This morning I really, really did not want to see my pain management doctor. I did a lot yesterday…pushed through a whole lot of pain to hang some blinds. I was proud. And happy. But this morning I ached all over, particularly my shoulders. Both shoulders are bad, but my right one has been operated on, and my surgeon told me “no overhead work, ever”. But sometimes I just have to reach up.
Anyway, I was sore. It’s a long drive. I’ve been seeing him for eight months and he’s achieved NOTHING. But…he is a nice doctor. He is respectful. He is caring. He’s just not particularly communicative.
So I decided to go. Because the walk from the carpark is more than 20 metres, I took my walker. I think the sight of that made him pay a little more attention.
This is how it goes with pain management doctors: if you show pain, wince, cry, complain of severe pain, and are female, they generally decide you’re catastrophising. If you are pleasant, polite, smile a lot and admit to exercising and working they decide your pain is not severe. It’s a very fine line….to make them believe you, without being seen as a ‘catastrophiser’.
I am not now, nor have I ever been, a catastrophiser. It is not in my nature. I have met people who are, my sister for one. My pseudo sister for another. My mother. And many of my friends. Or ex-friends. I do not like it when people see me as a catastrophiser. I will invariably get the wrong treatment.
So when I walkered in, he made room and guided me to a chair, which I appreciated. He asked me if the walker was new, I said no, I always need it if I need to walk further than 20 metres. Previously I’ve been dropped off, so I didn’t need to walk far.
He nodded. And asked me to once again explain where my worst pain is. But I do think perhaps this time he believed the severity of the pain I have been describing a little more.
I told him again, that my lumbar spine is severe pain, that the pain goes down both legs, that my left leg is partially paralysed, and I have numbness down the outside of the leg, and foot. I have no ankle reflex. The S1 nerve root compression is complete and my gastrocnemius muscle has no function. I cannot push off when I walk, therefore I have an obvious and permanent limp. I’m told this is very rare, but given that most doctors haven’t believed me, perhaps its just ignored very often, rather than truly rare.
He tested my reflexes and saw that I truly have no ankle reflex. Hmmmm. He then asked me to stand and examined my spine, poked in a few places and asked me where it hurt most.
He then reviewed the file and asked if I would like to try a radiofrequency ablation. I told him I’ve had some already, by a different pain management doctor, with varying success. He asked if it was my SI joint that was injected, and I answered honestly that I didn’t know. My previous pain management doctor didn’t share such information. Which I found offensive, because I am very capable of looking at a diagram and understanding which nerves he’s treating.
Anyway, back to the point. My pain management doctor explained that he felt that the majority of my pain is coming from my sacroiliac (SI) joint, and that he had a lot of success with radiofrequncy ablation. That this is where they insert a needle into the SI joint, and burn all the sensory nerves through the entire SI joint, after which they would no longer be able to signal pain, and hence I would no longer feel the pain. If it was successful, he would then do the other side, and in further perhaps fuse the SI joint via surgery.
Surgery. NO-go for me. Not because I’m afraid of surgery, I’m rather a champion of recovering and bouncing back from surgery. But anesthetic. My fear is waking up from anesthetic and being totally at the mercy of nurses and doctors who will not listen and who will leave me in agony for five days and almost kill me. When I reminded him of this he was extremely caring. He agreed that I could have the procedure with no anesthetic or sedation. She said the needles might hurt a little, but it would be manageable. He remembered how terrified I was last time, the PTSD from my hysterectomy surgery.
Anyway, long story short, I agreed to try the ablation. I’m not scared of the procedure, I’ve had a few of them.
