CAUDA EQUINA CHAMPIONS CHARITY
CAUDA EQUINA CHAMPIONS CHARITY
Welcome to the Cauda Equina Champions Charity You Tube channel.
Champions charity is the largest dedicated charity for people living with Cauda Equina syndrome in the world.
Our website www.championscharity.org.uk has lots of useful information to help you adapt to life with CES injuries.
With over 10 years experience supporting patients across the world, and the largest online support group you will be able to find answers to the many questions you will have following your CES diagnosis.
Teo overlong from the impact of CES can be a slow and frustrating process and we hope some of our community videos will inspire, inform and entertain you !
You can get in touch with us directly by emailing [email protected] as well as ringing our Helpline on the website
We wish you the best recovery and look forward to hearing from you .
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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.
This resonates on a whole different level. The words describe exactly how I feel post op. Here's to all the ces patients sufferering out there in silence. Better days are coming I hope this message finds you all well. Sending love ❤
Just want to say thank you for raising awareness. Im currently 2 months post op from ces and nobody can ever prepare you for what this syndrome entails. Without a doubt the hardest thing I've ever faced in my life. Thanks for pushing the knowledge and positive messages
I Wish He Was Here .. 😐🇳🇿
Wont share on Facebook
Glad to hear this talk.emergency surgery nearly five yes ago.I had cauda equine.outcome bladder bowel and all fine.had to learn to walk again rehab worked.but left with drop foot can't move toes numbness slight ankle swelling nerves haven't returned never missed one days exercise. Walk with limp on no tablets.Lucky not in wheelchair
It's sad that there is so liltle awareness on CES.. Thank you ❤️
10 years since onset for me. I have the extreme end as you've described here. You missed listing the extreme neuropathic pain in your intro. I have been bed bound and in agony for 10 years. This is not a life😢. Quality of Life??? There isn't one! I can't sit, stand or walk. I can't work or even go out for a cup of tea with a friend! Yes, I'm one of those who tried to kill herself..do you blame me?
I can only imagine the distress you must feel. I can relate to a limited degree. I have been diagnosed with CES and beginning the journey that will have many repercussions. I hope you know you are not alone in this difficult process of life altering health conditions. My prayers and thoughts go out to you. You need support and validation. Please call the US 24 hour National Suicide crisis line at 988 if you are experiencing suicidal feelings.
@michellestratford9753 I'm Ellie. I'm 7 years in on a long list of maladies. I know exactly what you are dealing with. I force myself to get up and around. I do physical therapy on my own and do as much as I can each day. Zero quality of life. Overdosed on meds several times. Tried self medicating with alcohol. I long for the lord to take me gently in my sleep. I'll pray for us both. Take care hun.
I just found out I have it. I'm scared as hell
I have cauda equina syndrome. Spinal stenosis, sciatica, disc degeneration, neuropathy, arthritis, etc.
How r u now
@@neelamr30 I'm getting a hip replacement
@@elizabethferrari1346 oh
It doesn't matter what you say because even when they have a chance to fix the problem before it progresses they just let you wait for the inevitable to happen you would be better off if you have cancer at least they make an effort then.
Everything you have listed here is absolutely *me
Being a doctor it is unbelievable that you are wearing mask but haven’t cover your nose . You are not protecting anyone and it is hard to understand what you are saying plus no protecting anyone . DOCTER
I wish you could bring those pictures forwarded or larger image .
😢
I also have CES and would love to share my story. It is 9years this month and has been drastically life changing and not for the better.
Very informative topic
A good chiropractor can easily solve these issues. Look for a Gonstead Chiropractor or any precise chiropractors.
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.
Wrong
This is potentially dangerous advice... Chiropractors don't have the training or the knowledge to be messing around with something as serious as this.
No human on the face of this earth can reverse damaged spinal cords or brains. It's for life.
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.
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!!!!🙏🙏🙏🙏🙌🙌🙌
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.
10:56 I had it twice last year, one surgery then 3 weeks later it happened again. It was thr worst time of my life! I was left after a positive mri scan, they failed to send me anywhere. 15 days later i had to call an ambulance as i became incontinent and numb, severe pain and couldn't feel my right foot. I have issues with S1/L5 as well as L4/L3/L2 and severe spinal stenosis. I'm 44 and now very limited in what i can do. I had only two physiotherapist appointments and thats it!
Did you sue them
@@aliceainscough1858 I am in the process now. It's extremely stressful 😕
Thanks a lot
Watching this makes me remember what I went through.. The pain having to roll off the couch to my knees to pull myself to my feet to not be able to take the pain and fall back on the couch.. I had my surgery within 18 hours I have permanent damage but I live a normal life.. Feb 26 2018..3 days and it's 5 years.. Thanks for making this video
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 just want to walk comfortably…. Cauda aqua.is frightening as heck.It terrifying me P any more.I don’t care about sex any more 🎉
@patjackson1775 I have it too. It all scares the hell out of me. Especially since no one understands
Had operation 1995 suffering with numbness in legs and buttocks
I am also suffering cauda equine syndromes my surgery done at 09/02/22 but my urine and stool sensation not coming
Worst red flag...going to A&E and being shoved in a bed and looked at by a junior Dr who will probably have no idea what's going on...rinse and repeat...
