life is very hard to deal when you have this.

I'm grateful there are stories of others experience. Their positive, hope filled, and often invaluable information. Thanks for sharing this. I wish for you a life free of so much pain. 😶🌷

Your story is almost identical to mine. Will describe mine here for those who want to hear. 1. Was in a train accident in 2015 Nov, broke L4 L5 S1 S2 S3 (believe you me, S1,S2 were shattered to pieces.) 2. Had surgery in Jan '16 in the US (after 2 months in trauma center in India). 3. Went through Urinary Retention, Cathing, 2 serious UTIs, Constipation, Saddle Anaethesia, Left foot numb, Feet muscle weakness/thinning, Intense pain (managed my morphine/fentanyl) etc. The whole shebang! 4. 5 months after surgery, bladder functions started improving and within months was very close to normal, and am 100% normal now. Left foot numb but can walk normally, no one can tell I have serious CES. Bowel Functions have shown NO IMPROVEMENT and I use castor oil every third day morning to clear the colon. Painful indeed. Nothing else works for me. 5. Other than that I am close to normal, no pain meds, I tolerate the pains that I have in the back upon standing, bending, lifting, twisting etc. When I am in bed, no back pain at all, some leg pain sometimes comes up. 6. Lastly, reproductive functions ( I am a male 50), was zero for about 1.5 years, no sensation, no erection, no nothing. It was depressing. BUT, things started improving to the point that I am , I would say 90% normal. So for all these reasons, I cannot complain about the pains (back and leg) that I have to endure on a daily basis. I feel damn lucky. Many of the folks I know (1000s in the different forums) have not fared so well. Wish all of you (brothers and sisters in CES) luck and good recovery. /cheers.

@maltimoto

5 жыл бұрын

What you describe sounds like a miracle! It gives others hope. Good luck!

@shkarazad97

3 жыл бұрын

Legend i hope doing even better now a days god bless you

@makeupbykhani8178

3 жыл бұрын

How r u doing now?????

@makeupbykhani8178

3 жыл бұрын

How r u doing now sir? Any updates?????

@ahmedhusseinny

3 жыл бұрын

@@makeupbykhani8178 Will be 5 years since the accident which caused my situation. I am doing extremely well. Mild pain, minimal impact on movement and lift/bend/twist. If you have any specific questions, I will be happy to answer.

Just got diagnosed. I knew my back was bad but so many doctors said rest, take a break, stretch. Thank goodness my new doctor ordered x-ray then MRI which diagnosed it. Thanks for sharing your story. I see the surgeon soon for the consultation.

@ryno411j9

4 жыл бұрын

I wish you the best of luck. I was diagnosed last November. I did physical therapy for about 2 months. I've fully recovered from my injury the only issue I have is numbness and occasional pain in my left big toe.

Thanks for the vid and best wishes. I've battled this for 8 years. It's been a nightmare and my help resources non-existent. Bowels, bladder, guy parts, balance, leg strength, and crippling pain. At this point any relief would feel like a miracle.

@sarcasticmeeeeee5499

2 жыл бұрын

Hey how are you now?? and I wanted ask that all symptoms comes together ??

@chrislegner4816

2 жыл бұрын

@@sarcasticmeeeeee5499 Heading to Mayo here in a few weeks to see what is next. Thanks.

Thank you for sharing your experience. I suffer from ankylosis spondylitis and have been for 39 years only recently I could not urinate, eventually catheterised, after an mri the have found a decompression. After watching your vlog I have decided to go for the operation, as you have mentioned, the consultant did mention this that, there was no guarantee that the damaged nerves would repair, but i am still going for it, and hope for the best. I wish you the best of health. Thank you again for sharing.

@sarcasticmeeeeee5499

2 жыл бұрын

Hey how is your recovery now??

@naz4140

2 жыл бұрын

Hi, thanks for asking, I didn’t go ahead with the operation, I am still undecided , just been for a check up this week and there is no change, my urine problem has improved by 80% I am not catheterised any longer, I do feel pain in the feet which I think is because of the compressed spinal cord, if that gets worse I will probably go for the operation. How are you doing?

Hi Owen, thanks for sharing. I have nerve compression on L4-L5 that causes sensory sensations in my saddle area. Did you have that as well?

