This morning I woke up with very little back pain. A “4”. I know its there, but I can ignore it and can even forget it if I’m involved in something.
This is unbelievable.
This the first time in many, many years that I haven’t woken up with severe, sharp, tearing pain in my lumbar spine.
I rolled over without assistance. I normally can’t roll over in bed. Its not possible. This morning I rolled over, and sat up. Then I stood up. Still waiting for a hammer hit of pain in my spine. It didn’t come.
Yesterday I had my diagnostic injections. A medial branch block from L3 to L5. Just some anesthetic and steroid injected into those joints, to see if that’s where most of the pain is coming from. I’ve already had my SI joints ablated.
I have been
arguing… debating… discussing
requesting that all my lower levels be ablated for literally years. Every pain
management doctor I’ve gone to (three of them) have all been obsessed with
finding the ONE place that’s causing the most severe pain.
That’s not possible with me. There are multiple joints causing my spine pain. I’ve had an MRI that is a total mess. My neurosurgeon told me bluntly he just doesn’t see spines this degraded in someone so young (Im 49 now, but he told me this at 47, and my spine has been severely degenerated since my early 40s. That’s very rare. I believe its due to my rare bone disease, I have super-dense bones. The only other person I’ve ever met with bones even close to as dense as mine, also has a severely degenerated spine, so I make that connection. No doctor will listen or give even a fleeting thought to cause, however. Which is annoying. But they’re always worried about liability or incapable or unwilling to look at the bigger picture…i.e my WHOLE body, not just the little piece they are tasked with ‘fixing’ today.)
My MRI shows marked facet joint arthritis at all lumbar levels, worst from L3 downt o L5. I have disk bulges at L1 and L2, and herniated disks at L3 and L4, L5 has definite neural compromise on the left hand side, compressing my sciatic nerve causing excruciating pain and complete weakness of my calf muscle. Partial paralysis of my leg. All disks are compressed an dessicated. I have spondylolisthesis at L3/L4, which is currently only grade one, but still causing a ‘significant’ spinal stenosis. I have disk fragments floating around my spinal canal, and they push on other nerves, so far they’ve always moved off again. Sometimes I lose bladder control, so far no problems with bowel control.
It’s pretty bad. I need surgery. All my doctors know that, but I have PTSD from my hysterectomy surgery, where my surgeon, three other doctors, twelve nurses and one physiotherapy all ignored my agony, and I bled out, in the hospital. I woke from that anesthetic in agony, and for five days not one person in that hospital helped me. So lets just say I have TRUST issues.
Surgery is out. Pain relief? Everything from L3 down is a serious problem.
But yesterday, after a year of seeing my pain management
begging asking for help, he did the blocks. And my pain is finally much reduced.
I have an aching back. Probably like most people have an aching back sometimes. It could be inflammatory pain, because have Ankylosing spondylitis as well. If it improves as I get moving, its likely inflammatory. If it gets worse as I get moving, its likely mechanical. Simple rule of thumb that doctors use.
Still. I’m thrilled. I cried tears of joy this morning. Lumbar spine pain is always dismiseed. “Everyne has back pain”. I’ve had doctors belittle and ridicule me and call me a hypochondriac. I’ve had fellow arthritis patients play “my pain is worse than your pain”. I’ve had healthy friends give me the eye roll.
Back pain can be severe. It can be crippling. Yes, most people just have mild pain that will resolve. Not me. I have a lot of pathology and in my case, all of it causes pain. Some of it causes paralysis that only surgery could potentially resolve. The medial branch blocks have proved the pain.
There were complications, however. The procedure (I’ve had it donw three times now) is usually done under twilight sedation. I have terrible PTSD around full anesthetic, and any kind of sedation. I have been working hard on it. I need to have these procedures. But yesterday, I had to be tubed and put under general. I woke up with all the tubes still in my throat and the nasal tube hurting my nose. The sensation of pain in my nose is what woke me. I was confused and nauseous and almost vomited. I was in the PACU, being monitored. I remembered that I’d been connected to all the anesthesia montoring equipment inside the OR…then nothing.
My anesthetist knew about my PTSD, but I think he thought I was afraid of waking up, and feeling the pain of the injections. I tried explaining that to him, but they ALWAYS think a woman is afraid of pain. I’ve had these injections done under local, wide awake. They sting a bit, but they aren’t painful in my book.
So he decided to put me under a full anesthetic. So that I wouldn’t wake up. He did what he thought best. I realised as he was prepping me that that’s what was happening. I know the difference between IV sedation prep and a general. The put the dots on, they started injecting sedatives into my IV, they turned on the monitoring equipment (normally not necessary for IV sedation) and then I was out.
I woke up tubed. And I panicked. I wasn’t supposed to be anesthetised. This was essentially my worst fear.
I have learned a lot of meditation techniques. Mindfulness. I was able to calm my panic. I looked at the clock, and realised I’d been out for an hour and 15 minutes. Definitely a full general.
My anaesthetist checked on me himself, several times. He believed he’d done the best thing for me. And maybe he did. I’m not angry. But I re-experienced the trauma. It was pretty terrible for a few minutes. But I worked through it. I woke up basically fine…some nausea, dizziness and the sore throat of having the tubes down your throat. My nurse was very attentive.
I believe that’s what happened. Which brings up issues of informed consent. Of, once again, a doctor deciding he knew what was best for me, when he’d only known me for ten minutes. I have to admit, he may have been right. I AM fine.
Another possibility is that there were complications with twilight sedation. If you lose your airway during a procedure for any reason, they’ll have to tube and monitor you. Maybe. I remember them prepping me for a general though. But it really doesn’t matter. I’m not going to turn a positive – I made it through a general anesthetic!!! Into a negative – I wasn’t informed.
I choose whether this experience hurts or helps me. I choose help. I choose to get better. I choose to see the positive. I choose to trust.
This IS a positive thing. I wouldn’t have consented to a general, out of sheer terror. But now I have had one. Perhaps I won’t be as afraid next time.
So ultimately, it was a good experience, after the trauma. Even with the panic attack when I was fully tubed, I got myself through it. I can now tell myself that I an manage a general anaesthetic. With the right trusted people in place, I can maybe face surgery one day. That would be a huge step forward. I have to keep telling myself that. Its not easy for me, and my PTSD is NOT suddenly magically better. But I can use yesterday’s experience as a positive step towards beating my PTSD. A very large step.
I have a follow up in two weeks. It was supposed to be one week, so I’m going to phone and ask for that to be brought forward to one week. After the follow-up I can have a radiofrequency ablation at from L3 down, and this pain relief should be semi-permanent. As in last 6 months to 2 years! That would be bliss. I want this done as soon as is humanly possible. The medial branch blog will last hours to days. Tomorrow at best. And the searing, unbearable pain will be back. I don’t want to have that pain any longer than I need to. Now that I know there is a way to bring it down from and 8-9 to a 4.
The most important thing though is I finally have a pain management doctor who now knows where most of my pain is coming from. It took a couple of years. Years of agony. But I’m there. Or I should be. I’ve been let down too often to fully trust. But the outlook is good. Very good.