The SI joint makes sense to me as being the source of the worst pain, because I have ankylosing spondylitis. I have grade 2 sacrolilitis bilaterally, and my SI joint is the only place where I have erosions on x-ray. (Admittedly I haven’t had x-rays in years). As I’ve tapered prednisone, my spinal pain has gotten worse, so it makes sense to me that its, at least in part, inflammatory pain. But I also have spondylosis and degenerated discs at every lumbar level. The L5/S1 disc is fragmented and definitely impinging on the nerve root. It has caused the partial paralysis of my left leg, and sciatic pain on my left side. My right side is also painful, right now the pain on the right is worse than the left. But there is no muscle weakness or numbness on the right. Just pain. Just.
Basically there is a whole lot wrong with my lumbar spine, and its not normal for someone of my age, and in fact most 80 year olds have better spines than I do.
I do believe that my SI joint is a big part of the pain, because I often get severe pain in my hips. X-rays of my hips show only moderate arthritis in my hips, so the pain is likely referred from my SI joint. I’m told hip pain is commonly referred from the SI joint, when there is severe SI joint dysfunction. Also common is pain radiating down the leg, back of thigh, buttocks and groin. Sound like anyone you know?
So I agreed to the procedure. As long as I’m not anesthetised. It will be happening on Thursday. IN three days. The day before my birthday.
I have no one to drive me to hospital, and no one to pick me up. I’ve had ablations before, there isn’t a recovery period. I’ll be find the next day. But it will be my birthday, so I hope nothing unexpected happens.
If the right side is successful, as in a big reduction in pain, then he will do the left side. The beneficial effects of a radiofrequency ablation can last anywhere from 6 months to 2 years. If they are successful, the next step is surgery to fuse my SI joint, stop it moving and hopefully reduce the pain.
I doubt I can do the surgery. PTSD. Enough said. But I have high hopes for the radiofrequency ablation. I have a plan, a sensible one. One that is likely to work. The idea of NOT having a knife stuck in my back, and twisting every few seconds is bliss. I could do so much more if this pain wasn’t so excruciating. My RA pain is mostly just an annoyance compared to this lumbar spine pain. When I have megaflares, the RA matches it, but its not as sharp. This is knifelike. And constant. It never stops. RA pain is deeper, more achey. My RA does not feel like a knife stabbing my joints…much more like a spoon being used to try and sever the joint. Dull, but constant and intense.
Different.
But hurt.
My spine hurts more. Much more. Hopefully in four days, that pain will be significantly reduced.
I am so glad he has agreed to do the ablation for you without anaesthesia. I’ve had ablations both with twilight anaesthesia and without and although the local stings a bit, it feels not that much different to getting a steroid injection, but obviously the ablation takes longer. All my fingers and toes are crossed that it brings you much needed relief. I feel the same as you about getting lifts to and from procedures. My mother lives 15 mins away but I much prefer an Uber! My son has just recently got his licence and oh my goodness the last 2 procedures were great when he could do the drop off and pick up!
Good Luck for Thursday x
All the very best wishes for Thursday and your birthday too
You’ll be in my thoughts. It will be fine. When I have my RFAs, I have both sides done at once. I know your pain doc needs to start with one side this first time (to see if it works for you), but you may want to ask about doing both sides simultaneously in the future. You will be very sore if you do both sides at once, but it’s nothing compared to what you deal with every day.
RFA has been a god-send for me. Also, doing it together saves on needing to find a driver twice. Just a thought.
I was just told by a neurologist that RFAs can cause long-term damage because the nerves gather the signals that tell your body to deliver the blood supply to that area. I don’t care. I need relief to be able to function now. It’s kind of like the corticosteroids…I’ll deal with the consequences if/when they come. I need to get through the here and now.
Also, can an ortho do a discectomy /laminectomy on your L5-S1 to remove the portion of the disc that impinges on the nerve? I had that done. It does require surgery. I understand (really, I do) about the PTSD. Maybe as you do RFAs, you will gain more trust in the doctor and his team. Just another thought. As always, you are in my thoughts.
Oh I hope it works out for you Neen. I am also having SI joint issues and we have discussed radiofrequncy ablation so iw ill be interested to hear how it goes.