Where Have I Been? I’m Glad You Asked!

I’ve been everywhere, man, as the song goes. In hospital, in MRI machines: all sorts of fun things.

I wrote last year about my right knee sending to me to the emergency department just before I started my clinical drug trial. It is important to emphasise here, I have two different forms of arthritis: psoriatic arthritis (for which I am on the drug trial) and osteoarthritis.

In 2014 my left knee got very grumpy. Total knee replacement was mentioned way back then, but we tried a Synvisc-One shot as a less invasive treatment. With that and the proper exercises, I got another five years out of that knee. However, it seems time is up. In October last year, after my right knee had recovered, the left knee went out in sympathy. Badly.

At Week 16 of the drug trial I was allowed an intervention: a steroid shot in the very cranky knee. I also had an MRI. This was November last year. Sitting in my GP’s office later, the conversation went like this.

GP (reading MRI report): “Hmmmm, Grade 4 osteo.”

Me: “How many grades are there?”

GP: “Four”

Me: “Oh”

Not exactly the best news, but we hypothesised that the flare in my right knee had increased the load on the left knee, so now it was reminding me to look after it – in no uncertain terms. The steroid shot, some exercise, I’d be fine. That was my thinking. All was progressing positively for about ten weeks after the steroid injection. I was thinking I could start activating Limberation again.

Then came Australia Day weekend (end of January for overseas readers). Friday I woke up, the knee was a little swollen and stiff. I went and did some hydrotherapy. Saturday it wasn’t any better so I went for a walk around the block to see if that would help. No. On Sunday, I had lunch, looked at the dishes and thought “I’ll just go the bathroom first.” As I stood up from the toilet, something at the back of my knee snapped or popped or did something. So painful I fell back onto the toilet. Sat there for a minute, thought, “OK, I can’t sit here forever, got to get up somehow.” So I very gingerly managed to get off the toilet. The excruciating pain of the pop had gone, but this was one very unhappy knee. And it got unhappier as time progressed. I took some panadol osteo – I may as well have taken jelly beans. By an hour later I decided hospital was the place to go.

The poor taxi driver was quite distressed, I think, because by the time we got to the hospital, I was in….. a lot of pain. The hospital staff got me out of the taxi, into a wheelchair and into triage. To cut a very long story short, I was admitted. Finally got the pain under control at 1 am Monday morning. I don’t think the nurses believed me, but I was adamant the pain was worse than when I woke from my hysterectomy. It wasn’t just the knee, but now my foot was excruciating and my glutes were spasming. Because it was a public holiday weekend I didn’t get my MRI (yes, another one, I am now dating the MRI machine) until the Wednesday morning.

You know that look doctors get when one of their patients has something interesting, unique? I recognised that look! My rheumatologist came into the ward, holding the results, with excited stars in his eyes. “I’ve never actually seen one of these myself”, he said. I don’t mind when they get all super excited because it means you are medically interesting!

The MRI showed, amongst other things, a cyst dissecting my popliteus muscle. Not a Bakers Cyst, I must emphasise. This is different. The idea at that point was we could perhaps remove the cyst with keyhole surgery. This was good news, as I didn’t (and don’t) want to get kicked off the drug trial for the other arthritis! Minimal is best, I was thinking. Here is an extract of the report if you are medically minded.

So off to see a surgeon. Surgeon was not happy that my quads weren’t working, I couldn’t flex my toes and my left foot was just one big blob of pins and needles. He also quickly killed the keyhole surgery idea. I needed a total knee replacement. This was a shock, not really something I was planning on. Surgeon sends me off for another MRI, this time of my lumbar spine to ensure my muscle weakness wasn’t coming from my spine. I was wheeled down to the MRI department to make an appointment and they very kindly fitted me in on the spot. Wonderful.

Next day the surgeon rang me. They found a cyst on my spine too, so now I needed to have electrophysiology testing. Off to see a neurosurgeon. Now, dear reader, over the years I’ve had a lot of medical poking, prodding, needles, tests, monitors – but electrophysiology testing would have to be my least favourite. Interesting to be sure, but not so pleasant. You know that old saying, there’s a fine line between pleasure and pain? No, just no. Honestly, it isn’t terribly painful, but it certainly is not pleasant. The second part, where they stick needles in the muscles is not nearly as bad as the first part (but then again, needles never worry me). However, all good, the cyst in my back is not a concern, too small and not in the usually problematic location, not causing any issues. Mind you, he hadn’t seen a cyst in that spot before. Why was I not surprised?

I was still a bit stunned about the whole total knee replacement thing though. So I sought a second opinion. Same advice, total knee replacement required. This surgeon did explain the situation in a way I was better able to understand the problem. In his opinion, the inflammation from the osteoarthritis, with maybe some assistance from dear friend psoriatic arthritis, was causing the cyst. The cyst isn’t in a particularly good position to try removal safely and in his opinion unless we fixed the knee, even if they did remove the cyst, I’d just get more cysts. Great. Not.

Then I had to decide which surgeon to go with. In the meantime, what else was going on? We were, by that stage, in early March. Covid-19 was ramping up around the world. I decided to go with the second surgeon, Mr T, and surgery was duly booked for April 8. I needed a pre-operative health assessment by a physician, the knee components had to be ordered, then another pre-op with Mr T and a rehabilitation prep session with the hospital. All were booked, I was good to go. I had the pre-op health assessment and was sent off from that for a raft of tests (blood, ECG etc).

Then on Sunday, March 22 I got a call from Mr T (my pre-op with him was for the following day). Please don’t come in. Shortly thereafter, of course, all surgery was cancelled.

Consequently, I am now in limbo. A bung knee that has somewhat settled since the end of January hospitalisation, but only if I am careful. I’ve worked out I should do about 2,500 steps a day, in small time blocks, evenly spread throughout the day. Too much activity, knee swells. Too little, knee seizes. I can get around the house now without the walking stick, but for excursions to the supermarket I need the stick.

On top of that, I am self-isolating because I am on an immunosupressive medication.

When surgery will start up again is an unknown at this point: all depends on our containment/management of Covid-19. The surgeon will call as soon as they know. So I wait.

My next article will be about my clinical trial progress, which is going very well (although there is a twist to the story). It was a toss up whether to write about the knee or the clinical trial first!

Oh, and STAY HOME: Social Distancing is critical!

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Robyn Dunphy

I offer exercise guidance to those with chronic medical conditions where exercise is beneficial.

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