To all, a year, 2 years down the line how do you feel now? Any improvement bowel bladder numbness ect??? I'm 7months post op for ces and I'm just gathering information myself as Dr's don't seem to know anything... Any help advice would be appreciated x

Thank you so much

Hi my cauda equina came on suddenly no history of back pain came on couple of days later i couldnt pee had emergency surgery have permant nerve damage in left leg

Hi, I am faxing the same issue as well, it's been more than 2 yrs, can u tell more about accupunchure?

@johnspark5285

4 жыл бұрын

They stick tiny needles into you

Thankyou

thank you for posting. You give me hope. I was diagnosed with CES in October 2016. My main thing I hate is my numbness in my foot and saddle area. How is your numbness doing?

@sardarsami4353

7 жыл бұрын

newstar777 I 've this issue from the time of my birth. .there is numbnes in my right leg and good ...now I'm 20 years old ....I never feel any significant pain.....but now I'm looking for any treatment is there any chance......????

@tribeofjudah6367

7 жыл бұрын

newstar777 wow i have a 2month that born with cms ,did you have any surgery done as a kid

@MegaPianogenius

6 жыл бұрын

Kelli Kay I too hate the numbness in my behind it's not completely numb but very uncomfortable especially at night and I have tingling down right outer calf of leg I've had it 16 years now and never gets easier The doc said take amitriptyline but I don't want to have side effects

@MegaPianogenius

6 жыл бұрын

the strange numbness in saddle area is the worst i cant sit down for more than 2 minutes without having to stand up as its too uncomfortable

@ahmedhusseinny

6 жыл бұрын

My saddle anaethesia improved a year, to the point that I am normal, feel very slightly numb but can sit endlessly without problems, but when I was suffering, I used this gel seat which made a world of difference. If you want to know details PM me.

Does anyone with this feel better when lying down?

i have recently been diagnosed with CES. going on 3 months. Did this affect your financial status. Did you qualify for any sort of disability? Im the sole provider and worried about holding on to my employment.

Hi, my mother also suffering from CES, she already undergo surgery, its been 7 months already but the problem is still there which is - no bladder and bowel control. Did you already recover? She's still using catheter and it is uncomfortable seeing her still suffering. If you have any suggestions please let me know. I want her to use intermittent catheter.

@archambeaultjl

5 жыл бұрын

Ma. Rebecca Garcia SewS1

@beenawaqar

6 ай бұрын

She can do self catheterization...I have done with long tube by inserting in the urinary place....now urine is coming without any sensation....70prcnt urine problem is resolved but not completely... bowel problem is still same ..

MY PROBLEM MOSTLY I KEEP GOING AT NIGHT WITHOUT NOTICING IT. DIAPERS HELP BUT IT GETS FULL AT VERY EARLY DAWN AND I END UP WETTING THE BED ALL OVER. DURING THE DAY I HAVE CONTROL (OCCASIONAL ACCIDENT) BUT ITS HARD TO POO AND PEE.

@Smokillo

2 жыл бұрын

@@johnspark5285 he's just sharing his experience of CES...why the rude comment?

Hi Owen! How long before you were able to walk normally? Did you regain normal bowel and bladder functions? Do you still have numbness? I had two surgeries in 2016. Discectomy and laminectomy and then spinal fusion with bone graft. I was in the hospital for 45 days, and now I am 7 months post op. I still cannot tip toe, and there's a lot of numbness. I also get a lot of stabbing pains. I do have medications for neuropathic pain, but still, they're there. Bladder and bowel are also weak, especially the latter. I would do manual evacuation or digital stimulation daily. I also have acupuncture twice a week. There is not much support groups for CES here in the Philippines. Most people think I just had a bad case of slipped disc. Anyway, I hope to hear from you. It's reassuring to see someone who has CES doing Zumba and having an active lifestyle.