1st red flag will see you sent to a urologist who will miss diagnose you, if you're a male it will probably be a prostate infection, 2nd red flag you'll, get sent to the gastro who will do scans and find nothing...thats two years of your life wasted...3rd red flag...rinse and repeat the first two red flags numerous times, 4th red flag will be that nagging bad back...You may not have the numbness where they expect it or you might not even realise it...MRI and off to the orthopaedic specialist....5th red flag...physio rinse and repeat...6th red sexual problem...off to the sexual health clinic cos red flag one shows nothing...7th red flag ANTIBIOTICS for the non existent STD...rinse and repeat...
What does this awful song offer to CES suffers...
I am alone cos the NHS abandoned me they dont care that i leak pee they just want to physio me and throw me out the door with a pocket full of sweeties Medicated treaties So i don't complain anymore the revolving door...
The most horrible thing about CES is not being able to work...not getting any help with ATOS fit for work and being constantly turned down and spending years trying to appeal the decision and get it overturned...this is more hellish than trying to get treatment vis the NHS...you will not be awarded PIP and you will only get ESA with means you will be in the group that is labelled fit for work at some point, you will have to go to job clubs etc etc etc...humiliating and dehumanising to the point you dont want to carry on...
To get a discount for the gym you need a letter from your DR to say it's ok for you to use the gym otherwise the gym will not take you...
The waiting list for the NHNN Queens Square is currently eight months...
My 1st MRI scans showed herniated discs and the NHS said absolutely nothing about CES...after so many trips to various specialists via the NHS i was still clueless...it wasn't until i saw the same NHS specialist privately that i was informed i have CES symptoms and then and only then did the NHS take it "more" seriously...i was accused of trying to jump the NHS queue for treatment...twenty years later im still waiting for help...
Yes Kelly the shooting nerve pains to the pelvis are so confusing! i feel like someone is trying to bang a nail into the bottom of my spine...but you must go get it checked out! HA! Like just click your fingers and its checked out...by who exactly ? The physio who just doesn't seem interested or the specialist who just shrugs their shoulders...1st you have to contact your GP and argue with them about it, then you have to hope they will send you to the right specialist...thats if they dont send you for more scans...that will take a year on the NHS...takes eight months wait for my neurology appointments and they won't be interested as they think its for Ortho and not a neurological disease...
If you have CES symptoms the NHS will print out some pilates and that's about it, if you're lucky it won't be group therapy and you will be shoved out the door...100% my experience over three decades..i am frightened to do pilates as it makes things worse...
I had CES surgery six weeks ago im still on catheter and my bowels movements still not normal but walking around without any help left buttock still numb and anus area surgeon told me everything will be ok in 3 to 6 months let’s hope so
If only this understanding could be done alongside pain clinics
I can walk(even tho i have problems walking like the feeling of walking on marshmallows)...i can bend over and touch my toes no problem...Means nothing absolutely nothing...
This is the best one....I don't actually have CES...I have incomplete CES!!! AHAHAHAHAHAHAHAHAHAHA
So i've seen at least THREE neurologists at what i am told is the top neurology hospital in Europe...The national hospital for neurology and neurosurgery in Queens Square London for at least the last fifteen years...I can tell you if you have CES they will 100% not help/listen/talk to you like shit!!!...They won't have a clue...not a scooby do...They will give you vestibular tests and tell you it's migraine and throw nerve numbing antidepressants at you, even when you keep telling them they do nothing and please stop trying to give them to me as i've had enough and would rather die...Oh you'll need CBT for that...They will check your nerves and say they are fine...heres more meds...Discharged...go back to GP...wait another 8 months for a neurology appointment...do for scans...do some tests...thats another two years living in HELL wasted...cant find nothing...back to GP...GP gets frustrated, tells you they dunno what to do...your one of those with a chronic condition unfortunately and there not much we can do for people like you...but i will refer you to urology AGAIN for your suspected prostate pain!!!! Wait six moths for urology appointment...be told maybe it prostatitis have some antibiotics AGAIN!!! repeat for gastro/physio/etc etc etc!!!! 35 years of my life GONE!!!!
My 2nd neurologist...1st one lost my scans and it took me two years to get that sorted...says migraines!!! 2nd neurologist says migraines!!! So when i get upset says you need CBT and once we've dealt with your depression we can move on...bye...Off to pain management for CBT...CBT i can only describe as something like a benefits assessment...totally pointless and degrading af!!! Back to my 3rd neurologist...cant possibly be your spine and would be crazy to do surgery...have some new pain SSRI meds even tho the lost 10 did nothing...discharged!!! HELL!!!
Specialists...Please dont ever offer us CBT EVER!!! It's not what we want!!!! What we want is the respect we deserve!!!
I need CBT therapy cos i wanna drag my specialists over the table for being a self entitled prat!!!
Every day i wake up and think will today be the day i void myself so i can go to A&E!
How do i get help ?.
very proud, amazing achievement with so few resources, what an impact you've made
Hi doc I had an emergency surgery L5 S1 my badder stopped functioning before surgery after weeks I’m still on catheter n having problems in bowel movement saddle area still numb other than that don’t have any problems I’m 46 fit and healthy how long I’ll have to stay on catheter?
Thank you Doctor for this extremely important and valuable information.
Thank You for sharing, I appreciate it so much🌞