It's sad that there is so liltle awareness on CES.. Thank you ❤️

I have cauda equina syndrome its changed my life so much i was diagnosed when i was 26 im now 31 suffer with my mobility bladder bowels nerve pain extreme spinal pain it affects my mental health

@cynthiamead3215

2 жыл бұрын

I'm sorry to hear what u are going through, I have been living with CES for 20 yrs I was diagnosed at 28 only after being misdiagnosed first, I have never found a support group. It has been a pretty horrible situation and mentally devastating. I just wanted to say ur not alone

@grancanyon2878

2 жыл бұрын

It affected my mental health too, how could it not, such a life changing thing that it seems NO ONE is talking about!! I hope things will start looking up for you Tanya.

@grancanyon2878

2 жыл бұрын

@@cynthiamead3215 Cynthia, its mad isn't it..theres barely information on the net about it, never mind support groups. Very very isolating..you're not alone either lovey, wishing you the best.

@varghesetv3070

Жыл бұрын

Ialsohavthissyndromeaphisiodoctorkillme

I got diagnosed with CES about 6 months ago, and I'm going in for my wheelchair assessment at the end of this month. In a few days, I'm finally meeting with the Spinal Injury Clinic for neurogenic bladder and bowel incontinence. It completely changed my life. I can walk a short distance, but it's very painful. They had to remove all of my disc tissue between the L4-L5, so it's just bone rubbing on bone, now. That wasn't even everything they removed, it was a microdiscectomy and a laminectomy. They removed a chunk of the bone and cartilage, too. The herniation was massive. They said a fusion is inevitable. I'm starting to really accept that this is my life, now. It's very frustrating. I went to the hospital 6 weeks before my diagnosis with the same symptoms, and they didn't even test me. By the time they took it seriously, I had bladder retention. This is in the States, by the way.

Hello all .. thank you for sharing this info I was lately diagnosed.. got operated after 120hrs of urine and bowel retention. I was operated on June 26th 2022 , after surgery i definitely got rid of that hell of pain.. but didn't get my bowel and urine up and running.. It's been 1 and half months now .. Everyday With urine cathedral on front Suppository inserted in back daily ( for bowel discharge) I don't know how much time it's going to take for me to recover.. But all your stories made me feel that I am not alone 🐱 It's 2Am now.. got to know the name of my problem today .. So I started searching in this KZread and got this channel .. Thank you guys for sharing your experiences.. Wish you all recover soon..❤️

@Preeti-lw9jc

3 ай бұрын

How are you now hope you're doing well ❤️‍🩹 . I really hope you would have regained your bowel and bladder function now

@NandaKishorepav

3 ай бұрын

@@Preeti-lw9jc not to 100% but upto 50% I still have to try harder to urinate, my bowel movement is recovering but numbness throughout seat area is not going off.. I guess it's permanent. But thanks to God for making me recover to this extent.

Thank you for your lovely comments - visit the website and join our online Facebook group - under support groups - and then it doesn’t matter where you live ♥️

I wish this was in the USA. Thank God for utube so we know that it is real and we are not alone.

@simplyhonest9113

4 жыл бұрын

I live in America, do you know of any US support groups? It would be nice to talk to others going through this.

@lisakoe8085

3 жыл бұрын

@@simplyhonest9113 I've had CES for 19 years. I'm in Tennessee & I've been a member of a couple support groups on Facebook. If you haven't already just type in Cauda Equina Syndrome Support Group & request to join. There are so many awesome people in the group! There are many members from around the world and all at different stages. Here's a link to the page: facebook.com/groups/34376446328/?ref=share Hope to see ya there! ❤

@cynthiamead3215

2 жыл бұрын

I am in the USA and I have had CES since 2002, I lost a lot and have very few people that are still round or care. I hope u are well

@Mindy56743

2 жыл бұрын

@@cynthiamead3215 I have lost all my friends and it is just down to Two of my children and my mom. Most people don’t understand how isolating life after it is

@cynthiamead3215

2 жыл бұрын

@@Mindy56743 I'm sorry to hear about ur loss, but unfortunately I understand and I would never wish CES on anyone. I have been living with CES for almost 20 yrs. I don't have any family left my mother was my best friend, and the only person that stuck around and helped with everything, raising my children, caring for me, and now that she and most of Mt family has passed on, I am alone. My children are grown now and hold alot of resentment towards me so they have chosen not to be in my life. So I do understand. I am here If u need an ear let me know.

