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Cauda Equina Syndrome recovery after decompression

(19 Posts)
BackseatKnitter Mon 02-Dec-19 08:02:39

Long shot but wondered if anyone on here has experience/knowledge of recovery following surgical decompression/discectomy?

My op was on Thursday and I’m still very numb in the saddle area - not taking anything for pain as I don’t feel it even around the wound. Was given a bottle of morphine to take home so feel like they expect me to be in more pain.

Able to walk around and get on with bits but struggling with bowel function (sorry, TMI I know). I’m 33 with a one year old and a bit scared that this will be my future.

OP’s posts: |
RedDhalia Sat 28-Dec-19 01:31:05

I've just found your thread now whilst looking at CE posts.

How are you doing now?

I'm in the same boat really, I had CE 3 times in 15 days that started at the end of November so I have had varying different levels of numbness after each op.

Neuro bods have told me that the numbness is usually that last thing to go and that it can take up to 18 months to a year, and even then it may not happen.

It's shit eh.

FATEdestiny Sat 28-Dec-19 02:28:49

I'm a CES surviver. Mine was in 2006, so 13 years ago. I had 1yo and 2yo toddlers at the time. L3/L4 emergency discectomy.

Recovery all-in was about a year.

I had non-working bladder sphincter (so urine retention) for about 12 months. The first 4 months of that with a permanent catheter. Then I used single-use disposable catheters each time. Gradually I started weeing a little on my own, then a little more until I no longer needed to catheterise. Initially I couldn't tell when I needed a wee, but over time as my nerve damaged heeled this improved.

I also had a non-working bowl sphincter - So poo wouldn't come out by itself. I had to use a delightful method called 'manual extraction'. Which basically involved rubber gloves and pulling the poo out myself. Very degrading and I hated this. But bowl function returned quicker than bladder function and so manual extraction lasted about 7 months post surgery.

Pain, for me, was minimal. I was prescribed tramadol but didn't much need it. After the initial 6 weeks post-op, I was able to physically do as much as I could pre-injury without any pain or discomfort. My issues post-op were bowel/bladder related and psychological. Rather than physical pain.

Numbness was weird to get used to. I have permanent saddle numbness which continues to this day and will never heal. I'm used to it now so doesn't affect me. But it took time to get used to not feeling your bum cheeks. Sitting down was weird, especially sitting on the floor. Hard to explain what it feels like, but your brain thinks you're floating in mid-air!

13 years on, I have pressure feeling in the saddle area but not touch feeling. So I can feel if you like me with a stick but not if you tickle me with a feather. I am also prone to urine infections when I'm run down. If I'm tired or I'll, my bladder retains urine and doesn't get the message to empty fully so I have a tendency to get infections. Bladder infections are compounded by the saddle numbness - I can't feel burning when I see, or itching down there or anything like that. So the obvious signs of a water infection can be missed. I'm used to this now though and know what to look out for.

I remember the overwhelming feeling in that first year, you have my sympathy. But it will be OK, nerves just take a long time to heal.

RedDhalia Sat 28-Dec-19 09:06:47

@FATEdestiny did you used to be (and possibly are) the guru on the sleep boards? If you are the same person then you helped me hugely with my then baby - she is now 3!

Thank you for sharing your CES scenario, it sounds absolutely horrific. I have been lucky in the fact that my surgeon has said I have a larger than average spinal cord, and without that I would have been paralysed immediately. All 3 CE episodes have resulted in the disc material going from the front to the back of my spinal column which is unusual. Unfortunately my disk has a defect, so usually the remaining disc has a small opening which the disc material came out from, and will re-seal, my opening is so big that it can't re-seal, hence why I had it 3 times in 15 days. On the 3rd op they have removed my backbone so the nerves can no longer be crushed by the disc material (we already know it's prolapsed for a 4th time) so I may need a fusion next year.

I'm equal pain and numbness currently, I'm on codeine, paracetamol, pregablin and senna, and the pain isn't too bad. I think though the pain is the sensation starting to come back and the reaction to the surgery?

I'm also having issues of numbness coming and going around my public bone. It's a bit scary as I'm not sure if that should be happening, but I guess all sorts of weird crap is going to happen.

It's a horrible condition, and I just thank my lucky starts that I've come out of having this 3 times remarkably well overall!

thanks and wineto you both.

ClientListQueen Sat 28-Dec-19 10:22:18

I also had CE (15mm herniated disc at L5/S1)
Took a 5hr op to sort it but I've been left with some numbness in my right leg. They did (as above) say a year for full recovery so it's v v early
I had no pain relief post op and didn't need any so that's not too unusual

FATEdestiny Sat 28-Dec-19 11:18:17

Yes that's me RedDhalia. I don't spend so much time around the sleep board now that my youngest child is older, but do dip in every now and again. Glad I could help you blush

RedDhalia Thu 02-Jan-20 18:51:46

@BackseatKnitter

Saw you had found the other thread but as this one is quieter I thought I'd post here.

Glad to hear 3 weeks down the line you are doing so well!! I am walking but with a huge exaggerated limp, my leg muscles will simply not go in a straight line, same with going down the stairs.. I have to go bad leg first as I simply don't have the ability to put that leg down first. Odd really as after the first surgery I could within a couple of days.

I've been referred to a spinal injuries unit so I'm hoping they maybe able to help with this when I see them.

Are you walking reasonably normally now then?

