Progress Report! There is Progress!!

It’s been a very long time since I last reported progress, so I felt it was time to do so again!

Since I last posted I’ve had, and been discharged from, physiotherapy, I’ve been up to Edinburgh and seen my surgeon and I’ve started back to work. I’m now at 14 weeks post-op and the change in me is quite astonishing really.

I can now walk for a very long way without any problems, unless you count losing my sock and shoe in a muddy puddle. My hip/groin/leg pain has 99% gone. I still get a slight nagging right at the top of my left thigh, but nothing in comparison to the searing pain I used to get pre-surgery. I have a long and well-healing scar from my bra strap to my knickers – a reminder of where I’ve been, like a sticker you put on your car when you’ve been to Blackpool! I still have some ache at the site of surgery and I’m still a bit stiff, so doing ordinary things like getting dressed is still a contortionist’s dream. If I get down on the floor, I can’t get up unless I’m hanging onto a piece of furniture. Sadly I didn’t discover that until I was already down and then had to crawl to the nearest chair! You live and learn.

The surgeon was really pleased with my progress. He was happy for me to start doing more than walking and suggested pilates, swimming and cycling. But not running. Not yet. Until my bones have fused with the help of the rods and screws, and aren’t likely to be jarred by anything high impact, I can’t even think about running. I try not to, anyway.

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These are the bits of tin holding me together!

I started phasing myself back into work at week 6 post-surgery with an hour a day for a week, then two hours daily for the next week, then four and then, finally, six hours. It meant I could gradually get used to driving and being at work again. A few weeks later I still get really tired by the end of the day, especially ones which have seen me either spend too much time in front of the computer or too much time standing with customers.

Thanks to the advice of a friend, I was put in touch with Access to Work,  which is run by the UK’s DWP and is aimed at keeping self-employed people in work when they are struggling with a disability. Although I’m post surgery, my recovery will take a year and having some guidance about how I should be sitting, lifting, standing etc. is really important. Last week I was visited by an assessor and I’m waiting on the results of his report. I only wish I’d known about Access to Work before my op.

The biggest change has been in how I am feeling. I no longer hurt, so I look better. There is no pain etched on my face, where it used to be. We went for a weekend away recently and I could again go out for walks and appreciate the countryside from the pathways, instead of the car or the mobility scooter. I can even walk to the pub! And, because I’m mobile, I’m starting to lose weight.

It’s these small things, ordinary things, that are now so precious to me. Being able to walk hand in hand with my husband, being able to walk the dog, being about to do the shopping – these things were either an effort or impossible before.

My grey world has at last become far more colourful.

Meeting Mr Khan

Yesterday I went to the Department of Neurosurgery at Edinburgh’s Western General Hospital to meet with a surgeon. Understandably I was very nervous; this guy was entirely capable of inflicting pain and putting me off my feet for weeks. The person we met with, though, was the most attentive and reassuring doctor I’ve ever known. He spent over half an hour with us, explaining my MRI and the options it threw up.

My third vertebral disc has just about disappeared; instead of being a lovely spongy bit of spinal padding, it’s now a sad little slither of nothingness. The vertebrae either side of it have been banging against each other and, as a result, are starting to fuse together by their own accord. The pain I’m getting in my leg are the result of nerve damage being caused by all this going on – the spinal channel is currently narrowed and the nerves are getting jangled and prodded when I try to walk or stand.

What Mr Khan suggested was looking at non-invasive methods first. This is because the surgery I would need to have (and might still need) is massive. It involves taking pieces of bone from my hip to pack the fusion of bone and then fix the two vertebrae with plates and screws. It would take months to recover from it. It’s not a bad a recovery as it used to be, but it’s still a huge operation made worse, in my case, by some spinal curvature (scoliosis) probably caused by the fact that I have one leg longer than the other.

So what I’m going to try is a treatment of nerve numbing drugs, allowing me to get on with life whilst my spine hopefully continues to fuse itself, accompanied by an injection of anaesthestic, guided by an MRI,  into my spine. I’ve been given a timeline of four months, after which time I go back and see Mr Khan. I’m to keep a diary of what’s going on, how I’m feeling, how I’m coping and if I can do more or less with the drugs. The side effects of the drugs are pretty nasty and I’m going to feel spaced out for a while until my body gets used to them. I may not be able to drive or work during that time. I’m prepared for that.

I did challenge this; I’ve been in so much pain for so long – I just want to be well again, even if that means surgery. I didn’t want to waste any more of my life faffing about with things that might not work. I had already got the idea of surgery into my head and had accepted the need for it. However I totally understand, once Mr Khan had explained, the benefits of doing things this way.

If the drugs work, I could be walking short distances on the treadmill within weeks. I could start swimming and cycling. I could try some gentle pilates. Within a few weeks!

 

I couldn’t leave without asking the all important questions:

Did running cause this? Perhaps, but Mr Khan said he would rather see a fit 50 year old runner with this problem than an unfit 30 year old couch potato!

Could I run again? Yes. I would have to start with short distances on an even surface and might be restricted to shorter runs (up to 10k) until we know how stable my spine is. Basically I have to behave myself.

 

So there it is. Today I will try and get the prescription satisfied so that I can start the drug regime this week. Then it’s a wait and see.

 

The Verdict

A few weeks back I went for an MRI. It was a surreal experience. You are basically sent, lying down, into a brightly lit cylinder. Before going in you are given ear protection and a panic button. The panic button is there because the cylinder you are slid into isn’t that much bigger than you are and it could feel claustrophobic. As I decided to close my eyes and keep them closed throughout the procedure, I had no idea how close the ‘ceiling’ was until the end. That was a smart move! My scan took about half an hour, in batches of four – five minute scans. Each one was very noisy, with a series of clicks, whirs and bangs and in between each the radiographer reassuringly told me what would happen next.

The results were sent to my orthopaedic consultant and I finally met with him today. The verdict is that I have Spondylosis of the lumbar spine, basically arthritis in my lower back. The third and fourth vertebrae have worn out and the disc between them is bulging out on the left side, pushing against nerves and causing pain in my leg. I got to see my body cut crossways and lengthways – really amazing to see!

The upshot is that I need surgery on my spine. My consultant is referring me for surgery today, in fact he was doing it when I left, and I will have to travel to Edinburgh Western General for treatment. I have no idea how soon that will be and I’m prepared for a long wait, such is the NHS. The good news is that the surgery isn’t as major as it used to be and I should only be off my feet for a few days. Also the MRI showed that the rest of my spine is in perfect condition, even more reason to have the surgery and get on with the rest of my life!

So, that’s where I’m at. After a whole year of constant pain I’m looking at a few more months and then surgery. After that I don’t know if my bursitis will clear up on its own or if I’ll need a second surgery for that. I’ll speak to the surgeon when I go to Edinburgh. I suspect they’ll do the spinal surgery and then see how that effects everything else.

The consultant could not tell me what caused this. Spondylosis is a wear and tear disease. I’ve had back problems since I was 16, so this is probably just something that was bound to happen. It could be that the running aggravated it, it could be that the running held it at bay as I lost weight and gained stability in my core – who’s to know?

I actually feel better knowing what is causing the problem. I feel better knowing that there is light at the end of the tunnel, albeit surgery. I also feel better that, at last, I have proof that I’m not faking it, there is really something seriously wrong. I can actually use my mobility scooter and not feel a total fraud!