What bugs me ...people don't understand it including family and friends. They expect you to walk as all in your head. Even though you show your xray reports, ambulanced 4 times , admitted for a total of 2 months ,and reports from urologists and surgeons. 4.5 years bedridden with motorized chair. Taken 7 years to walk 30 feet . Even my mother gets pissed if you can see the tube for uniary bag. I moved 6500 km away where nobody knows me as fedup. I take care of myself as tired of nurses ruling my life . Had so many nurses in my home fighting who gets more hours. I learned to do all myself and got rid of everyone. Nobody knows my condition and not judged. Finally some kind of normal life. Still cannot work as this is for life. I hope not to land bedridden again as take precautions of my limits

@Smokillo

2 жыл бұрын

That’s quite brave of you. Stay strong.

Thank you . I’ve been alone for 10 years thank you for explaining it to me x bb

@caudaequinachampionscharit2694

4 жыл бұрын

brian byrne Hi Brian we are so pleased - have you visited our website ? We also have a Facebook support group - you can join from the site www.ihavecaudaequina.com

Sinds 2001 after a fall with spinal fracture - I have lived with CES. Using a catheter is no problem providing I don't wait too long but retentie of the intestines remains a terrible problem. Pain I have learnt to live with and help of medication I get through the day. in the early years I had a lot of psychological issues finding it difficult to accept from being a very active person to someone who had become over night an invalide. looking back it would have been very helpful if there had been more understanding for this condition - more people to talk to. I felt very alone. Gradually over the last 23 years obviously acceptance has found a place. I do hope since then there is now more knowledge and research to help all those suffering, New sufferers : it does get gradually better believe me.

I had siatica for over 10 years I would not go to GP as they made me feel there was nothing wrong as kept saying it's just a bad back, I worked evan though I was in agony day and night, then pain management sent me for a MRI and was I tears with the pain when I had the scan, I had an appointment come through for the results of the MRI I had to wait over 2 months to be seen so I kept phoning as was in so much pain, and I started to find it hard to pass urine, I was given an early appointment becouse I kept pushing, at my appointment they found out I had cauda equine syndrome so it was all panic then I had the op the next morning and came out with a catheter and numb left leg. I was so angry as you feel they don't believe the pain you are in and that you know yourself it is getting worse and there is nothing they will do but tell you its sciatica. Anyway a year after my op I am now back at work only doing part time as I get alot of numbness in my leg and alot of pack pain still. I wish the GPs would ensure they listen to patients and how they are feeling and trust us when we know or own body's and we tell them something is not right.

Well done to all of you. Was lovely to meet u all at tamside xxx

I live in America. There is absolutley no awareness of this in our country. In the last 2.5 years I have gone from a suprisingly young healthy full of life go getter 52 year old man to an almost bed ridden shut in due to the slow onset of what I believe is, now at least, i complete quada equina syndrome. I have been to 15 Doctors including 2 Neursurgeos and was always told nothing was wrong with me. So I would go back home and my limitations got greater as the pain and now bowel bladder and sexual disfunction slowly became the only things I had left in my life. It has become a nightmare. And my entire family thinks Im crazy, save my hero of a husband and 1 beautiful strong sweet niece. But she lives 150 miles away and is starting her own little family. She is always there to talk tho. No one else EVER calls me anymore. My man has to work all the time. I simply can not. So, my emotiol state has taken quite the hit as well. Not only is my body and life shattered, but now so is my heart. However, If I can live with this with no pain meds at all for over a year, then if I keep going I k ow someone will listen and actually stop and look at the imaging I have taught myself to read ovet the last 2 years when the medical community, wich I USED to be a part of, gave me plenty of time to And forced me to learn that medical skill also😉. Now I am movi g foward with a diagnosis of lumbar lordosis, right sided scoliosis, as well as 2 lumbar and 1 thoracic toxic annular tears, 1 annular tear was missed on an mri from 5 years ago and still there and much bigger today. The other 2 were on more recent mris includingthe 2 neurosurgeons imagi g they ordered and assessed. I have a library of imaging that I can read now. I am taking this new info, along with some really bad new symptoms after yet ANOTHER back pull from doing nothing, to the doctor who was my entire familys doctor when I was young and he also gave birth to me. Im ready to be born again. Maybe a sign from God he just popped up out of nowhere? Im going to go see. When I beat this, I WILL be starti g a support group for these types of life and personality stealing nightmares. I will NEVER stop!!! Thank you for letting an isolated desperate soul know hes not completly alone. THANK YOU!!!!🙏🙏🙏🙏🙌🙌🙌

