Foot and leg still numb after Cauda Equina surgery

[LondonCallingBaby]

I’m not sue a follow up with hospital for another 4 weeks, and can’t get to see my GP for love nor money.

I recently had emergency wide decompression surgery for Cauda Equina, which has definitely worked on my bladder issues.

However, I am now back to having a constant pain in my calf, and either pins and needles or a completely dead foot and lower leg. Is this normal? I worry that as the pain and sensation in my leg/foot is the same as before surgery, could the Cauda Equina come back?

The altered feeling in leg usually appears a few moments after sitting - I am really worried that the compression on my spine is still there and I’m going to lose circulation in my lower leg.

Anyone any experience of life after Cauda Equina surgery please?

It takes time. Did they tell you about standing and lying being better than sitting? I was advised not more than 30 mins sitting max at first
The nerves can take up to a year to sort themselves out, I had random stuff like pins and needles in my arms etc. Have some numbness left now but no leg pain and my surgery was 2017
Honestly I overdid it a couple of months after my op and was limping around convinced I had knackered my back!

@pawpaws2022 that gives me some hope thank you! Yes I find lying helps the strange sensations, but the pain is actually worse. Due to other health issues I can’t stand for too long but I have noticed that it does feel better. But, obviously I can’t spend the rest of my life not sitting down (I use a power chair for distances over 100m)!

I think it was for the first 8 weeks they said not over 30 mins. TBF I spent the first 3 weeks sleeping (op was 5hrs and it wiped me out!)

The residual numbness I have is just my foot slightly and the outside of my leg, but mine was weird - I actually drove myself to a&e with cauda equina and didn't have any bladder/bowel issues. Once they redid the MRI they agreed with me it was CE and operated

Depends on your other issues but I booked a PT for 8 sessions for rehab and worked with a physio too on regaining core strength which helped a lot. But yeah, it's weird sensations at first! The tingling in my arms was nuts, it felt like my arms were falling off

Long(ish) term recovery is normal in my experience.

Post emergency surgery for me instantly solved leg pain and leg numbness. But for me it took 8 ish months for bowel function to return and 12 ish months for bladder function to return. 10y on I'm left with a permanently numb saddle area but everything else is normal. It depends which strand of CE nerve took the most damage.

I would set your expectations that full recovery could be 6-12 months.

Thanks all I have my first physio on Monday so I was trying to hang on until then to ask questions, but as I say, I just panicked

I can cope with a long recovery time, and not sitting for more than 30 mins (they never told me that though) -!just so long as I know I’m not getting worse.

Hospital care was wonderful so I will form a list of questions for my follow up phone call in April

Trying to think what else I was told
No bending, lifting or twisting and that the worst thing for backs is stuff that involves pulling and bending - using gym exercises as an example, squats with a barbell ok, bent over rows were a no as you're bending and lifting

They did say walking was the best thing to stop scar tissue sticking so I walked on every different surface I could find and built up to 10km but I did go a bit excessive as I was determined to be back on my horse after 8 weeks

Sorry, I can’t help with after surgery care but was wondering if you’d tell me something. What took you to A&E?
Asking because I was diagnosed with spine arthritis last year. Last week I began to have bad pains down one leg. Was able to get a GP appointment, miracle in itself as our surgery has been locked up like Fort Knox for the last two years. Saw a doctor I hadn’t met before. Explained about the severe pain & recent bladder problem, unable to retain when needing to go. He prescribed paracetamol & a nerve med, Gabapeptin, & said report back in three weeks. But two days ago the pain suddenly got much, much worse. Excruciating from my buttock down to the foot in that leg, so bad as soon as I even stand up. Getting up & down stairs is impossible. Have to go up to the toilet but feel like throwing myself down just to avoid having to put any weight on that leg.
Being weekend can’t phone the doctor Our local hospital only has a small A&E with no X-ray or scans at weekend. I just don’t know what to do for the best, try the GP tomorrow I suppose though not much hope of an answer on a Monday.

@Darklane I have had back problems for around 4 years now. My rheumatologist I first saw towards the end of last year was the first to organise an MRI, so when the results came in he rang me to say it showed a few irregularities and that if I had any issues with bowel or bladder to get help immediately. It was later that week that I realised I couldnt feel myself weeing so rang 111. They organised an immediate transfer who took me straight to A&E at my local hospital, who then organised another MRI and transferred me to the specialist spinal hospital. I think had it not been for my rheumatologist ringing me with the warning, I dont think I would have paid much attention tbh. I didnt have urine retention, more a numb feeling and no control over flow.

Fast treatment is vital with Cauda Equina - I understand what you're saying about local hospital with no scans on the weekend, but I would say if they suspect CE they will transfer you to where you need to be. I wish you the best of luck

Thank you so much for replying. I obviously need to get some help then. I’d only been warned about urine retention which I definitely don’t have, just the opposite in fact

Hi OP I had CES op last year it took a long time to recover a lot of the pain was gone but the uncomfortable numb sensations and tingling in my leg took a long time to go off and I was not able to walk far for ages. My leg is still a bit weaker and I can't go on tiptoes. I still get some pain in my back and numbness in the leg but the numbness and uncomfortable sensation is a lot better and I can walk a lot better.

Thanks @MikeandDave, that's reassuring re the tingling. I had convinced myself that the circulation was being cut off and I was going to end up losing my leg - not that I am prone to being a drama queen or anything Hopefully you'll continue on your journey to no pain

Thanks it is very worrying every time you get any kind of sensation similar to the initial CES symptoms and of course it can reoccur so it's not unreasonable to worry but you have to remember it takes a long time for the nerves to heal. I found a guy on YouTube who has done a whole series on his recovery that you might find helpful he covered some things about his mental health which I thought was good m.youtube.com/watch?v=adqZF__LJog&list=PL0EdxCKmpW_GaziWTQm-VdcYeTlzIEdLi&index=1