I’m just going to condense this, because really, he said lots of nice words, but they’re just words. They were designed to make me feel better, but they didn’t. He was, however an excellent doctor, with an excellent bedside manner.
Firstly, we went through all the options for spinal pain. He looked at my MRIs and told me that surgery, fusion surgery, purely for pain, had a very low success rate. It was more successful for nerve pain, entrapped nerves, sciatic pain. I only have that intermittently. In his experience, he has found from feedback from his patients:
20% thought it wasn’t worth doing, because they felt no different.
10% wished they hadn’t done it because they had MORE pain after surgery.
20% had some improvement, but not enough to warrant going through the pain of surgery.
And 50% had some improvement and were glad they had the surgery.
A few people were pain free. Most who had improvement had around 60-70% improvement.
I told him I gave up on pain free years and years ago. I just want to be able to walk more than 50 metres.
And then he told me I looked reasonably fit.
And there we have it folks.
The preconceived opinion, based on the way I look.
I’ll be honest, part of me switched off right there, despite the fact that he was a lovely man, with an excellent manner.
He continued that he needed a very good reason to do surgery for pure back pain. I said pain severe enough so that I felt like I had several screwdrivers permanently lodged in my spine were good enough reason for me.
I wasn’t joking.
He then explained that the odds of success weren’t good enough for him to take on. Read: you won’t look good on my stats. Yes, I’m pretty cynical now.
We discussed spinal cortisone shots, that they helped considerably, but only for about two weeks.
Radiofrequency ablation, been there, done that. The SI joint one worked great, the other one I suspect never actually happened, because I came out of that theatre with worse back pain and a partially dislocated hip. And of course we talked about exercise and physical therapy. Done, done, done and done.
Then he asked if anyone had discussed a spinal cord stimulator with me. I said yes, my previous pain management doctor. I then explained why I will never see that doctor again. I don’t think my story went over too well. (It had to do with being anesthetised when I wasn’t expecting to be made unconcious and waking up with lots of unexplained bruises and the afforementioned displaced hip. And excruciating pain.)
But a spinal cord stimulator was proposed to me, and largely vetoed by my rheumatologist as firstly a huge infection risk in an immunosuppressed patient, and secondly once you have it implanted, you can’t have any more MRIs. Big problem for someone with active inflammatory arthritis.
But my surgeon told me he wasn’t prepared to try surgery unless I tried the spinal cord simulator first.
Then if that doesn’t work, come back to him.
He also said he would send me for a SPECT-CT scan which might show him more pathology and perhaps give him a reason to risk surgery. I’m having that scan in two days.
Don’t get me wrong. I don’t want surgery. But I can’t deal with this pain anymore. I really can’t. It’s finally getting to the point where I am becoming someone else. Depressed, angry and having suicidal thoughts at times. I hate everything, and everything is pain. No one seems to give a toss, or understand the degree of pain that I’m talking about. Everything is a circular argument…I can’t do thing A until I’ve done thing B which depends on thing C, but first I have to get thing A…and around and around it goes.
And then I snap out of it and find that bizarre optimistic streak again. For a while.
He did a physical exam. Discovered my right shoulder and neck are problematic, but not horribly. I told him I’ve already had surgery on that shoulder, and that’s why I don’t have as good a range of motion. I told him I expected that, and I was happy with the surgery result. I had been warned that because I have active inflammatory disease there is only so much surgery could do.
He said that was part of his point as well.
I told him about the icepick in my temple, because he asked why I kept squinting my right eye (because I feel like I have an icepick in my temple and I can’t focus my right eye sometimes). He asked if my face is numb (sometimes) and suggested I probably have trigeminal neuralgia. Apparently there’s a nerve that runs down your face that can cause that icepick sensation. Never heard of it. I’ll google later.
He tested my hand strength and found that I have significant muscle wastage on the outer side of both hands. I told him that the numbness and pins and needles affect my whole hand, but more often the outside of my hands, the little finger and the ring finger.
He said this was caused by compressed nerves in my elbows (Cubital Tunnel Syndrome), and it would normally need surgery to release those nerves. But with the amount of muscle wastage there, he can see that the nerves have been compressed for a very long time. Now I have very obvious muscle wastage and loss of the muscle function in my hands which is NOT reversible, so he doubts that surgery would be successful and that the nerve damage is permanent, as is the loss of function in my hands. And there I was thinking it was ‘just’ Rheumatoid Arthritis. I should know better.
Once again, something I have been telling my doctors for years. I have painful pins and needles and numbness in my hands and feet every day. Every. Day. Again, not a fan of surgery. But not a fan of permanent nerve damage either and muscle wastage and loss of hand function.
I can consult an elbow surgeon for another opinion if I choose. I wonder what an elbow surgeon is called? I believe that my wonderful shoulder surgeon also does elbows. Maybe I’ll go see her. Maybe I won’t bother. Seems a lot of effort for something that probably can’t be repaired now.
The pins and needles in my feet are probably compressed nerves in my lumbar spine as well. Bone spurs, stenosis. He feels it’s not bad enough for surgery. I only have sciatic nerve pain sometimes. Tends to come and go. He told me if that becomes permanent, to come back. Ok.
He feels a lot of my pain is coming from my hips. He doesn’t do hips. I agree, a lot of my pain IS coming from my hips, but I was unsure as to whether it was actually referred pain from my spine. He says no. He says I have bad hips. I’ve known this for a few years. It’s probably time to have some hip x-rays. Haven’t had any of those for a few years now. Hell, why not ask for an MRI. I’ve never had a hip MRI. I’ll ask my pain management doctor for some scans. When I see him about the spinal cord stimulator. My appointment with him is in two weeks.
Here’s a neat little video on spinal cord stimulators. Looks pretty simple. My problem with this is, best case, they are looking at a 50% improvement. 50% is considered a complete success. Sure its minimally invasive, but I’d be trading no biologicals and no MRIs for a possible 50% improvement.
That doesn’t sound like a good deal to me.
I’d rather risk a more invasive surgery that some people get 65% or more benefit from. But it’s not my decision. First I have to consider the spinal cord stimulator. Then my surgeon will reconsider surgery.
It is my option, however, to get a second opinion. Which is what I’m going to do. My GP won’t like it. But he doesn’t have to live in this body.
Oh and I’ll have to wait. And wait. And wait some more. And in the meantime…nothing.
In the meantime, I’ll wait for my rheumatologist to call me back. I’ll go see my GP about getting a referral to my shoulder surgeon, and ask her if she can give me the function in my little, and ring fingers back. Or maybe I don’t care? I always thought they didn’t work cos, you know, like, I have RA.
Apparently this could have been prevented. That’s minorly annoying. The pins and needles and numbness are very annoying, the pain and the fact that I can’t always move those fingers is majorly annoying, so I think I’ll ask for a referral. She’s definately a four month wait, at least. But what the hell. It’ll be nice to see her again.
In the meantime, I’ll keep taking myself off to the gym to keep the muscles I do have working. What else can I do?