@chaysedaniels2439

3 ай бұрын

Where in the USA do you live? I have Cauda Equina 1 year 4 months now. I am 60 years with young adult children. I still am able to work full time, just travelled to the other side of the world, even with the pain, bowel and bladder troubles. I'd love to have someone to talk to who understands.

Well done but unfortunately nobody understands the pain. The affect on you personally as to who you were. The friends you thought were friends

Ankylosing spondylitis

I'm 3 months post op, my legs are virtually useless. I do worry if I will recover or is this as good as it is going to get.

@grancanyon2878

2 жыл бұрын

How you doing now buddy..hope you've got some mobility back..they say up to 3 yrs there can be improvements. I hope you see those as time goes on.

@redsetteragain7112

2 жыл бұрын

@@grancanyon2878 Hiya, thanks for reply, it's really good of you. I have to say I think I'm one of the lucky ones. Other than having very weak lower legs I can move around reasonably well. I cannot climb a single step without a handrail but I am great full for just being mobile. I listen to others and realise just how lucky I have been. Many thanks for caring 👍👍

@grancanyon2878

2 жыл бұрын

@@redsetteragain7112 I'm so happy to hear you've gotten some "use" back..its one of the craziest flippin conditions I never heard of..have any of us..until it happened to us? No information out there, very little support..I wish you continued improvement over time ..I was lucky too when I see what others have had to face..still boggles my mind regardless. Take care Redsetter.

@joannewittenbrook8051

9 ай бұрын

Three months is still very soon. You can continue to improve for two years. It is terrible what some of these doctors do.

@apaeth2

2 ай бұрын

I continue to improve after almost five years it's just measured quarterly instead of daily. I'll never be the same but CE doesn't rule my life anymore. It took 2-3 years...

I am suffering cauda equina syndromes last six months difficult in walking and bowel bladder problem

@grancanyon2878

2 жыл бұрын

Amit, have some hope. There can be improvements over time.

@mrunstoppable5806

Жыл бұрын

How r u now?

@NandaKishorepav

Жыл бұрын

Hi amit .. how are you now ? I too am having same issue .. it's been 1.5 months since I got operated.. But suffering from urine and bowel retention.

@mrunstoppable5806

Жыл бұрын

@@NandaKishorepav same prblm operated 15 days ago but still having bowel retention and numbness in the saddle region and whole left leg

@alkalineforlife9033

Жыл бұрын

So what u got after surgery

I just found out I have it. I'm scared as hell

So horrible to live with 😔

@Mindy56743

4 жыл бұрын

Jennifer Neufeld I cant stand to ride for a hour. The thought of 6 makes me ill. I can only imagine how bad you feel with that kind of ride.

A good chiropractor can easily solve these issues. Look for a Gonstead Chiropractor or any precise chiropractors.

@user-cw7su8ro1h

Жыл бұрын

I saw a chiropractor and less than 24 hours later I needed emergency surgery for Cauda Equina. That was November 2022. If a chiropractor could have foreseen these symptoms, these past several painful months wouldn't have happened.

@Mark-fg9pf

8 ай бұрын

Wrong

@buzzzzzz69

8 ай бұрын

This is potentially dangerous advice... Chiropractors don't have the training or the knowledge to be messing around with something as serious as this.

@user-cz6gk2ci4k

4 ай бұрын

No human on the face of this earth can reverse damaged spinal cords or brains. It's for life.

@utubesux1

4 ай бұрын

You have no idea what you are talking about and your going to get people hurt. Signed a man who did what you stated to do. I went to one and was told my referral got canceled due to confirmed ces.