@bogey355

7 жыл бұрын

Kai Peñaverde n

@IgobyOwen

7 жыл бұрын

Hi Mica, I apologize for taking so long to reply to your feedback, I have been back to work and it's taken over my life. O.O I have regained maybe 75% of my bowel and bladder functions.. it still takes time for me to use the restroom. I was able to walk again within 1 week of surgery. I couldn't stand thinking i wouldn't be able to walk so i literally willed myself to walk as fast as i could. I still have some numbness around my saddle region. I think that just takes time if it ever heals. All I can say as far as your functions is that allow your body to regain your functions and don't lose hope or give up. The acupuncture helped me a lot when I had it done, mostly on small episodes of me getting back pains but those rarely happened after my surgery. I can count 3 occasions in 7 years where I felt so debilitated. The tiptoeing didn't come back to me for years. it's only last year that i started tiptoeing. I'm not sure why you're still getting stabbing pains but yes allow your body to heal. Also look into your diet and see if an alternative healthier more organic diet helps. It has helped me going into Paleo then Keto. It might not be for everyone but it did improve my healing process. I wish you all the best and keep in touch.

when there is CES is it really necessary to undergo surgery?

@IgobyOwen

3 жыл бұрын

When I had it it was an emergency situation as I lost my bowel functions in 24 hours. I was told that in another 24 hours of no treatment I would have had permanent damage. It’s been 10 years since my surgery and I am still recovering. I don’t know how much more I can recover.

@Kat.....

2 жыл бұрын

@@IgobyOwen how are you doing now, in general? Thanks for sharing your story

What a bout sexual function??? Did u recovered?? Or not please explain

@IgobyOwen

7 жыл бұрын

Well sexual function is not back to normal but I am able to orgasm. You almost have to get creative and for me if I don't have feelings for someone it doesn't work at all. it becomes more psychologically involved than just physical.

@ahmedhusseinny

6 жыл бұрын

As I said earlier, I was out for over a year but returned to being almost natural and normal. I would not have sensation and erection. Was very depressed and sad. 5 months after surgery, ,tried a lot of things, from watching porn, to just imagining (purely mental, since no sensation at all).... and then things started to come back, slowly. But I am happy to report, I got almost totally recovered. I am 50 but you guys are young, so I imaging you will heal/recover well.

@krystennicole6446

4 жыл бұрын

Owen, are the orgasms like normal ones?

@punamkk8794

3 жыл бұрын

@@ahmedhusseinny hi can u speak hindi then pls give ur phone no. Pls can I talk with you

are you still numb and do self catheter hurt?

@Pugsrus

6 жыл бұрын

MintoSnake I do changed my life

@MegaPianogenius

6 жыл бұрын

MintoSnake self catheter doesn't hurt but choose easicath one use

@ahmedhusseinny

6 жыл бұрын

I self cathed, got very very painful UTIs and something called false channel with very heavy bleedings. Very scary. Luckily I recovered. Now I am normal, no cath required. I have 200 caths with me, if anyone is interested, please PM me. It is free for anyone who wants it.

@beenawaqar

6 ай бұрын

It doesn't hurt because of loss of sensation

had surgery last year, almost 11 months, still have numbness, and it's affects my bowel , bladder, and sexually dysfunction, Dr told me my nerves not cut it's damage, and I'll be remain like this maybe rest my life and maybe if i getting better it's going to be 20% anyone had this and recovered ? and how long it take? i'm feeling so depress and can't believe to end up with this

@IgobyOwen

7 жыл бұрын

mohanad aloubaidi I would try to prove my doctor wrong. my doctor said something similar.. all recovery within 14 months. here I am 7 years later and there's more recovery that I have been experiencing lately. especially when it comes to my bowel and bladder function. don't lose hope!

@tubbsthebigcat

7 жыл бұрын

mohanad aloubaidi is there a way I can contact you? I'm in a similar situation and would like to talk because I'm so depressed

@tubbsthebigcat

7 жыл бұрын

Owen Layugan can I email u? I'm in a similar case but misdiagnosed for an entire year. I'm so young and afraid ......

@IgobyOwen

7 жыл бұрын

Tubbs The big cat feel free to send me a private message and I'll give u my email. hang in there you will get through this

@alishkov1991

6 жыл бұрын

mohanad aloubaidi I just had surgery yesterday. I will asses any damage that had been done through out the following month. Doctor advised me to dose up on vitamin B12 to make healing of nerves faster. And calcium plus vitamin d to accelerate absorption.

i have CES from Gunshot wound to my right abdomen the ripped "Shredded" thru my colon and crushed and lodged in my l2 vertibrate .

@IgobyOwen

7 жыл бұрын

Gianno Warfield I'm sorry to hear about this. How is your recovery coming through?

