Could this be cauda equina

[ChristmasPuddingAllRound]

Hi, I'm looking for some advice and help please.

I have been experiencing back pain since last July which has been getting steadily worse. I am normally very active and fit; everything from running to powerlifting.

From November I cut back on running due to the pain in my lower back and began to focus on core strength and mobility. I tried yoga and had deep tissue massages etc I kept mobile by walking and bike riding.

Nothing worked and the pain began to go down my right leg. In the middle of January I rang the Dr who diagnosed sciatica over the phone and gave me naproxen. This did nothing and after a week I went back. This time the Dr actually saw me, she looked at my posture asked me to raise my leg (I couldn't) and said it was nerve pain and to get some physio.

I couldn't get an NHS physio so got a private appointment but they had a 2 week wait list. By the time I saw then I was in so much pain I couldn't find a comfortable position; the pain went down into my toes. Physio took one look at me and rang the Dr to get a referral for MRI and a prescription for gabapentin. We then arranged a follow up for 2 weeks.

Things still didn't get better and I was told there was a 7 week wait for the scan.
However, at the weekend I nearly passed out due to the pain and ended up in A&E. The nurse examined me and suspected Cauda Equina, the ortho surgeon who then examined me said it was just bad sciatica but they would admit me for scans and to give high strength painkillers.

The MRI shows a severely herniated disc (this is all they told me) which they wanted to manage with painkillers, however, after nearly passing out on the physio they then said they would do a nerve root injection. This has been delayed due to emergency surgery on other patients.

Overnight though I have developed urine retention to the point where they have had to use a catheter. Could this be a worsening of the disc? Is there anything I should be pushing for?

I am so anxious, is there anyone who could help please?

[ChristmasPuddingAllRound]

@MsOllie I did a garden centre last week when my husband was home to drive, for exactly the same reasons!
Can't wait to be free from all the medication but appreciate that it's still early days!

[MsOllie]

It does definitely take time
Driving to somewhere different to walk helped me as it's a change of scenery
My first choice was a shopping centre because flat, smooth, places to rest, and also coffee
Then I "graduated" to a local park which had a flat path by the river. Pokémon go was big at the time which helped a lot

[ChristmasPuddingAllRound]

For anyone still following or who is searching for similar stories...

I did as @anotherdaynotanotherdollar suggested and rang the consultant/secretary explaining my concern over the pain. They were great and very reassuring and he called me within 20minutes. He explained that the nerve had been severely compressed and that it was going to take time (maybe a year) to recover. He advised me to ease back on the walking as I was either walking or laying really.

So I did that and now, about 3 weeks post surgery, I am off morphine and decreasing naproxen. I am much more mobile and able to walk more and do more. I do still have some pain and aches but I am reassured this is normal.

I had a physio appointment where I was told the first 4 weeks would be boring and about small movements, then focus on core building and then muscle development. It is very restrictive but positive. I can drive short distances now which also helps mentally!

At home the things I have found most useful have been a grabber stick and shoe horn contraption and a wedge shape cushion for reclining instead of laying flat or sitting. A water bottle and things being placed ready for use like tea bags and cups etc. Also, easy to cook meals for when I don't have another adult available to help cook....the children have stepped up but they are still learning!

So, things are better but still with a way to go. Thanks for all the help and listening so far ☺️

[anotherdaynotanotherdollar]

I'm sorry to hear you're questioning yourself. I think if you look at the fact that that disc was unlikely to come off your nerve, and the fact you already have some damage (and it would have got worse) you didn't really have a choice.

I'm not best placed to advice you on recovery given that mine wasn't standard, however I would maybe contact your consultants Secetary and explain about the leg pain, he may want you back through the scanner.

Attempt to get on codeine asap, ensure your are taking strong stuff to keep your bowel moving and keep mobile every 20 mins or so. Hopefully you will suddenly turn the corner. I was in a horrid way when I had my stimulator fitted - having the battery in was awful. Spent a week on my front as couldn't do anything else.. it eased a bit and then I suddenly had turned the corner.

