Recurring Cauda Equina

[UniMom101]

I've had CE three times now, with three accompanying surgeries all obviously performed on an emergency basis.

This has left me with very poor mobility and even poorer sensation in the saddle area, as they call it. I am in constant pain yet because of reduced sensation I'm not actually too sure where the worst of the pain is.

I've managed to hold off from catheters for the most part but I'm beginning to really struggle again. I do have a bit of sensation when needing to urinate but not much and it's definitely getting weaker. This is despite me going to the loo every 20 mins at times. I don't think I have a UTI as no temperature but I can't feel if there's any stinging when weeing, iyswim.

Anyway, to get to the point (just trying to set the context). Most of the red flag symptoms I have been told to watch out for in case of another CE episode I now am unable to recognise due to reduced sensation. This makes me worry as I'm not sure what would happen if I did have it again but didn't get the surgery.

Which leads to another worry. Each surgery has resulted in longer recoveries with more complications. The last time I was unable to move from lying flat for a few days, which was immensely painful and very difficult to recover from, despite frequent physio.

I guess what I'm kind of thinking is a/ how would I know if I had CE again, and b/ will future surgeries just increase complications?

Apologies for the self pity post, I'm just lying awake trying to sleep but am in too much pain

Sorry you're going through this. I'm just 6 years post spinal surgery and had suspected CE almost immediately after.
Thankfully it wasn't, I had some spinal compression but that was ridiculously painful, so I can only imagine what you're dealing with x

You can buy urinalysis test strips ( Amazon/boots). If you have nitrates in your urine it’s likely an infection.
Are you able to do pelvic floor exercises? That may help with frequency and avoiding catheters a while longer. I really don’t know how you would know you had CE again, I’ve only known one person who had it once, you have been terribly unlucky.
It all sounds awful. Can the GP refer you to the pain clinic? And maybe to some talking therapy? You have a lot to come to terms with, it must be so difficult. I’m sorry you are suffering so much

Is it worth booking a GP appointment and having a chat with them about it?
I would definitely be cautious with any changes from your normal and have a lower threshold for hospital. I had CE in 2017 and a 5hr operation and have reduced sensation

I have these dip tests at home which are the same as my GP uses

10 Parameter Urine Strips | Dipstick Tests | 100 Test Strips amzn.eu/d/hs0YMeV

Hello OP.

I have had CE 3 times too. I had it 3 times in 15 days and like you had the ops to sort it.

All I can say to you is if you are not sure and are red flagging to go back to ED. Dependant on where you had your surgery there maybe a triage ward for neuro/spinal so you don't have to sit in ED for hours.

Urine strips of Amazon are very good, gives you an idea of if you have a UTI or not, and try to monitor your intake and output until you get used to what's normal for you.

Have you got bowel and bladder support? If not ask for a referral to your nearest spinal injuries unit. Other option is joining cauda equina syndrome - spinal cord injury face book page as you will have access to a specialist B&B nurse.

You have all my sympathy, it's shit. I went to ED loads in my first year but eventually realised what was my new normal and what wasnt. i remember the paranoia clearly. x