Devlyn's Story

Devlyn's Story 

Hello everyone. I came across this website a few days ago, and I finally decided to join so that I can get in touch with

others who also have CES. I’m a 37 year old male, living in NJ and I’ve had CES since May 20th 2013 and I had my

emergency surgery on May 21st 2013. Right before my surgery, I had basically become kinda’ paralyzed from the waist

down and after the surgery, I had/ have the following issues: right foot motor loss, numbness/ limited sensation in the

saddle area and a specific line/ dermatome across the back of my legs, urinary stress incontinence, and interesting

bladder/ bowel issues. This post will be a long one as I have a lot to state!

Regarding sensory/ motor deficits – I have gained some sensory function back in my right foot (big toe, 2nd digit, area

between big toe and 2nd digit, a section of the sole/ heel, etc and I can distinguish between warm/ cold water now),

and when I try to move it feels like I’m moving it on the inside but it’s not really moving aka motor loss!   My butt area,

and a specific section of the back of my legs still has numbness. I have gained a lot of sensory function back in my left

foot. I’ve been going to physical therapy (3 times a week) for almost 1.5 months now and my strength is slowly

returning. I walk with a walker cos’ I feel safe with it, and I use a wheelchair for long distances when we go out to

places where I would have to walk a lot. Lately, my therapists have begun training me to use a cane and that’s been not

that easy so far but I’ll get there! I am now able to walk independently for about 10 odd steps or so, as long as I feel

safe, thanks to an AFO brace for my right foot. I really want my right foot motor controls to return though! Using stairs is

a challenge still but I’m managing with a lot of concentration, and a single crutch for support. Balance is still an issue

but my core muscles are still weak so I’m hopeful that this will improve in time. My left leg is stronger than my right leg

currently but I’m hopeful that the right leg will also get stronger in time. I exercise for roughly 4 hours at home every

day. I get tingling/ warm fuzzy feelings/ electric jolts in all the areas where I’m numb or have limited sensation (butt,

back of legs, feet, etc) – this happens almost every night/ sporadic moments during the day and I can tolerate it;

actually, they say it’s a good thing implying that the nerve pathways are not really dead and whenever I cannot tolerate

it, I take a half dose of Tylenol and go to sleep like a happy camper. I’ve been lucky on the pain front so far as I’ve not

had any back pain ever since my surgery. I’m very happy with my surgeon, and my physical therapists and the hospital,

and rehab center staff.

Regarding urination – I can urinate on my own but not automatically, rather by relaxing my pelvic floor muscles and

using my abdominal muscles and I do empty all the way (was verified by bladder scanners) – I do get the urge to

urinate but it’s flaky at times in the sense sometimes I get the urge when I have to go a little and sometimes when I

have to go a lot. What sucks is that I have stress urinary incontinence such that when I get up from a chair really fast or

if I cough really hard or if I exercise a lot, about 2 small drops worth of leakage occurs and I believe that’s because of

the weak pelvic floor and potentially due to the urinary sphincter dysfunction – depends underwear help!  Sometimes, I

think I’m urinating like I used to do before but then I question myself cos’ who pays attention to how they urinate or

used to urinate really?! So, I urinate when I think I have an urge else I try to urinate every 3 hours or so. I drink

cranberry juice every morning cos’ my wife thinks it’s a good idea to do so.

Regarding poop – I never know when I have to go and since I use the abdominal muscles to urinate, I kinda’ have to

always sit on the toilet rather than stand cos’ that’s the very same muscle that actually pushes poop out. So every time

I urinate, I also prepare to poop just in case – I either hear poop fall in the toilet or I hear my butt-hole expand or I take

a toilet paper to check and if magic has happened, I sit for some more time to try and empty my bowels!   Lately, I’ve

been getting this interesting sensation where I can tell if gas/ pressure is building up in my plumbing and sometimes I

think I have poop up my butt but this feeling again has been flaky so far but I’m hoping it’s a positive sign! I don’t have

fecal incontinence, and I’ve only had 3 accidents since my surgery which was due to some weird laxative mixture I took

to move my bowels – I haven’t used any laxative or stool softener for almost a month now BUT I do eat very clean, and

eat salad/ vegetables every day for the fiber! What’s been working for me is toast with butter/ jam and/ or cereal with

coffee for breakfast, soup and salad or sandwich and salad for lunch, and a good dinner which is a mix of protein/

carbs/ fiber, etc such as fish, meat. I don’t use any fun ingredients such as tobasco, ketchup, mustard etc just in case!

Lots of water, and movement/ walking helps in bowel movements too. I go poop almost every day or every other day

for the most part and I’ve read that 90% of the human population fall in the range of pooping from 3 times a day to as

little as once in 3 days so at least I’m in the general population so far! As far as gas goes, sometimes if I feel the

pressure feeling I try to do a kegel move to try and hold it in, else if I have no idea then the fart thing just happens and

frankly, I don’t care! I’ve begun wearing this funny shirt that clearly states “I fart in your general direction!” 

Regarding my emotions – What can I say? I’m 37 and I certainly didn’t expect this. I have a wonderful wife, and a very

supportive family. I know this is going to be a strange statement but my wife is so supportive about this whole thing that

I actually feel guilty for putting her through this and messing up her life. I don’t know why I feel this way, I love her so

much and the family too (her side, and my side) and I hate being a burden on anyone cos’ I was so independent before

and sometimes I wish I had a one way ticket to see the almighty on the operating table so that things would’ve been

easy for her and the family!   I guess the one way ticket was denied so here I am still alive trying to figure out my

emotions, and expectations for the rest of my life. I’m a very positive guy and deep down, I think I’ll make a good

recovery but what I lack is patience and they say it could take up to 2 years or longer to see what kind of progress can

occur, and it’s only been roughly 4 months now! I get frustrated every now and then but then I force myself to keep


Regarding work/ other things – I did dishes recently in the kitchen and that felt awesome. I actually ran laundry today

so I felt a bit more productive. I have started to go out to restaurants, stores, etc to get some form of normalcy back in

my life with the aid of the walker/ wheelchair. I had my first haircut, since my surgery, 2 weeks ago and that felt so

normal. I’ve now been to 4 family member’s homes and just getting in and out of their homes felt so good!   I should be

starting to work from home in the end-October timeframe if my surgeon/ therapists clear it – my work (desk job in IT),

and co-workers have been extremely supportive and I’ll be allowed to work from home for as long as it takes for me to

get back to “normal” or a “new normal” whenever that happens. I have to go thru driver rehab training eventually to

either learn to drive with my left foot or some other way – maybe the right foot will wake up?:)

So this is my story thus far folks! I would love to know others who also have CES and if they have experiences/

comments to share with me? I would love to hear from you online or in person! I AM going to beat this thing in time!!!




Cauda Equina Syndrome Sufferers Global Support Group