@giannowarfield5731

7 жыл бұрын

Owen Layugan Pain every second no days off but i must say if change your diet to alkaline rich diet u feel much better health living is the key to recovery no junk food no meat no dairy and drink alot of water i know its hard but you have to do it for you're self and no meds it really makes it worse trust me only herbs and nature chemicals wont and dont work. change your ways and you will be alright for real i change my diet and ive never felt better i was 290 now im 220 and losing more and i suggest fasting for optimal regeneration of nerve's trust me . I defied the odds you can too. And i have the worst case scenario of Cauda Equina Syndrome That being Ballistic Trauma. Peace Go with you brother.😁

@IgobyOwen

7 жыл бұрын

Gianno Warfield thank you for your insight and sharing your experience as well. I've actually transitioned from a pāleo type of diet to ketogenic. I have been for the last 2 years. No grains lots of vegetables but also quality fats; high fat, moderate protein, and low carb. My blood works have come in great. Cholesterol, blood sugar and all have become normal. No longer pre-diabetic or hypoglycemic. I am usual in a state of fast because my energy comes from my own body fat so I am not hungry often. I've seen a rapid improvement since I started. I regained more feeling to my saddle region, on top of being able to maintain my weight, losing fat and retaining and gaining muscle to help with back support. I am no longer skinny fat. Lol. It's also more manageable for me since I'm not constantly eating or looking for food. If the alkaline diet works for you, keep on. I am of a mentality that our bodies know how to repair itself as long as it is given the proper nutrients. I wish you the best in recovery! Share us your progress!

@giannowarfield5731

7 жыл бұрын

Owen Layugan . Thank you. Your doing Great as well. 😁💪👍👍✊✌

dependent on ibuprofen?

@IgobyOwen

7 жыл бұрын

tim meadows not at all. as soon as I finished all my medications I think in 6 months I didn't go back to any at all. no ibuprofen no med whatsoever. I also changed my diet and I exercised.

@jizzle779

7 жыл бұрын

that's good to hear man! As far as I know you can't become addicted to ibuprofen... it will eat your liver up over time though so it's best not to take it if that's something you can avoid. Thanks for sharing your story, your perspective on ces is inspirational

There should be cards 🃏 given with the red flag signs ,I've had it three times in 6 months!!! I have to self catheterization every day 5 times,Take pregablin and diazepam now my lifes ruined I loved travelling that's a no go now ,WE NEED MORE AWARENESS

@ahmedhusseinny

6 жыл бұрын

Read my story in posted somewhere above. Hang in there and don't despair. You will get better. Will yourself to pee by drinking lots of water and taking really cold showers. That really worked for me and others. I self cathed for 5-6 months before becoming I would say fully normal.

I feel like the surgery messes it up even more

@IgobyOwen

5 жыл бұрын

The experience is different for everyone. Some people don't have the best outcome with surgery but for myself it solved my problems. I no longer have back pain and it's been 7 years post surgery. I honestly cant remember a time when I didn't have back pain before the surgery. I hope you find a way to rid yourself of the pain.

@rocc6596

5 жыл бұрын

@@IgobyOwen thanks, im 21 and i can't remember the time when the numbness started, it was in the buttocks area, i never really thought of it til now which got a little worse. I don't have any incontinence, I do get pain here and there, but mostly the numbness in the saddle area, and hot sensation that comes and goes. and numb tingly feeling in my feet, and a bit of weakness in the legs. Honestly it isn't horrible it just gets annoying, idk if i should get an MRI check up or not. Idk what's really causing the problem, hopefully not some sort of tumor.....though i do remember throwing my back from doing some burpies a while back but idk how i did that.

@rocc6596

5 жыл бұрын

@@IgobyOwen what type of doctor do you recommend for this though?

@IgobyOwen

5 жыл бұрын

@@rocc6596 unfortunately because I'm not a doctor I can't tell you what you do or don't have. I would say talk with your doctor/general practitioner and tell them what is going on. My doctor didn't realize my issue until 8 years later when I ended up in the ER. That's when I had a neurologist diagnose me with my condition.

@DrDr-pg5br

5 жыл бұрын

@@rocc6596 please get checked by your primary dr first. They will test and refer from there.