Cauda Equina (if not, then what)?

[medianewbie]

Long standing back issues with L5/S1. Recent issue with bowels (gone from daily to every 3 days, not aware until voiding) Less sensation 'down there'. Physio told me to see GP. Did so at 9.30am. GP very thorough. Did work up including PI & 'sensation test', said 'concerning' & sent me straight to A&E.

Different story there. Sat in chairs for hours. Ortho guy did very vague sensation test (mostly around lower thighs). Insisted on 2nd PI. Couldn't feel initially (he said: 'you must be able to' then inserted much higher (which hurt & I said so & he sounded triumphant). Sent for MRI. Waited another 3 hours. By 6pm he was going home (small local hospital, no specialist provision outside 9-6). I asked again (there on my own, painkiillers worn off & no food / drink for 6 hours). 'Oh, yeah, it's fine you can go'. I wasn't shown my scan until I insisted. Shows further slippage of discs on L5/S1 areas but 'not enough for CE so go home and take painkillers'. Obviously this is very good news.

When I asked what it WAS then, told to go back to GP. Which I will.

Do I now ask about a referral to Neuro? (local physio is 100% useless)

anyone with similar experience please?

Yes I think it is neuro needed.

I had suspected late diagnosis CE couple of years ago but MRI showed cervical myelopathy in the c's but I'm sure I've come across other condition sufferers saying they were L's. When I was an inpatient I'm sure neuro had the last word before I went into theatre.

I was so lucky they were about to let me go from A&E with a prescription of naproxen and a how do you think you are going to get an mri this weekend attitude, until a second higher doctor walked in, whom I owe such a speedy recovery too.

You've got to persist. There is a number of spine conditions.

@Mindovermatter45 thank you. I will go back and ask the GP re this.
Ortho mumbled about physio/'women's problems' (!). I have a current complaint about them re an overdue surgery on my foot which I feel doesnt help matters.

Yes ask for referral

I had long standing sciatica but it felt different on the last flare, physio on visit 3 said she wasn’t happy treating me and sent me for MRI
that got me a neuro referral and I agreed to surgery (I was seen quickly as I took a last min cancellation)
48hrs before my planned surgery I developed cauda equina, operation was 5hrs and I was discharged less than 21hrs post op

Hi OP, i’m sorry, that sounds like a shit patient experience and you must be sore and scared.

It would seem that the scan has confirmed what your symptoms are saying in that it’s getting worse but also that it hasn’t (yet) reached the threshold for a definition of CES. Obviously you don’t want it to reach that point! I would go back to your GP, tell them that the MRI showed further slippage at L5/S1 and ask for urgent specialist referral.

@itsleviosa
@MolluscMonday

Thank you for those suggestions. I had been feeling dispirited. I had quite a bit of leg surgery with this Dept a few years ago with an outstanding surgeon. It needed re-visiting with a different surgeon in 2019 & I was bumped from the list 2 days prior, then 'lost', then when he finally saw me (in 2024!) he said it was 'better & doesn't need surgery'. I have a large bony avulsion (bit of bone pulled away from the main bone by a ligament tear?) in my ankle and I'm in pain. A locum saw me and said it needed surgery and 'it's awkward as Mr X is Head of Dept, but I'm happy to champion you if you'd like to go ahead for your surgery'. Sadly I was never sent the letter, written last August & became aware last month (nice Dr now left). I put in a formal complaint. I'm aware I am seen as a 'difficult patient' but the Ortho examination was cursory & I was not treated with much respect (I asked for a chaperone for the PI exam, which had just been done thoroughly by GP anyway, & told 'no one available' if you don't want to have it we can't proceed as your bladder scans empty so no proof of issues at all.
I'd taken in a detailed 'examination findings' letter from GP who phoned ahead 'query CE'.(it's my bowel that's changed & lack of sensation on saddle area, but only knees and lower back checked in hospital). This was an 'Ortho surgeon'?
I will go back to the nice GP before he gets moved on too!

If it’s any help I would expect you to be referred to neuro rather than ortho….

Really sorry you’ve had such a shit time of it.

@MolluscMonday (that's helpful) Thank you x

Possible FND?

@bored1234 I think the imaging so far would rule out FND- it sounds to me like there is known to be disc slippage compressing her spinal nerves/ cord, just not to the point of reaching threshold for corda equina.