BackseatKnitter Thu 02-Jan-20 20:01:16

RedDhalia Thank you for posting here, I didn’t see the updates for some reason and assumed no one had answered!

But I’m not doing bad at all, my walking is still quite laboured and I have the left left and saddle numbness but the pain is gone which is a huge thing for me. My bladder function wasn’t really affected but I’m cautiously optimistic that my bowel function will go back to normal as it’s 90% of the way there. My main issue is getting up and down stairs as I can’t trust my numb leg so have to go step by step and hold on for dear life.

I went swimming today for the first time since the op (5 weeks ago) and it helped a lot as it seemed to loosen my right leg - I’d messed it up by over-relying on it when my left leg wasn’t working. My physio starts the week after next and I see the specialists then, too.

It strange but my sister had almost the same thing and her leg next regained feeling so I’m expecting I will probably be the same. Hers was never diagnosed as CES but she had the numbness and the same operation I had.

I can’t believe you’ve had it three times. I didn’t know whether it was something that could come back so will be sure to ask when I see a doctor. I hope you don’t end up needed a fusion as that sounds a lot harder to deal with.

OP’s posts: |
Bunkerlife Fri 03-Jan-20 02:51:53

Another CES survivor here but at the extreme end, complete foot drop, Sadle numbness and issues with both bladder and bowel. It's nice to see stories of good recovery because I wouldn't wish my situation upon anyone.

RedDhalia Fri 03-Jan-20 09:46:44

@BackseatKnitter

Has your physio been organised for you by the hospital? Do you mind me asking where you are going to see the specialist? I'm going to
Southport Spinal injuries unit which covers the north west and is a complete trek away but I'm not there until the beginning of Feb!!

@Bunkerlife

I'm so sorry to hear that you have taken the full brunt of CES. Do you have good support?

💐

BackseatKnitter Fri 03-Jan-20 10:15:42

RedDhalia It was yes, although I was seeing a local physio at the GPs before. I’m going to two sets of specialists - my surgeon and a specialist CES nurse I saw the day after my op at Nottingham QMC, and then another set of specialists at the Northern General Hospital in Sheffield who I was told deal with CES more. Both of them are a trek as I live in Lincolnshire but hopefully it will be worthwhile! I hope your visit is worthwhile too 🤞

BunkerLife was the severity of your condition unavoidable or was it due to delays in diagnosis/operating? It must be hard to live with, do you qualify for any day to day help? Have you had contact with the CES charity?

OP’s posts: |
Bunkerlife Sat 04-Jan-20 06:51:56

@BackseatKnitter @RedDhalia I do have good support thanks, I was left so badly damaged because of long delays in treatment. I have had contact with the CES charity and to be quite honest I don't rate it very highly, I found it was a bit competitive in an odd way. Who took the most pills, who was the most severely affected and it just wasn't for me. I have found the Spinal Injuries Association and the Back Up Trust to be amazing.
There is a much more "can do" attitude among the spinal injury world which appealed to me. Life is hard sometimes but it carries on so I want to get the most out of it.
I would push hard for a referral to a spinal injuries unit, CES is a spinal cord injury and they are the absolute experts.

BackseatKnitter Sat 04-Jan-20 21:09:03

BunkerLife I’m glad you have support smile

Surprised to hear that about the CES charity as I used their websites for my initial research, but I didn’t have anything to do with them directly so I don’t know much about them. It’s a shame, though, but glad you’ve found better options.

OP’s posts: |
RedDhalia Sat 04-Jan-20 23:41:19

Hi guys,

I looked at the charity and joined the forum but it's non active.. my constant googling has, however, found a meeting that's being held in Manchester at the end of Jan for CES survivors, so I'm taking my ass to that purely to see if I can can get anyone to recommend me physio or Pilates near to me. My right side is also playing up now, mainly due to the stairs I think.

I am also shattered every night but can't sleep, it's really odd and annoying!

Do you find you are far worse when you wake up? I certainly am and then for the rest of the day my leg is tight.. like there is not enough length of nerves/tendons etc in there. It's also like it's constantly going to cramp at any second but doesn't.

I'm 3 weeks post the 3rd surgery and leg wise I'm no different. Feeling a bit lost as to what I should and shouldn't be doing each day in terms of activity.

My 3 year old doesn't let me ponder on anything, she's a constant source of both frustration and hilarity.. and keeps me smiling!!

Bunkerlife Thu 09-Jan-20 03:40:16

Today marks ten years living with CES

Icanflyhigh Thu 09-Jan-20 05:00:10

Hi OP I'm just 2 years post surgery for discectomy and had some spinal compression following that
It took approx 3 months for numbness to shift, but even now I only have about 95% and some numb spots on my butt cheeks!

RedDhalia Thu 09-Jan-20 08:58:46

@Bunkerlife I hope that you are feeling ok today lovely. 💐

@Icanflyhigh that is good to know! My numbness down my left leg and foot isn't getting any better, last CES surgery was 12.12.19 so still not near the 3 month mark.

I'm in a bad way with my walking today, my left calf is so "tight" that I can't put my foot on the floor - it just feels like there is not enough tendons/nerves etc in my leg to do so. I guess this is going to be an up and down type of recovery.

Bunkerlife Thu 09-Jan-20 09:53:12

@RedDhalia yes thanks today has been a good day one for living to the best of my abilities.

RedDhalia Thu 09-Jan-20 10:57:34

@Bunkerlife fantastic attitude!

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