Sending you a gentle hug. It's shit. X

[ChristmasPuddingAllRound]

So 6days after surgery and if I'm honest it is just utterly rubbish
I am so fed up of limited sitting and standing and the pacing in-between. I m spending more time laying in bed as the sofa isn't supportive enough. But, if I move slightly out of alignment I get that horrific shooting electric pain in my leg.
I have increased the gabapentin and naproxen and am only just reducing morphine during the day.
There is a part of me that is currently regretting this and I have no one else I can say that to. I really hope this is alright. I see the consultant at the end of the week for a review
What have I done

[ChristmasPuddingAllRound]

I had a much better sleep last night thankfully. Still wake but more in discomfort than pain.
I had to get into bed yesterday afternoon as I think I was trying to walk too much too quickly and I got some shooting pains in my leg

I was warned this could happen so fingers crossed it's all ok. I still get a shooting nerve pain if I'm not fully aligned when I try to roll over but I am trying v hard to stay positive!

I've started to drop one gabapentin tablet but kept up everything else to help with relief from the surgical pain.

[ChristmasPuddingAllRound]

Morning everyone and thank you for the replies. They are so helpful.
For @Sunshinegirl82 and @Legday I'll use this as a record of recovery to maybe help in someway!

So, I'm back home now. The hospital discharged me 24hrs after surgery. I had to do physio first and show I could walk unaided and do stairs as well as sit and get in and out of bed doing the log roll. The back pain was manageable with painkillers buy it is such a different pain to that nerve pain...I had a fantastic moment when I got out of bed the first time and I realised there was nothing in my leg. Not one bit of pain...hurrah and long may it last! I also have my pelvic floor function back as this vanished in the week before surgery due to nerve impingement. I did have some tingling in my leg and a little bit of bum cheek pain when moving but this is normal they say and seems to have faded.

I had to wear some automatic leg compression cuffs until to the nurses were happy I could mobilise on my own...they did make it tricky to sleep and get comfy in the hospital bed. I now have the compression stockings which I need for two weeks.

I posted my scan up-thread. The consultant told me yesterday that the herniation hadn't got any smaller and that there was some debris in the area from the disc. The nerve was/is severely inflamed and sore and this will take a year to calm down, but as mentioned I can feel the difference and am now just very cautious!

I am restricted to stationarity standing of 2 minutes and I can't sit for more than 20 minutes which resulted in a few stops on the way home to walk for a bit. The walking and moving really does help loosen the back. I hadn't anticipated this though and ended up walking up and down a layby at peak rush hour in a nightdress, cardigan, compression stockings and slip on shoes. Lovely.

The same restrictions apply at home and there is no twisting, bending or basically getting the spine out of alignment for some weeks. For 7daya it's is nothing but walking or resting. I have found having pull on dresses easiest as no bending down required. I have toilet seat raisers and the physio recommended a firm high back chair for the first few weeks to avoid slouching.
I have also got a long handle shoe horn and a grabber stick for things I may drop if no-one is around. However, I would really recommend that you aren't on your own. I don't feel up to much at the moment.

I am to wean off all medications slowly. I am currently on naproxen, gabapentin, morphine (slow release capsules) and paracetamol. The Physio has said that I should be able to get back to all my previous sports, including running. The only one she was wary of was powerlifting which I understand.

I think that's it for the moment and I hope it's helpful, I am just focusing on the fact that there is no nerve pain in the leg. Bloody amazing!

[Legday]

Came across this thread by chance but so glad I did. Thank you OP and all. It’s always so hard to describe the pain to anyone and your messages are going to help me articulate better when I’m speaking to someone. I think I am heading towards surgery at some point. I may PM some of you for names of surgeons.

[Oscarthedog]

It took me several months to be able to walk for 30 mins and still get nerve pain caused by the scar tissue 12 years later. But the improvement is massive. The inflammation around the nerve roots took nearly 6 months to start to settle and it took nearly 2 years of rehab to get back to semi normal. You will get there but don't expect miracles bit hopefully a decent improvement. Mine was a bilateral discectomy.

[Sunshinegirl82]

@ChristmasPuddingAllRound

I really hope this is the beginning of the end for the pain for you and you can start to get back to normal a bit once you've recovered from the surgery.

If you can it would be great to hear how your recovery goes as I think I'll be headed the same way in the not too distant future.

Take care.

[Chaotica]

I had surgery (years ago now). The first week my back was really painful - take it easy. You need to get walking but really don't over do it. I was kept in hospital for that week and then rested at home. It took physio and about 3 months to get a decent range of movement back (I'd had the disc problems for a long time so I wasn't used to moving). Good luck.

