Ahhh pain management doctors. They’re a special breed, aren’t they? You really have to laugh. I did.
I saw my pain management doctor today, second consult. His first idea was a ketamine infusion which I just could not manage logistically. I had no one to care for my teenage children while I spent 5-7 days in hospital. So I didn’t have the procedure.
Ok, so today we discussed a spinal cord stimulator, which he said was a bad idea, for the exact same reasons my rheumatologist said it was a bad idea. High infection risk in an immunosuppressed patient, and no more MRIs while the implant is in my body.
So what’s next?
Nothing. He stares blankly at me. I think he expected me to just leave at this point. But no. I didn’t drive for 40 minutes for a 5 minute audience and to be told he can do nothing. He’s going to earn his consult fee.
Really? I say. Nothing at all?
I tell him that I can’t walk 50 metres without needing to sit down and rest.
He said ‘But you’re not having falls’.
I said I stop and rest so that I don’t fall. If I try to continue I lose balance, feel nauseous and dizzy and sometimes fall. So I stop, and sit. Because hitting the ground hurts, and it’s also embarrassing in a public place. And you’d be surprised how many people don’t help you up.
I showed him my SPECT-CT with the glowing L3/L4 bilaterally and the totally destroyed SI joints.
‘Do they hurt? He asks.
My turn to stare blankly.
Do they hurt. Mind. Blown.
Yes. I say. Yes, they do hurt. I am here primarily for spinal pain, I remind him.
Ok, let me examine you.
He pokes and prods various places. Yes bit tender, no nothing there, little bit.
I try to explain to him that the pain is inside. It’s in my bones. It’s not in my skin or my muscles. His poking and prodding doesn’t elicit pain in my spine. It’s always there, and it’s hard to track exactly where it comes from. Because if I bend different ways, different areas spike, and I get sharp stabs. Whereas ‘normal’ is constant lower back ache. At 6 or a 7. Not pain that can be ignored. It’s always there. But its INSIDE. Not my skin. My skin is not tender.
He asks me if I exercise. I tell him yes. As much as possible. Having said that, I haven’t been to the gym in a week, because it’s been a particularly bad week. And so the gym has gotten side lined, because I can generally only do one thing a day. And I’ve had to choose other things. But generally speaking, I exercise regularly, ride a recumbent bike, walk a treadmill, and do a Core class which (surprisingly enough) works the core muscles, to keep my spine supported, and yoga based classes as well.
He tells me I best just keep exercising.
Ok. What about an ablation? I ask.
Oh, ok, he could do one of those. But he only does one side at a time. So I’ll have to come back four times to get all the hot spots treated.
He says sometimes there’s a lot of pain post procedure and he doesn’t want to put his patients through that pain.
Again I stare blankly.
You have GOT to be shitting me. What the actual f….unk. I’m in constant pain now. The post procedure pain is NOT going to be worse than the daily pain. And even if it were, its only for a day or two. That makes no sense. None.
Let me see, what other reason could there be to make me come back FOUR times, when one procedure will do. Oh yes! He gets to charge me FOUR times! And make FOUR times the money. And I have to pay four hospital fees, and four anesthetists fees. How silly of me!
And there must be at least four weeks between ablations, to allow all that post-op tenderness to abate. So, in 20 weeks, he might almost have all my red hot spinal joints treated. Never mind the ‘moderate’ ones.
Erm. I’m not feeling really excited about this course of action. It’s going to take too long and cost too much. I don’t believe that my pain is his primary consideration here…
What is it with pain management doctors?
He starts filling out the forms.
And starts questioning my targin and oxynorm usage. Yes, I agree, its high. But I am tapering off prednisone, and without the oxycodone, I’d be completely bedridden. Life would probably not be worth living.
He suggests we switch to methadone. I ask him what the benefits of methadone are. He said it is longer acting. I said I have tried multiple opioids and oxycodone has proven to have the least side effects. I’m not convinced that now is a good time to start changing my pain relief regime, which is working relatively well, given that I am tapering down on prednisone.
