I had been looking forward to this morning for weeks. A steroid injection into my spine! My recent MRI showed facet joint arthritis and torn discs at L3/4, L4/5 and L5/SI. It also showed nerve impingement, particularly on the left side.
What does this mean? Lots of lower back pain. The nerve impingement causes pins and needles in my feet (and not the tickley kind). I also get shooting pains down my legs, and through my buttocks. My left leg is particularly bad. At times I can’t bear weight on it at all, which is why I finally bought a pair of Canadian Crutches. I have even fallen, when I tried to put my weight on my left leg, and it suddenly gave way. Shooting pain. Fall down. Land hard. More pain! Falling down on tender joints hurts…and it’s quite the embarrassing moment at the supermarket.
Actually, this MRI is not that recent. It was done on the 21 August 2013. Five months ago. I showed the report to my rheumy, and asked if there were any treatment to help me with the pain. She said a steroid injection, however, I have already had too many steroid injections, so she wasn’t going to send me for one. She asked me to be patient and give the Enbrel time to work.
I accepted this, although I was pretty sure the MRI report indicated that the pain was potentially coming from damage to my spine as much as from inflammation. Still, she’s the expert.
But I couldn’t help myself. I asked my usual GP about it. He also said a steroid injection, but he wasn’t keen to send me for one, because I have had so many. And there is a limit to how many steroid injections you can have in your lifetime. I have had a few into my SI joint, and one into my L4 facet joint. It gave me some relief, but only about 6 week’s worth. His feeling was that it wasn’t worth the risk of introducing more steroids into my body, for a few weeks relief.
Again I accepted this, but as I mulled over it more, and as the pain continued, I started changing my mind. The lower back pain is like a knife…no, several knives, inserted into my spine. From very low down in my buttocks (SI joint) up to middle lumbar. It is constant, stabbing and some days it’s so severe walking even a few feet is almost impossible. I don’t even make it to the couch because its too far from the bathroom.
Lower back pain has been the reason my narcotic pain relief use has skyrocketed. And has been the limiting feature for most of the things I want to do. Things like walking.
Then I ran into an old friend, who had neck issues and had had a radiofrequency nerve ablation. Essentially the nerves in his neck were severed, so that he can no longer feel the pain of degenerative disk disease in his cervical spine. The nerves regenerate within 6 months to 2 years, but the relief is complete, and can last up to two years.
Awesome! I want that! Why can’t I have that? Why hasn’t anyone suggested that to me?
Three months later, no improvement. I started thinking about the MRI again. And I started to suspect that if I had that MRI result but NO diagnosis of inflammatory arthritis, then the doctors would be looking at other treatment options. Options for pain relief. But when you have Rheumatoid arthritis, and spondylitis and a bunch of other things the answer is always ‘it’s the arthritis. Be patient, wait for the drugs to work’.
I can understand this. It’s natural. I have seen it over and over again.
But sometimes there is more that can be done, and why shouldn’t it be? So I decided to fight the good fight once again, and push for the treatment option I wanted.
So I made an appointment with my GP. Unfortunately he is injured, so I had to see another GP, whom I have seen before and trust.
And I asked him about the radiofrequency ablation. And I pretty much begged for the steroid injection.
So he referred me to the best radiologist in town. He is the go-to guy for steroid injections, especially with spinal issues. All the surgeons use him. He knows his stuff.
Yes, please! Let me see him! (small voice) And why didn’t anyone send me to him before? Six months of bad pain here…
As is always the case with the specialist guys, there was a wait. But today I saw him.
And I am now filled with hope and relief!
He told me latest studies show that there is no problem with repeated steroid injections directly into the synovium, as previously thought. He told me he had several patients who came regularly to ‘tame down’ their areas of most severe pain. Many patients with rheumatoid arthritis who came 3 or 4 times per year. As needed.
He looked at my MRI and said that while he understood that I would love to have all of my lumbar spine treated today, he couldn’t do that. He wanted to treat one area at a time, so that we could isolate which areas are causing the worst pain.
Makes sense. Bummer.
So he looked with ultrasound and decided that my SI joints looked the worst. Very inflamed. So he injected a double dose of celestone into each SI joint. Which, in itself, was amazing. The last time I had my SI joints injected (several years ago now) I was told they could only do one at a time. Which sounded ridiculous at the time, and my doctor today agreed. He and his assistant could see the inflammation, and what he saw supported a diagnosis of Ankylosing spondylitis, which has always been suspected. (SI joint inflammation being the hallmark of that disease).
He also could see arthropy in my lower six facet joints – the MRI only covered the lower three. I am to come back in six weeks and can have all my facet joints injected in one session. Quickly, simple procedure.
I need a scan on my neck to look at my cervical spine, and depending what that shows, I can return in another six weeks and get those treated. My cervical spine *feels* very much the same as my lumbar spine, so I am fairly confident there will be something treatable there. The doctor was confident from my symptoms that there will be degenerative disk disease, inflammation, maybe some torn discs. Just like my lumbar spine. It’s funny how finding these things is good news now. It’s not that it’s good news…it’s that it’s *treatable* and I am filled with hope that in a few months I might have a lot less pain in my spine.
It all depends how long the shots last for. Could be a few weeks. Could be a few months. Imagine if they all overlapped, and my whole spine DIDN’T hurt! How cool would that be!
He was an excellent doctor. Happy to explore with the ultrasound and discuss my condition and answer my questions. I asked him about what I’d been told previously, about having had too many cortisone injections already. He agreed that it was a common misconception with many doctors that there was a limit to the amount of injections a patient could have. He said this was true of injecting a tendon, and that he didn’t inject tendons because ultimately it made things worse.
But an injection into the synovium was an excellent therapy to improve quality of life.
He said “With disease like yours, the goal is pain relief. The goal is to improve your quality of life. We can significantly improve your quality of life, and your daily function level. And the latest studies show no evidence that steroid injections will degrade your joints any more than they already are.”
Quality of life. A phrase I’ve been thinking much about lately.
Really, that’s what it’s all about. I know I can’t be cured. I know remission is very unlikely at this stage of the game (but far from impossible!). But reducing the amount of pain and the amount of pain in individual joints is a worthy goal!
I loved him for his approach. His attitude. For remembering I am a person in pain. And that for me, lowering my pain levels is the most important thing. That the risks and benefits are mine to weigh, given expert advice.
Don’t get me wrong, my other doctors are wonderful. But when you have been seeing a doctor for a while, they start to forget. That you are a person in pain. They get wrapped up in wanting to cure your disease, and waiting for the drugs to work’. Big picture, yes, fine. But you just want the pain to go away. Even if only for a little while. And somewhere along the line the ‘person’ gets reduced to a ‘complicated case’ and becomes a really interesting combination of symptoms. Perhaps it’s easier to deal with that way, for them. My doctors are caring compassionate people. I know they care.
My rheumy insists on the full six months to see if a drug regime will give me any benefit. That’s a long, long time to be in daily severe pain. And pain has a way of eroding hope.
So. In the meantime, if there are treatments that can reduce my daily pain, then why not?
Why not indeed.
Tonight I am flaring all over. For once my swelling is impressive and my joints are even red. Particularly my hands. And my knees. But most of my joints are firing up. Its 9pm now…and I will lie down shortly and rest, if not sleep.
But at least my SI joints don’t hurt J