urinary retention after surgery for caudal equine syndrome

urinary retention after surgery for caudal equine syndrome

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Anonymous (not verified)
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urinary retention after surgery for caudal equine syndrome

Hi everyone, I am new to this forum. I would love to get some advice from anyone who has a similar experience to me.

I have experienced mild-moderate buttock/back pain on and off for over a year. It was nothing woth going to the docs about although i did go to a sports physio, who diagnosed periformis/sciatic nerve problems.

9 days ago i woke in the night to wee (I am 14 weeks pregnant, so weeing in the night at the moment is normal! When I tried to wee, a little came out but not much and it felt numb and odd. I knew something was very wrong. That night my back pain was much worse than ever before and I could not find a pain-free position, i also noticed that my bum and saddle area were very numb.

In the morning i went to the doctor, who (after some pressure from me) referred me to A and E with a letter to the spinal unit headed "suspected Caudal Equine syndrome".

Once assessed in A and E I was sent for an MRI scan and the results showed a large slipped disc at the bottom of my spine, which had broken off and was compressing my nerves.

They operated straight away and I had to have a general despite the risk to my baby.

I had a catheter in after the op but it was removed 2 days later and I still had as much bladder retention as before the op. I am still numb along the crack of my bum cheeks and down the inside of one thigh. I was given a second MRI scan which the doctors reviewed and said that i had "post operative nerve inflammation" and that my bladder would improve overtime. I was told this could take up to 2 years but worse case scenario might never.

I have been sent home with a catheter and told to wait for an outpaitents urology appointment, which i haven't got yet. My bumis still numb but i have no idea whether my bladder is any better.

I am only 32 and the prospect of living with a catheter forever scares the hell out of me.

I would love to speak to anyone who has had similar experiences to me, with good or bad outcomes. I would also like to here from anyone who has dealt with long-term bladder retention and what method/treatment they have been offered. Thanks for reading this.

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Webmommy (not verified)
Title: Member
I am sorry that you are

I am sorry that you are going through this. I have no advice but I am giving you a big mental hug.

sandi
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Joined: 06/20/2008 - 12:53am
Living with CES

Hi Unicorn,
I'm sorry that you find yourself dealing with the aftermath of CES ( Cauda Equina Syndrome). The numbness may get better or it may not. There really is no way to tell at this point, since you are still early into the recovery period.
The good news is that it appears that your surgeon was on the ball and got you into surgery right away, which usually means a better outcome than if you had waited outside the 24-48 hour window for nerve compression in CES cases.
I can direct you to a website that is specifically for sufferers of CES, and we are all in various points of either recovery or living with the after effects of CES if you think it might be useful to you.

I can't tell you right now, if your bladder will ever fully recover, but even if it does not, the worst case is having to use self intermittent catheritization. It simply means using a catheter to empty your bladder 4-6 times a day, and then discarding it. It is more of an emotional challenge than a physical one once you get over that part of it, it is pretty simple to do.
Feel free to PM me, if you want to ask anything or feel that it might be embarassing and I will do my best to answer you.
I've been living with the after effects of CES since 2006 , so I am well into my journey.
If you want that web address, PM me and I will send it.
Wishing you a great outcome in your own journey,
Sandi

“I know that in life there will be sickness, devastation, disappointments, heartache - it's a given. What's not a given is the way you choose to get through it all. "

― R.Jones

Caboose (not verified)
Title: Member
problem urinating

I HAVE BEEN READING ABOUT THIS CAUDA EQUINA SYNDROME, AND I AM NOT SURE WHAT I HAVE.

I LOST A KIDNEY IN 1985 DUE TO VERY LARGE KIDNEY STONE, AND KIDNEY WAS ROTTEN. MY LEFT KIDNEY HAS WORKED JUST FINE .....UNTIL THE PAST 6 MONTHS OR SO.
I HAVE REGULAR CHECK UPS ON THE REMAINING KIDNEY BECAUSE OF ONLY HAVING THE ONE.
I HAVE HAD 8 SURGERIES FOR VARIOUS CONDITIONS IN THE PAST 7 YEARS. 2 OF THOSE SURGERIES WERE....BLADDER TUCK, AND RECTAL REPAIR.
RECENTLY, MY CT SCAN SHOWED A "COMPLEX" CYST ON MY KIDNEY, OF WHICH I AM FOLLOWING WITH UROLOGIST.

