Cauda Equina Foundation's Warrior Channel
Cauda Equina Foundation's Warrior Channel
Cauda Equina Syndrome (CES) is a complex medical condition. This channel is for educational purposes provide only a general overview of CES and has been designed to be simple and accessible. Accordingly, this channel may omit terms or concepts relevant to an individual's circumstances and does not constitute professional medical advice. Use of, and access to, this channel or any of the links or resources contained herein do not create a doctor-patient relationship between you and the Foundation.
Please do not act or refrain from acting based on anything in this channel without first seeking medical advice from your healthcare providers. Only your licensed healthcare providers can provide assurances that the information contained herein, and your interpretation of it, is appropriate to your particular situation.
Cauda Equina Foundation, Inc., is not responsible for any harm that results from the reliance on any information contained in this presentation.
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My experience of CES has been horrific after falling down my stairs, rushing around after my dog. Nobody recommended an X-ray or MRI. I feel sure, in my mind that I fractured my spine, as I was heavily bruised on one side of my back. That was in November 2022, (discovered after seeing my medical documents). All the signs were there but nobody picked it up, or didn’t want to because of costs! An ambulance was called on 10 March 2024, not for me but for my husband who had palpitations but I was in agony and asked the paramedic for pain relief. He asked me to explain my symptoms and immediately he replied with you have Cauda Equina. I did not have a clue what he was talking about and he then explained. However, I thought he was wrong as my doctor had examined me two days before saying she would have to go through the hospital for any scans because of costs. An emergency operation was performed 11 March 2024! I would not wish CES on anyone to experience, even the devil!
What type of surgery did you have, please.
Thank you - this is me but no doctor will talk to me about it,
what is the best type surgery for cauda equina? Could endoscopic surgery help with CES, please
10 years. Idiopathic. It has completely ruined my life. Agonizing neuropathic pain and weak motor functions. I can't sit, stand or walk. There is no hope for me, and I feel incredibly guilty that my 80 year old mother has to care for me. I should be taking care of her. Instead, I lay in bed in screaming neuropathic pain. It took my entire life from me. It's horrific.
Thank you so much for this video. This syndrome is so energy draining it just rakes the life out of me. My CES was the result of negligence by the surgeon fixing a disc on my lower back, what makes it worse is that I end up enduring the excruciating pain at home. Because of the symptoms it was easy to find that I had a bad case of CES due to the surgery. We confronted the surgeon about the symptoms and from the start he became very defensive stating that it would take some time but that all of my symptoms were going to go away. Every month he would say the same thing to give it more time and that all the symptoms are going to go away, well 12 years passed and I still have CES. Now we understand that he played us all that year because the one year statute of limitations. We definitely tried to get legal action but we were not able to get legal representation because it was already over a year and we were not able to get a lawyer with CES experience in San Diego CA. Now at 66 our dreams and goals for our retirement are gone the bastard ruined my life and the only reason that I'm still alive is because I'm going to see him pay for what he did I totally believe in KARMA and one of these days he is going to pay for what he did.
Hello, Ive struggled receiving adequate medical support and understanding from the med system as for appropriate treatment post surgery.
Thank you.
Thank you so much for this
Caused by surgery? 😢
I had a laminectopy and fusion of L4-5 fusion, I now have cauda equina what do I need to do?
Have you gotten any answers to this yet outside of here? I had decompression and fusion of L4-S1 and have been fighting this for the last month. My surgeon has not said it said it is CES, but from the way he acts around me I think he knows. Trying to find info on iatrogenic cauda equina solutions doesn't seem easy.