[ChristmasPuddingAllRound]

Thank you @evilharpy , that's exactly how I feel in bed.....it makes me not want to move even though I know I'll be better for it! I can have two weeks of doing nothing but concentrating on me as have someone staying with me full time! That should help

[ChristmasPuddingAllRound]

Thank you @FavouriteDogMug , I think the nerve pain is so horrific that part of me dreads doing something to bring it back.
Just struggling to get comfy a bit but have just been given some more morphine to take the edge off. Looking forward to coming off these meds!

[evilharpy]

@ChristmasPuddingAllRound yes - I was exhausted. I remember being so overwhelmed with tiredness going on a very short walk (and I mean very short, round the block) after a couple of weeks that I just cried at the thought of having to walk the last bit. I was so slow and only able to shuffle I was overtaken by lots of elderly people who could shuffle faster than I could. I don't remember being stiff but I was very sore, although the soreness went a lot quicker than the exhaustion.

I struggled a lot with turning over in bed and had to kind of haul myself round by hanging onto the bed frame. I was also very sore first thing in the morning but it eased off quickly once I started to walk around.

[FavouriteDogMug]

I have had this surgery it really does take a long time to heal. Be very gentle on yourself for the first few weeks and build up walking very gradually. Take plenty of rest and avoid sitting bending twisting lifting ect.

[ChristmasPuddingAllRound]

Hi @evilharpy and anyone else who's been through this, can you remember the first few days after surgery at all? My back feels like I've been kicked by a horse. The stiffness after laying is breath taking! I know it's only been 24 hours and I guess I'm just looking for that positivity!

Absolutely paranoid about overdoing it or doing something to damage the surgery!

[Roystonv]

Just read, so glad you have been able to have surgery and all the very best for a successful recovery. Do be very careful coming off the meds.

[ChristmasPuddingAllRound]

Thank you all so much! I love hearing these positive stories; it really helps!....yes a disectomy and laminectomy. Feel a bit wiped out at the moment. I have spoken to the surgeon this morning and he is pleased.
I've been warned it's a long road but, oh my goodness, I can't wait to get out and about a bit!

[PermanentlyTired03]

I had CAuda Equina surgery a few years ago- keep shuffling around to minimise scar tissue developing around the surgical site. I have nerve damage down my leg because of this. Hope
You feel better soon

[catfunk]

Op my partner had a private discectomy earlier in the year as he was in such a desperate state.
Recovery was very strict but it was an incredible transformation! Good luck x

[evilharpy]

Hi @ChristmasPuddingAllRound hope you're feeling ok. I had surgery (assuming it's a discectomy you've had?) in January and had a really good recovery. The pain I was in was horrendous and the consultant didn't want to bother with injections as he didn't think the herniation would resolve itself, so we went straight to surgery although I did have a few delays for various reasons. I'm glad I did it, I'm not back where I was pre-herniation but I'm well on the way and feel like I've got my life back.

Hope you have a very straightforward recovery. Get one of those litter pickers if you haven't already, you'll find it very useful, and keep walking walking walking as much as you're able to and don't sit for too long.

[ChristmasPuddingAllRound]

@Sunshinegirl82 and anyone else following...

I opted for surgery privately and am now 12 hours post surgery. My back aches to buggery but, on the two sort walks I have managed I felt ok.

[ChristmasPuddingAllRound]

@Sunshinegirl82 , well, during the day yesterday I was thinking I would just try another set of injections. I had weaned off the naproxen and decreased the gabapentin. However, I am still on daily morphine.

However, as you can see from the time, I am currently in quite bad leg pain again and have just taken some top up morphine.

It's private surgery I'm considering... the NHS can't give me an estimated date as the waiting list is so long. I just can't carry on like this though.

[Sunshinegirl82]

@ChristmasPuddingAllRound

I'm off all the pain meds for now (I wanted to see if I could be functional without them) and I am still in some pain but I can get through the day which is a vast improvement. I think I will need to re-start the amitriptyline as the nerve pain in my leg is returning and I am still limited by the pain in what I'm able to do.

My opinion (for what it's worth, and I know I'm just a random on the internet!) is that if you need morphine to get through the day I'd probably go for the surgery to be honest. It's not risk free but from a cost/benefit analysis perspective it seems likely it's the best option.

Is having the surgery privately an option?

[ChristmasPuddingAllRound]

Thank you @Sunshinegirl82 it really is about quality of life isn't it. Are you are on pain medication still? I'm trying to judge how much pain is being masked by the gabapentin and morphine.
I don't have long to decide really...