HERE'S MY PROBLEM!!
I CAN NOT URINATE WITHOUT PRESSING DOWN ON MY BLADDER............WITHOUT BARING DOWN VERY HARD.......ETC.
I HAD THE URIFLO TEST DONE, BUT THEY MAKE YOU DRINK TONS OF WATER FIRST, THEN YOU HAVE TO GO IN WITH FULL BLADDER, AND THEY MONITOR YOUR FLO!
WELL.........."DUH!!" I HAD TO PEE BY THEN...........SO I FLOED LIKE CRAZY!! (LOL)
SO NEEDLESS TO SAY.....THE TEST WAS NORMAL.
HOWEVER.......EVERY TIME I EVEN GET UP TO WALK ACROSS THE ROOM...I FEEL THE URGE TO PEE. I GO IN TO THE BATHROOM, AND JUST SIT THERE.....SOMETIMES EVEN FALL ASLEEP WAITING TO URINATE!!! DEPENDING ON WHAT TIME IT IS. THIS IS BECOMING PAINFUL, AS I ALSO HAVE PERMANENT NERVE DAMAGE TO MY LEFT PELVIC AND LEG..........DUE TO A LARGE OVARIAN MASS 6 YEARS AGO.
IS THIS CAUDA EQUINA SYNDROME???
OR CAN ANYONE RELATE TO WHAT I AM GOING THRU?
THANKS.......CABOOSE

charry
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Joined: 09/06/2008 - 12:39am
Hi Caboose

You would need an MRI of your spine. Since you have major bladder problems you need to follow up with your Urologist. My brother had a 7-1/2 hour surgery and still has bladder problems where he has to press down on his abdomen because of the kink in the urethra. He still wears attends for that. Bladder retraining involves going to the washroom every 3 or 4 hours like on the clock. I feel sad about all you've been through. seeing my brother have all those problems also. If you think you have CES you should go to the ER where they have a Neurologist on call. I should also mention 25 years ago my brother fell 3 stories and shattered his back and has rods and screws in so they took it seriously when he had bladder problems. Take care. Charry

DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN

Sofia77
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Joined: 05/18/2009 - 11:41am
Hi Unicorn

I have a very similar experience to yours. I am 31, 29 when it happened. I was not diagnosed after major injury at work. I had herniated "massive" at L5/S1. I had to have two emergency surgeries. I have the Cauda Equina Syndrome. I lost my bladder. I was told that after afew years perhaps there would be some change? Nope not yet. My urologist did say that it could see improvement so.. I have to admit though over these total two years from day I went to hospital, things are better.

I only have to cath three times a day. So there is some improvement. Depending on if they operated within 48 hours of onset of symptoms. Mine was 2 weeks due to Dr. malpractice. But, expect some improvement. Everyone is different. Good luck. You can PM. Nice to meet you!!!!!

cherish22
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Joined: 10/01/2008 - 2:41am
I

never had Cauda Equina that I know of. But I just found out last week that my bladder is "dead". I suspected it was not working properly, but did not know it was not working at all. I do not leak or have incontinence, but I something was wrong.

Doc is very impressed that I a compensation mechanism whereby I also bear down and push with my abdominal muscles to empty my bladder. I do this efficiently and my sphincter cooperates and does not cause back pressure into the bladder. All very good.

I am in a little bit of shock, though, as I really didn't know. Doc wanted to get a baseline test.

What the above poster needs to do is have more than a Uroflow test. I had a urodynamics test. After you show up with a full bladder and urinate (the flow test), they put catheters in you and run further tests by filling up your bladder, having you cough, strain, and then empty. The high tech electrodes pick up WHAT muscles is emptying your bladder. Is it the destrusor (bladder) muscle? Mine was not. It showed clearly that my bladder never moves, never spasms, nothing. My ab muscles do all the work.

As long as I continue to be efficient with my emptying and there is no back pressure, I do not have to worry about self-catheterization.

I am curious though, now, as to what caused this. Doc suspects it is the nerve disease/all the nerve damage I have had. This issue has been going on for years. I just had no idea I was the ONLY reason I could pee. lol Thought my bladder worked sometimes. Nope.

Take care,

Cheri

medea
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Last seen: 4 years 11 months ago
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Joined: 06/29/2009 - 4:54am
Chronic incontinenta urinara

Chronic incontinenta urinara may not seem life threatening, but it can lead to serious problems and should also receive attention from a health professional.