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Chronic pain

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Could this be cauda equina

62 replies

ChristmasPuddingAllRound · 10/03/2022 07:20

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?

OP posts:
ChristmasPuddingAllRound · 30/04/2022 10:49

Morning @MrOllivander and @anotherdaynotanotherdollar thank you so much for the advice, I really appreciate it.
Apparently I can't be on both lists...I did ask, but was told it would be one or the other. I've now been on gabapentin etc since February and although it makes life easier I'm still in pain and living a very restricted lifestyle. All the consultant could offer me was to take the meds and mobilise when I can. I have seen two different physios who won't really touch me.
I've been encouraged by a friend to seek a second opinion at a different hospital but I would assume they would have similar waiting times if not longer as I am already under someone's care.

I am so frustrated with this...I have gone from a runner/gym fanatic to a sofa bound individual reliant on friends and my children.

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MrOllivander · 30/04/2022 10:55

Hmmm. I would be tempted by the op
My bulge increased and increased and then cauda equina. The surgeon said absolutely no point doing injections as it wouldn't work and it needed cutting out

ChristmasPuddingAllRound · 30/04/2022 10:59

Oh goodness, the consultant said he was happy to out me on the surgical list which to my mind meant that the bulge is clearly big but he was constantly stressing the fact that the lists are big and he wouldn't be able to give me a time frame.
Maybe I should go for that second opinion!

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ChristmasPuddingAllRound · 30/04/2022 11:01

I've added part of the MRI just in case anyone is good at reading them...

Could this be cauda equina
OP posts:
MrOllivander · 30/04/2022 11:44

Yeah I'm pretty sure (in my limited!) experience that's a surgery needed
This is mine and it just got bigger and bigger

Could this be cauda equina
Sunshinegirl82 · 30/04/2022 11:53

I have a very large disc prolapse at L4/L5 which causes caudal equinal compression. I'm lucky to have private health insurance and have just had a caudal equinal epidural injection. If that doesn't work I'll need surgery.

Private message me if you're in the South East, I can recommend a really good consultant (he does private & nhs work) who you might be able to ask for an opinion if paying privately is an option for you.

My sympathies, it's a really tough thing to deal with. I hope you feel better soon.

anotherdaynotanotherdollar · 30/04/2022 14:56

This was before my first op. Second 2 scans before ops were the same so pointless putting them up. I'll also post one that shows how it was after my last op.

Could this be cauda equina
anotherdaynotanotherdollar · 30/04/2022 15:01

This is how it is now. If I were you I would defo get a second opinion.

Could this be cauda equina
ChristmasPuddingAllRound · 30/04/2022 15:51

@anotherdaynotanotherdollar that pre-surgery scan looks awful. I never realised how horrific this condition is. I think I'll push for a second opinion although I dread to think of the timescales for that. Thanks for your help...it's been great to be able to discuss it.

@Sunshinegirl82 I'll PM you!

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Sunshinegirl82 · 30/04/2022 20:03

I've replied!

ChristmasPuddingAllRound · 20/05/2022 21:01

@Sunshinegirl82 hi, how did you get on with the injections? Any relief?
I had a private consultation today; that surgeon doesn't think it's worth getting any further injections and has recommended surgery. I am now freaking out over the risks. Cost is a factor but I really want to get back to normal for my children

OP posts:
Sunshinegirl82 · 22/05/2022 21:49

@ChristmasPuddingAllRound

Hello, I've had the injection and it has helped although I am not pain free. I have a follow up with my surgeon next month and will see what he suggests. I suspect surgery will be the end result, the prolapse is really big so realistically surgery was probably always going to be necessary in my case. The injection was a bit of a last chance saloon and I'm not convinced the surgeon really thought it would work but he agreed to give it a go as I wanted to try all options before surgery.

I know it's difficult but I know a couple of people who have had the surgery and have nothing but positive things to say. I know that's anecdata so should be taken with a pinch of salt but if the alternative is unrelenting pain and a massive reduction in quality of life then I think it has to be given real consideration.

I'm resigned to needing to have the surgery at some point. You have my sympathy, it's really hard.

ChristmasPuddingAllRound · 23/05/2022 16:30

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...

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Sunshinegirl82 · 23/05/2022 20:57

@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 · 24/05/2022 03:24

@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.

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ChristmasPuddingAllRound · 01/06/2022 07:05

@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.

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evilharpy · 01/06/2022 07:34

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.

catfunk · 01/06/2022 07:44

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

PermanentlyTired03 · 01/06/2022 08:05

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 Smile

ChristmasPuddingAllRound · 01/06/2022 08:48

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!

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Roystonv · 01/06/2022 08:58

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 · 01/06/2022 15:02

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!

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FavouriteDogMug · 01/06/2022 15:11

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.

evilharpy · 01/06/2022 15:22

@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.

ChristmasPuddingAllRound · 01/06/2022 15:23

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!

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