What an excellent CES video resource for anyone living with this condition. I am incomplete CES, its been 6 years as of 30 December 2023. What a journey it has been, I am thankful that around year 4 of my recovery I started to get bladder and bowel function back, still a long way to go but thankful for what I have recovered. Your tips on Energy Conservation are spot on, pretty much how my everyday life goes and I loved to see that being active is a priority as I feel from my own experience the key to really living well with CES is to as long as you are able stay active, do your mobility training but also to focus on mental strength training and never forget cognitive function training as the symptoms especially the constant nerve pain and signaling problems wreck havoc on your mental capacity and function. The most gains and recovery for me came from sheer will power and mental strength. Your mind and your attitude is the most powerful tool you have for living with CES and aiding recovery. However 6 years down the line fatigue both physical and mental is still a major factor, everything you do comes at a cost as so cleverly pointed out in this video. To all you CES worries out there, you are amazing and doing the best you can, never give up and just know that what you are able to endure each day and still be able to smile makes you an exceptional human being. For every negative experience, feeling or emotion you have, rest assured you gain 10x that back in inner strength and courage, in new learned abilities, and often leads to new experiences and opportunities in life. Where you loose in one place you do gain in others, and its in those others areas that you are getting high rewards that most other people will never get or experience. I remind myself each day that from this one negative experience I gain far more positives from it.
I am in a similar boat. They sliced my spinal chord. I have to catheterize as well. And i lost control of bowels as well. I have numbness in the sadle area too with back pain. I spent 3 months trying to sit up and then learning to walk again in a rehabilitation hospital. I was in so much pain i was in the recovery room for 3 hours before they got me a room and i ordered the doctor to give the meds that i was allergic to, gabapentin. It worked in a small dose. 13 months later, i am a month without a bowel incident. I am down to 2 catheters a day now. I still have a weak left leg and now walk with a heck of a wobble, and i have fallen quite a few times as well. Which in turn, has ruined my right elbow due to landing on it several times. I can't feel my sphincter and would go without even feeling it... I am done with doctors, and i have quit listening to them and became a carnivore and fasting, and now almost all of my inflammation is gone. Felling better, and there is hope at the end of the tunnel. Stay positive and stay the course. Good luck! Oh, i am all pain meds now!!
Unfortunately in ireland you can get mri report to hospital with Dr's letter then be told you are not an emergency be sent home to wait till you become an emergency ie. Total incontinence or leg paralyses.
I am senior in US no dr will ralk about it even with MRI.
Hi I have severe hernia disk nuns leg hand. Pinched nerve scoliosis spine don't feel wen I go pee feel nuns. I Shude to emergency thank you for your help I love your video
10 year chronic, ruptured L5-S1 Twice! Delayed diagnosis for one month. 54 yr female, no health issues, all current symptoms acute, on duloxetine 60mg daily
Hi, I am a radiologist but ironically I suffer from symptoms of chronic CES. No one till now has reached the diagnosis. I had an acute disc prolapse back in 2005 but when I did an MRI and showed it to my consultant ( I was a little ST1), he didn’t take it seriously. I have been suffering ever since from intermittent sciatica, but my lower back never got better. Could you please inform me what sort of surgery did you have and did you have saddle sensory change ( I never call it anaesthesia because it is not anaesthesia and as doctors we vaguely saying things to people that we don’t understand ourselves ). I would appreciate your answer.
I’ve had it for 2 weeks now
How are you now??
@@Preeti-lw9jc same
@@PrettiPetty24 then did you had surgery
@@Preeti-lw9jc it went away but my hands are numb now dont think it was CES
@@PrettiPetty24 and did you had any problem with bowel or bladder, saddle anaesthesia
I've had 3 back 1 neck surgery help!!! I'm walking but it gets hard💔
2 back surgery and this is my 7th month of hospital and walk isn't possible without walker a and orthosis
Don't give up right now I'm falling and something is pinching in my hip I must use my walker or my cane. Everyday try and walk without it even if it's 2 steps okay and everyday add a step I had to learn to walk and shower bathroom stairs everything over you can do this it's still hard I'm slow but moving
Thank you!!!!!!!
