and of Jesus our Lord;"