My CES Story - 1 week in

Brain and nerves
1

Hi my name is Adam, 34 years old, and have been healthy, fit and strong for all of my life, never broke a bone or had surgery.

My career is going great and I've been married to the most amazing women for over 4 years who gave birth to our first child, a beautiful baby boy on 18th November.

For the past 8 months or so I've had sciatica, which I assumed was from running or the seating position of a new car. Stretching always relived the pain and I thought nothing more of it as it was easily bearable and only impacted me when sitting for long periods.

Due to the constant bending to pic up my baby boy, I developed a pain in same area of my sciatica, nothing extreme, just a typical back strain and was struggling to get a full gait with my left leg. As I was on paternity, on November 28th I decided to see an osteopath to finally sort the issue out, as having a new born was certainly not going to help.

The treatment seemed ok and I walked out slightly less stiff. The next day I was ok, similar pain when walking but a bit tender around the massaged area. That evening I had a bit of a spasm in my back where the pain was when bending over using the toilet, but once I was up I was fine and thought nothing more.

The following morning I was struggling to get out of bed, I got 3 steps down the stairs and the spasm hit again, but 10 times worse. No way was I making it down stairs then. I made it back to bed to releave the pain. This went on at intervals throughout the day, trying to go the bathroom etc, and at one point I made it down the stairs (no spasm) and back up. I could only stand for short period (30 secs), but as soon as I was back lying down I was fine. Since it was a bad back I was trying move every hour to not seize. 5pm, I couldn't even try to get out of bed without feeling the spasm and pain. 6pm came and I could get out of bed no problem, pain but no spasm.

I went to the toilet at 7pm and started to go. Standing still was extremely painful and then the spasm came, worse than ever. I stopped and headed straight for the bed to get flat. I managed to get on the bed and get flat and then everything started to go numb from my waist down. My feet were locked, my legs had little movement and my groin and butting area went all numb.

As like most, I've never heard of CES, and hadn't got a clue what was happening. I instantly knew something was wrong and dailed for an ambulance.

2 hours later I was in A&E, where a doctor had recognised my symptoms after waiting 2 hours in the queue. By 3am I had been ambulanced to a specialist spinal unit, still unable to move my feet/ankles and still the numbness in my groin and buttock area.

An MRI detected a L4-L5 disc hernation. I had surgery at 1pm that day, 18 hours after the initial onset.

Having read more about CES and the crucial window to avoid lasting damage, I feel very lucky to have had surgery so quick, and even more so to get moved to a rehab centre within a few days.

I'm now recovering in a Spinal Rehabilitation unit, 8 days after surgery. My legs are moving, bending at the knee (but not in a scissor motion), and both feet have drop foot. The numbness to my groin and buttock area remains.

Since the surgery the movement in my feet has increased, I can wiggle them maybe 5mm, and the numbness may have decreased slightly on the outside of my buttock region and a bit in my groin, but a great deal remains. I can't voluntarily urinate, but can tell I need to go. I have some feeling in my bowel function but no proper control.

I can stand and walk awkwardly taking small steps with a frame which is extremely tiring. I'm working on building the strength back in to my legs, but toilet troubles have halted that progress.

I'm trying to stay positive and have my family and friends to support me, but as I'm sure you can imagine, missing out on those precious moments of a new born is hurting, but at the same time motivating me to become stronger without overdoing it.

Over the last week or so I have researched everything I can on CES and read countless stories, and realise I am lucky to have some movement and to have received surgery in a timely manner. I am still in the early days and see months of hard work ahead to try and function more independently. I just wanted to put my story out there and would appreciate any advice.

Adam

2

hi Adam I've had exactly the same as u but I had a prolapsed disc I hope you can get sorted I suffer very ad nerve pain amy questions u would like to ask fire away

3

Hi Marie.

Thanks for the reply. Did you manage to regain any mobility, drive etc?

How did yours happen if you don't mind me asking, did it occur after a treatment of sorts like mine? If so did you look at the compensation route?

4

my gp prolapsed my disc right out manipulating me on the floor in my house he was also supposed to be a trained chiropractic too so I was completely numb from the waist down they had to get me to hospital and operate within 48 hours or I would have been paralysed what happened to u if u don't mind me asking please Adam

5

and sorry Adam I asking what happened to u and I don't need to know because it all in the beginning of your discussion lol and all my symptoms are identical to yours is walk now very slowly I can't run I can't walk properly tend to walk on outside of feet and suffer very much with nerve pain I hope this doesn't happen to you hun marie

6

I was 34 when it happens to me, prolapsed disc L4/L5 i went in two days later for surgery as my GP told me to go home & take pain killers, I'm now thinking i should take legal action but not sure where i stand with this, I had the numbness, but no paralysis, and still suffer slightly by the loss of feeling below, which has affected sex unfortunately but not atogether, after surgery i did get my feelings back mostly after about 3 weeks, i've read that on other posts too, just not completely, Seems you have it a lot worse with the paralysis as well, perhaps after a little while the feeling may come back like mine did?