In 2015 I had a spinal fusion surgery at my L4 L5 and my neurosurgeon accidentally scraped a hole in my Dura removing scar tissue from a prior surgery I had....a Synovial cyst removal also at my L4 L5. I also had to have multiple blood patch surgeries trying to stop a massive spinal fluid leak. I was finally released from the hospital after almost a month in there. I currently have Adhesive Arachnoiditis and my neurosurgeon characterized this as Arachnoiditis of my Cauda Equina for my disability claim which I won. I lost my ability to urinate on my own and have to catheterize myself, and from my waist down I've lost so much of my coordination to walk, and I have double sciatica that I spent years trying to find relief from. Finally my neurosurgeon said surgically there's no fix for this, and taking my fusion hardware out wasn't an option (I've been suspicious of this since my fusion surgery) I was a serious marathon runner and triathlete before all this, now I can barely walk around the block. I spent a couple of years trying to simply walk outside, but I never developed any strength in my legs which seemed odd, but I guess nerve damage causes this. It was embarrassing sometimes when I attempted to walk, as I looked like I was highly intoxicated, and at times I was concerned of being stopped for public detox. My neurosurgeon says I have CES, but with my research I'm not sure myself, or if it even matters at this point (it's been 8 years now since my fusion surgery which started all this) If you read this, is there a benefit finding out if I truly have CES, or does my Adhesive Arachnoiditis kind of override any issues CES may cause? Sorry if this is somewhat confusing....I have trouble articulating thoughts sometimes Thanks for all you do helping people, Tim
I am in tears watching the limitations of energy conservation and the cost of energy conservation because those two sections are exactly my day-to-day. It was like you were reading my own script.
I dont really know if i had cuada equina or not one day i woke up and my private part is numb but i can pass the urine but abit harder then normal but after a week its got less numb and i pass urine alot better
How are you now??did you had surgery?? Do you have any disc problem
CES Life
Can u have cauda equina with adhesive arachnoiditis
Thank you so much for this. So useful so someone who's suffering from this. I'm so grateful for you as someone who has insurance that doesn't cover any therapy. You're amazing and thank you for making these slides and uploading them. When you pay it forward as you are, good things will come back to you. Thank you Thank you Thank you.
Without sergery doing physiotherapy cure cauda equina?
Nop
No
You explained so much.
Thank you! Glad it helped!
I can't feel my legs moving like a constant heartbeat, the list of complications is ways pass all that you have describe as symptoms and difficulties
Hi Craig, Thanks for your comment. We use evidence based medicine when we make our educational videos. We recognize the lack of full understanding of Chronic CES in scientific literature as studies on the subject are rare and lack understanding of the disease. That is why we are currently enrolling patients with Chronic CES into our Natural History Study- it is a research study to gather scientific data on the full scope of Chronic CES. We can then use this data to better inform patients and the scientific community about Chronic CES as a disease. You can read more about our research here: www.ceslife.org/natural-history-study.html Hope this helps! Cauda Equina Foundation, Inc.
I have been battling with cauda equina syndrome and it is about to kill the nerves in my limbs can you please help, 23 year of pain and discomfort please help please 😭😭💔💔💔💔
Get surgery what the hell... that's what fixed it for me 6 years of pain gone
@@j.alvare.z8902 23 years of Hell medical slavery welcome to Britain 🇬🇧 😭💔🇯🇲💔⚖️
Craig, You can message our team directly at CESLife.org through the "contact us" form. Please be sure to be specific about the type of help you are looking for as well as your general location so we can better assist you. Give us details so we can understand what is going on, but try to keep it brief and specific so we can assist you as quickly as possible. We also have a hotline for those in the US- 407-984-6394. For those outside of the US- we can set up a video chat after we receive a contact form submission if necessary. We're here to help. For immediate CES concerns contact your primary care provider or if you think you have Acute cauda equina syndrome or other emergency- seek emergency evaluation or dial emergency services where you live, 9-1-1 in the US, 9-9-9 in the UK. Here is a link to emergency numbers internationally- travel.state.gov/content/dam/students-abroad/pdfs/911_ABROAD.pdf Hope this helps- reach out to us. Cauda Equina Foundation, Inc.
@@craigfowler8297hi Craig I'm also in the uk and think l ma0y have this, how are you now?
