I Am Living With My Nightmare Late Diagnosis For Cauda Equina Syndrome

Hello to all users of this site! I am a 42 year old male who has undergone surgery for full blown CES just four weeks ago, after the NHS Accident and Emergency Hospital failed to diagnose slow onset CES some 8 months ago, when my chiropractor referred me after picking up red flag symptoms! I have been in pain and had many of the symptoms for months but was told that if I wasn't totally incontinent for both urine and stools, I definitely didn't have CES! I thought I was going mad!! It wasn't until I finally lost control of my waterworks in January this year, that I was rushed in to hospital for an MRI scan. The evidence was horrific! I underwent surgery for L5/S1 the next morning by which point my spinal fluid sac had been pierced and I believe that i was a millimetre away from full paralysis! I was discharged from hospital 2 days later and rushed back in for a blood clot in my leg the next day, and sent home the same night after treatment! My symptoms since my operation have been alarming, as I have got full saddle numbness still and this has now spread down the back of my left leg. I get spasms in my back and the pain is awful. Thankfully I can walk, but only for a few minutes at a time, before feeling totally exhausted. Climbing the stairs is like a full blown London Marathon! I have to self-catheterise 4 times daily and use enemas, as my bladder and bowels have been acutely affected. As a self employed heavy outdoor worker, this has really hit me hard, as I have always lived for my work. I would really welcome some advice and comments from fellow users around medication that will really help with the pain, whether physio really will help, and any other hints or tips that could make things at all easier. The physical symptoms and emotional turmoil are really straining at the moment, but I know it's early days. Thanks so much!
Hedgehog43 Hedgehog43
41-45, M
5 Responses Feb 9, 2013

I have the same condition same like you 6 years ago and slow improvement with increasing pain and yet no control on urine or bowel movement but i do not use catheter just i use the path room every 4 hours and that is ok

God bless you, thank you for your story. I'm sure and hope you make a full recovery.. I have heard, read and been told it can take as long as 2 years for you to get the feeling back and reverse symptoms from the lumbar damage... but if your careful and keep faith you will get there...
You sound like a strong person. Praying for you. :-)

Hello Hedgehog, my name is Ron and I have had CES for 8 years. This is my second attempt to send you a note of encouragement so pls excuse my redundancy if my previous post magically appears. If you haven't joined the Cauda Equina Syndrome Support Group on Yahoo Groups, I would encourage you to consider it. CESSG is a good source of information and support. I have had good days/years and bad days/years with CES. The last six months have been by far my most difficult due to severe nerve pain. I am hoping for better days ahead in that my doctor has recommended me for a Spinal Cord Stimulator (Boston Scientific) to help with the pain. Last year (2012) on the other hand had some really great moments in that I was able to ride my bicycle (I ride a recumbent using carbon fiber leg braces) over 3000 miles total and rode 100 miles in one day on 5 different occasions.
I hope that you see improved function in the days ahead. If you have questions of would just like to chat feel free to email me at: rjaz@bellsouth.net

Ron Swann

Dear Hedhehog43, I just wanted to offer encouragement and positive thoughts for you. Please remain hopeful that you will see some improvement over time. i am so glad you are able to walk, albeit short distances. Hopefully, you will continue to gain strength. my CES occurred in June, 2012 and I can relate to your emotional frustration. It really whips your world apart.

Hi hedgehog43

I had my surgery one month and a week ago, as you, for a misdiagnosed 3 months CES, about medication I'm taking nucleo cmp forte, doctor gave it for nerve stimulaton/regeneration. It has helped me to regain some strenght, sensibility, I haven't realized if it is effect of surgical nerve decompression or combination.
This week I'm beginning with electrostimulation for lack of strenght and sensibility, I'll tell you how it goes.
By the way I've been working on postural hygiene and abdominal strenghtening, that have helped me a lot with back pain and pain irradiated to my right feet.
If your wound has healed, something is very relaxing for back muscles is to have a heating pad over your surgery place for 20 minutes per day, muscles are stressed for surgery.
I suggest you to consult your ortho/neuro surgeon about physiotheraphy, they know what they have made you back there, and sometimes they know what you might need, or visit a rehab specialized hospital / doctor near you.
As you said, It's so early to get conclussions about how much will you regain, so hope the best and fight dialy, I know it sounds worn-out, but we have to deal whit this long term, and if you change your mind, you'll realize everything changes, I know is very difficult, may be the worst try out of our lives.
It tells you some who has stoped to cry and has begun to live some more, I'm in the same ship as you and understand what you're being through.

Best wishes