I really do feel for you, hope you get it sorted soon and return to the little one congrats on your baby btw

7

Hi Adam,

You had a classic presentation which may have made it easier to spot. So glad you were taken care of quickly. CES is a strange one. Almost everyone has varying degrees of permanent symptoms and some recover fully. How the disc herniates into the Cauda Equina nerves is variable. I had an L4-L5 like you. My disc herniated at work and I felt kind of a stab in my low back but my left leg felt like an injured muscle. I had horrible sacral pain. My buttocks felt like a really bad tooth ache. About 24-48 hours after I could not get out of bed and had to roll down onto my hands and knees and use the bedside stand to stand up. Unfortunately I went 42 days before surgery. I had drop foot numbness bilaterally and dribble urine. When I finally got my work mediated MRI I had a central/paracentral extrution with a mass effect on the nerve root. my injury was 2 years ago. It can take 2 years for the nerves to regrow. Be patient. Get help from a bowel and bladder specialist right away. Best wishes!! And congratulations on your new baby!

8

Hi Adam,

I know this thread is old, but thought I would give it a shot. My Husband recently just had this happen to him and was able to have surgery within 20 horus of the numbness onset. He luckily is able to move and will be doing physical therapy to increase his strength and reduce his pain levels. His main problem is the numbness issue in the saddle area. I was just wondering how your progess has been since you posted last.

9

Hi,

My progress came on quite quick after maybe 5 weeks. 2 months after I was able to walk with a stick, which I fully believe was down to physio with the great spinal team I was refered to. It was hard work and painful, but having the skilled people to advise and motivate helped so much. I've since grown stronger every week and was back in work after 3 months. Ideally I wish I could have had more time off but I'm self employed so didn't have the option. My mobility further improves every week, although I can't run, but I can hope maybe one day.

My numbness remains unfortunately (7.5 months after); there are signs of improvement as I have a degree of control now, but I'm still hoping for some further improvement in this area too. I feel like it is, so you never know, but I have been told at this point in time the chance is very low and the damage probably permanent.

Your husbands recovery sounds more promising since he can walk after 1 week, so you never know. Every injury is different and also the age, fitness and health is a factor. All I can say is that although it's not ideal, there are discreet ways later to manage the bladder and bowels to allow people to socialise etc and try and live a normal life, so don't get too down about it. I know I did, as I'm sure everyone in the situation does, but there its not end of the road.

I hope the recovery goes well, and tell him to push through the pain and try to do some degree of physio every few hours in the day and evening.

10

I hope you recover well - so glad to hear that your symptoms were recognised promptly and that you had emergency surgery; many GP's and A&E Clinicians miss the red flag symptoms of Cauda Equina Syndrome and end up in a much worse condition; I run medical negligence claims and specialise in this area. Good luck Adam.

 

11

HI there. Not sure if anyone responds to this thread but here it goes. For those individuals that did physical therapy what type of program did they put you on. Be specific if you can. I had an emergency lamenectomy on my l4, having had no symptoms or knowledge of ces. Waking up from my surgery i had a lot of numbness in both my feet and mid section and virtually couldnt move and had no control of bowels. It got worse in recovery. It turned out i had a hematoma that was pressing on the caudal area. Three or four days after the first surgery i had surgery on my l5 and partial on my s1.

Since then ive been looking for answers to the big question. What do i do to get better? All ive found was surgery as a treatment option. Thats what caused mine! So to me pt is the only viable option i see. Ive been building strength but ended up with staph on my spine post op. Another surgery and now picc line runni.g antibiotics 6 weeks 24/7. Got 3 weeks left now and got a blood clot above my heart now. Still upbeat. At least trying. Had to use a walker for 2 weeks, then just used it for long distances. Now i dont even bring it with me. Walkin good as long as its slow, and on flat ground. Lol wow i just vomited way too much info for a simple question. What exercises work best for you out there

12

Hi,

Stretching was key for me, hamstrings and calves and still is.  I’m nearly 18 months post op, and I’ve noticed muscle cramps are much more common now.   During my time in hospital i was the most flexible I’ve ever been, but I must admit I’ve let it slip due to work and looking after my son, but he certainly helps to keep me fit.  

Sit to stands also was good for building strength. When I left hospital I was doing two sets of 100, and continued with them until my walking improved.

It’s best to try and get referred to a pt centre (such as Southport) that specialise in spinal injuries.  They will be able to help so much more.

13

Shocking; I wish you all the very best with your recovery

14

hi Adam not sure if this will reach you but was just wondering where your at now with recovery? any changes? I’m just at the start of my recovery now cheers

15

Hi Thomas,

its been a few years now so my recovery has plateaued, but in general I’m quite well and have a fulfilled life, travelling abroad for work (even during Covid) and living not far off as I did before, less more sporting activities, more for safety rather than not being able to do them. In fact no one would not even know about my injury now, unless i told them.

I still have some nerve damage in my legs but this is not noticeable except to me, my mobility is good, i can walk for miles no problem and have even managed to get a running gait back, but I tend not to run now but instead focus on my core strength.

My bowels have never fully recovered, but managing this has become second nature, having minimal impact on my life.

I feel very lucky, as to where i was and where i am. Every SCI is different and affects people differently, some cases are much more severe than mine, other not so much.

I hope you well in your recovery, it takes time and is not instant, you have bad days and good ones, the one thing i learned is that people and family can support you, but ultimately the recovery is down to you, they cant do the rehab/work for you, dont stop pushing yourself, i never did and luckily it worked out.

Adam

16

hi adam, I am unsure whether you would read my comment, but giving it a try.
I am 22 year old , last month I was diagnosed with Cauda equina. Even the doctor was surprised to see this happening at such a young age.

I am gaining the strength in my legs though I am really concerned for my sexual life.
I can certainly empty my bladder by applying pressure but the sexual functioning is a bit impaired ( no release of sperm, not attaining full erection).

I really understand that it’s a very very private question, but i am concerned about my future and married life. could you please share some progress in it in the long run.