I had my follow up appointment today with pain management. I was to tell them how I did with the pain pump trial and give them a percentage of how much better I was feeling after the injection of a hefty dose of Dilaudid into my lower back.
I know what you're thinking: But your pain is in your neck, isn't it?
Yes. It is. The highest level they can inject the medicine into the spinal fluid is L2 or L3. I don't know how familiar you are with the spine, but there are a total of 29 vertebrae that make up the spine. There are 5 vertebrae in the neck (cervical), and this is where MOST of my pain is. Then you have 12 vertebrae in the thoracic spine (top-mid back), 5 in the lumbar (low back) and 5 in the sacral (tailbone area). I have bulging discs at the top of my neck (C2-3 and C3-4). There is also a herniated disc that has been there for at least 5 years at T3-4 but the surgery is too risky so I just live with the pain from that one.
So with the pain pump trial they inject medicine directly into the spinal fluid, but for some reason, they CANNOT place it any higher than the lumbar spine. There are a total of about 18 or so vertebrae between where the medicine was placed, and where the bulk of my pain is. And yet, they still believed it would be worth it to see if I could get relief. Well, the bottom line is this. There was NO change. No improvement. No relief. At all. In fact, I wound up with a bad headache and pain down my arm, not to mention beginning symptoms of withdrawal because I had to be off of my pain pill before the procedure.
When I talked to the doctor today, and expressed how I felt no change at all, he said that either the pain pump would not work for me because the pain was muscular/joint-related, OR the medicine just wasn't able to get up high enough to reach where my pain is the worst. So, I COULD possibly proceed and have the pain pump implanted in the hopes that when the catheter is in the right place and releasing medicine directly to the affected areas in my neck, I could maybe get relief. But even he thought that was a bad idea, because I responded so poorly to the trial.
Where does that leave me? There's one option left (outside of just continuing to suffer, addicted to pain medicine). I can try the trial for the neuro-stimulator. I have written about this before. I chose to do the pain pump trial first, because my doctor said they have perfected the pain pumps and while the neuro-stimulators have come a long way, they aren't as widely used and studied as the pain pumps. And now, that is basically what he is recommending. Do the trial and see if I can get relief from that, before giving up hope.
I asked him what difference it would make, if the pain pump trial was ineffective. He explained that with the neuro-stimulator, they actually inject these wires into my neck. These wires are connected to a battery pack thing that transmits electronic pulses that can (apparently?) help with pain. Because my pain is up in my neck, he thinks that maybe this will offer relief. Everything really is just trial and error. There's no easy answer. So, because I don't know what else to do, I have this trial scheduled for April 30th. It is a week long trial-they send me home with these wires hanging out of my neck and I am not clear if I administer the pulses or if it is timed. But I wear that for a week, and then I go back to have the wires removed and tell them if I had any relief. IF, and that's a big IF, I get relief, they will schedule surgery.
The doctor said he was hopeful. I told him he would have to be hopeful for the both of us, because I just couldn't feel it in the moment. By the time I got to my car, I just started feeling this weight begin to press down on me.
I couldn't shake it. I dropped off my prescription (which apparently has been delayed surprise surprise due to insurance issues) and went to get myself my favorite tea from my favorite place, QuikTrip. I had to fight to keep it together in the store because that weight just would not let up. It kept pressing and I knew I was going to lose it. I've felt the breakdown coming since last night.
And this is what brings me back to how I started this post. I don't know how people do it without God. I don't know, mentally, how people can cope. I just don't get it. Because here is what happened. As soon as I got in my car, the radio started playing a song called "Oh My Soul" by Casting Crowns. The tears that I had been fighting back just started flowing. I just closed my eyes and listened to the words, all the while, tears were streaming down my cheeks. The despair didn't go away. The frustration didn't suddenly disappear. But that crushing weight I was feeling lightened a little. I believe in God and I believe that He loves me and that He sees me, and that He suffers as I suffer. He sees my pain and he wants to comfort me. He wants me to lean on him and know that I am not strong enough, but He is. And He communicates this to me through music over and over and over, and usually exactly when I need it, before despair overwhelms me completely.
Maybe you're struggling right now. Whatever it is, take a few moments to close your eyes and listen to this song, or read the lyrics while you listen. Do I feel suddenly happy? No. I don't. I feel much the same. Except that my load was lightened just a little and I know that I can put my hope and trust in One who loves me more than I could imagine.
Oh, my soul
Oh, how you worry
Oh, how you're weary, from fearing you lost control
This was the one thing, you didn't see coming
And no one would blame you, though
If you cried in private
If you tried to hide it away, so no one knows
No one will see, if you stop believing
Oh, my soul
You are not alone
There's a place where fear has to face the God you know
One more day, He will make a way
Let Him show you how, you can lay this down
'Cause you're not alone
Here and now
You can be honest
I won't try to promise that someday it all works out
'Cause this is the valley
And even now, He is breathing on your dry bones
And there will be dancing
There will be beauty where beauty was ash and stone
This much I know
Oh, my soul
You are not alone
There's a place where fear has to face the God you know
One more day, He will make a way
Let Him show you how, you can lay this down
I'm not strong enough, I can't take anymore
(You can lay it down, you can lay it down)
And my shipwrecked faith will never get me to shore
(You can lay it down, you can lay it down)
Can He find me here
Can He keep me from going under
Oh, my soul
You're not alone
There's a place where fear has to face the God you know
One more day, He will make a way
Let Him show you how, you can lay this down
'Cause you're not alone
Oh, my soul, you're not alone
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