Severe spinal stenosis, how to get seen fast

[Shambolical1]

June 24 I had surgery for severe spinal stenosis; getting to the point of surgery was a bit of a nightmare (gaslit about my level of pain, not being sent for imaging, more gaslighting at a disastrous A&E visit, a radiology consultant who wanted to MRI the wrong bit - I could go on), and I did have some unrelated setbacks afterwards but the surgery itself was a breeze.

I've been slowly rehabbing and am almost back to my normal level of activity.

Two days ago and totally out of the blue, the pain, weakness and loss of mobility in my back, hips and legs has returned. In the course of a day I went from getting about normally to needing a stick to walk, even indoors at home. I know what these symptoms mean: the next step is crutches.

Naturally I'm worried that the Aspen device fitted to my spine has failed or is failing or that something has happened to vertebrae above or below it. My stenosis was very severe before and the surgeon said most people he sees with that level of spinal cord compression are in a wheelchair by the time they get to him. I wasn't, (though I needed crutches to walk and couldn't lay down for eighteen months) and have no wish to end up in a wheelchair now.

So I contacted my GP to ask for an urgent imaging referral and a referral back to the surgeon.

My GP surgery have requested I attend a physiotherapist appointment on 30th April (ten days from now) "and they can refer you from there". This doesn't sound right to me, it sounds like the slowest route ever, and it seems they're sending me off down the gaslit trail again.

Can anyone please advise a faster way to get at least the imaging I need to reassure me my spine isn't collapsing? I would rather continuity of care as to the surgeon etc..

That sounds a nightmare. Can you get in contact with the consultant who did your operation or at least his secretary or an admin in the department? Perhaps ask if they can determine if something has gone wrong in what they did, rather than go through the circuitous route of physio, etc? If no joy there, can you contact PALs for advice?

Could you go to A&E or urgent care with the pain, OP? That way they might xray you after you've been triaged. Don't necessarily mention you've been in touch with the GP, although technically if you're in acute pain it shouldn't make any difference. You need care now, not in ten days or whenever, and you have a right to emergency attention, under the circumstances.

Contact your surgeon's secretary and explain what has happened. I would hope they should get you in to be seen.

Terrible. May I ask what the operation was? I also have stenosis...

So the pathway the gp has sent you down is the usual MSK pathway for elective MSK - physio then referral to surgeon if req.
however this isn’t elective. The physio will get your referral and also identify this and just refer you straight on to spinal team. They should triage your referral and then allocate you as clinically appropriate: urgent, soon, routine etc. then the waiting time is anyone’s guess (unless you’re in the North then I can hazard a guess).

that being said, I’d be getting in touch with surgeon secretary as per pp above. If you’ve had a device fitted and it’s failing you should have urgent access in. Is there no hot line/support? Have you actually been discharged back to GP? Or are you on a follow up schedule? Or PIFU (patient initiated follow up) either way, ring up and request to be seen.

if failing that you get no where, call PALS.

I would present to a&e. I think it's a red flag symptom from going from being able to walk, to not without support in a day- and needs investigating. Any pins and needles, numbness, difficulty weeing it any other symptoms
However I am not sure the GP will be able to get you seen as quick as a&e

I have a leg deformity that has caused spinal stenosis and in my area the route to see a consultant is via a GP who then refers you to physio and they then decide whether to refer you to a hospital of their choosing.

The wait time to see the GP is 4 to 5 weeks - if you are assessed as having a chronic condition.

That is why my consultant at a distant but specialist hospital has said he won't discharge me so I do not have to fight to get back to him. If you are able to get an appointment with the consultant it may be worth asking if you can be kept on his or her list.

The bits that were pressing on the nerves were removed and a metal device put in to stabilise the spine.
As soon as I woke up, the awful leg pain had gone. There was still some back pain as I recovered but nowhere near pre-surgery level.

A&E were hopeless last time. My GP had sent me for an x-ray (eventually, but that's another story) which revealed I had the problem but an MRI was then needed pre-surgery. While waiting for that I was repeatedly told that I MUST go to A&E if any one of a few things happened.

One if these things duly did. It was, unfortunately, a Saturday with no MRI available. Blood work was done and I was then left in the waiting room for seven hours without any meds offered. Eventually a doctor appeared and cheerfully told me the blood work was normal and I couldn't actually have what I had, because I wouldn't be walking and the pain would be unbearable or close to it, so I should go home and wait for the MRI already requested.

The discharge letter showed they'd booked me in with 'generalised weakness'. What? No wonder they left me to stew, they must've thought I was wasting their time.

I emailed PALS about it afterwards and didn't get anything more than an automated acknowledgement with a disclaimer saying there would be a wait for a response and not to email them again or they'd put you to the back of the queue.

Ideally I'd rather not go down that route!

I have emailed them now, thank you. Waiting hopefully for a reply!

Thanks. I'm so sorry that your pain has returned. Hope you get seen soon.
I am very reluctant to have surgery but it may be the lesser of two evils if things get worse.

So even PALS is groaning under the weight of patients complaining. Worse and worse.