Then I asked him about surgery.
He said, no way, you’re not in enough pain to risk that.
Not even going to bother be gobsmacked this time. I’m just laughing (internally) by this point.
I’m not in enough pain.
Excuse me, sir, how the fark would you know how much pain I’m in?
I knew that’s what he was thinking. Back to the old, I am relatively young, look very healthy, smile a lot (just my personality, folks. Hard to change) and while I’m overweight, I’m not obese. Plus I admit to going to gym. I have good posture, and while there is a nice healthy layer of fat (and I do mean healthy) I clearly have decent muscle tone and strength.
Clearly I am not in that much pain.
I told him again that my skin isn’t tender. My muscles are not tender. My joints in my spine are hurt. It’s like I have knives stabbing into my spine at various levels. I’m just used to that. Poking my skin has NO effect on the pain inside my body.
Back to him staring blankly.
There were a lot of blank stares today.
He continues filling out the forms. I ask him what the wait on the procedure is. He says he doesn’t know, his receptionist arranges all of that. Ok. Fine.
I let him finish the forms.
I know he doesn’t believe I’m in pain. He finishes the forms, gets me to sign them and actually said ‘I don’t want to do an ablation for no reason. So think careful about this.’
When he did his physical exam, he moved my legs and rotated them to see what my hip range of motion was like. I told him when it hurt, in my spine and in my hips. But I think he expected screams, and whimpers and tears.
I don’t do tears. You want tears? Break my heart. Or hurt someone I love. Lots of tears then.
You’re not going to get tears from physical pain. Or not from physical pain that I’ve been living with for about five years. Not going to happen. And try as I might I can’t be someone else. And I shouldn’t have to cry crocodile tears to get him to believe me. If I say it hurts and it’s a 7.5 then he should accept that it hurts and it’s a 7.5.
He took my BP. It was 165/95. My resting pulse was 98. Almost tachycardic. Just sitting there. He said I had white coat syndrome. Yep, that’s it. Because I don’t spend much time in a clinical environment. I’m clearly stressed and that is elevating my BP and my pulse rate. That makes perfect sense…lol.
Or maybe I was in a lot of pain. It just doesn’t show on my face. But it shows in my vital signs.
I saw his waiting room. He was running late. He had four other patients out there. All over 60, or looked it. Some in wheelchairs. Some using walkers. All with a support person. All looking tearful and moaning and letting out deep signs. I overheard the some conversations.
I look nothing like his typical patient. I behave nothing like his typical patient. And this is my problem across the board.
One day they will invent technology to allow another person to experience what your nerve endings are sending to your brain. And then people will understand. I can smile and laugh and joke when I’m in bad pain. I have to. I refuse to spend my life miserable. Flat out refuse.
I have days when I can’t help but let it get me down. I’ll let myself wallow sometimes. But not for long. Never for long.
So I’ll go to gym. And I’ll think about whether I want to bother with the ablation. Ketamine is out until my BP is much lower.
On the upside, I have eliminated the spinal cord stimulator as an option. So I can go back to my first surgeon and ask for the fusion surgery. If I choose. He might agree.
But I’m seeing a neurosurgeon tomorrow, for the same reason. I’ll see what he has to say first.
And I’ll continue my research on how to find the perfect wheelchair. Because crutches don’t help when your whole body is flaring. And a walker isn’t going to do much either. Those things are all more for balance that real mobility assistance. And fatigue is a huge factor. I don’t know if the pain were less, if the fatigue would become less. Or if the head buzz and balance problems and dizziness and nausea would remain. Those might be a function of pain. Or they might have another cause entirely. Maybe the Ear, Nose and Throat guy can answer that. That’s tomorrow as well.
So I should get lots of answers tomorrow. Let’s hope they’re not all ‘No’.