Have you ever had any one with this Condition that PT and other things couldn’t help? I’m currently in PT and they specialize in Pelvic Floor. She wants to do vaginal exam because she said it’s definitely internal too. Honey, I’m losing hope., this pain is the worse I’ve ever experienced. I don’t want to do physical therapy if I’ll still be in all of this pain. Help me. Help me. ❤
DaVannis, Amanda here. I had pelvic floor PT and it absolutely helped me be able to sit longer. She also gave me tools to use at home to be able to manage symptoms on my own and to continue therapy once therapy was over. The symptom management has absolutely saved my sanity and suffering many times. It was primarily internal muscles that were affected in my case and that was what causes the majority of my pain. My muscles were so spastic that they would hardly move at first and so therapy was slow going for a while, but it did help. At first, I thought it was making the spasms and pain worse- because the muscles weren't used to being manipulated or moved. She told me that may happen- and it did. She said its like all other physical therapy where it hurts more in the beginning because the body isn't used to the movements and that like starting any new exercise, it can cause pain and soreness- spoiler alert- it did. BUT, it DID get better after about two weeks of therapy three times a week for an hour. Then the magic started to happen where the muscles actually started relaxing instead of tensing up even more after therapy. Then I started noticing a significant difference in my ability to sit. While I still can't sit on hard surfaces, I can sit for about 30-60 minutes at a time. The other thing we figured out through pelvic PT was that my SI joints (sacroiliac) were unstable and moving too much and were arthritic, that was another source of pain for me. That required an SI join fusion after failed PT to stabilize the joint. BUT- I CAN SIT! For me the pain was so bad at times before that even laying down it would hurt like crazy. Now, I have pain in the pelvic and sacral area while laying down on occasion but its not as bad and doesn't last as long. My urinary incontinence also improved, I still leak on occasion, but its usually when I laugh, cough, get up, or do something more strenuous- and its not a lot like it was as far as amount. I still have retention- but I can manage that better now too. I highly encourage everyone with pelvic pain, pain while sitting, and urinary/bowel or sexual dysfunction as a result of CES to consider it and if they do participate in it to hang in there because it will get better- don't forget to do your home exercises as well. I hope this helps! Be sure to visit our Discord channel to join our group discussions on CES to get more perspectives on pelvic PT and other challenges that arise from living with CES. CESLife.org -Amanda Cauda Equina Foundation, Inc.
I need help. Have claudia equina. Must find treatmrnt
I cant get surgery that will make me paralyzed or death or more pain
I had surgery for cauda equina, did not get paralyzed. Hope you will get your treatment soon.
Deb, You can contact us directly on our Contact Us form through CESLife.org. Please provide your general location, a brief history of what you need help with, and any other information that will aid us in assisting you faster. Cauda Equina Foundation, Inc.
Alkaline, We're sorry to hear that. You are not alone, not everyone is a candidate for surgery. Nonetheless, there are treatments out there to help manage your symptoms and possibly improve some function. Be sure to go to our website to learn more- CESLife.org Cauda Equina Foundation, Inc.
Lodi, Surgery is one of the most common emergency treatments for CES. How are you doing now? We hope you are doing as well as can be! Cauda Equina Foundation, Inc.
I nee
Deb, I think you are asking for help? You can directly reach us through our contact form at CESLife.org. Be sure to be specific on what type of help you are looking for and your general location. A short summery of your background into the situation you are needing help in is also helpful for us to better assist you. Cauda Equina Foundation, Inc.
My father suffered from CES since Sept 2019 and had been undergone surgery. His present complaint is hypoaesthesia, on foot, calves, back thighs, and bottocks. Is there any physiotherapy modality or any kind of treatment to improve his sensoric problem? Thank you in advance
Mwoya, I'd like to refer you to this Blog post about being newly diagnosed and in particular the part about "kicking a box of rice". www.ceslife.org/cesblog/welcome-to-cauda-equina-syndrome-what-you-need-to-know-now That said- nerve injury recovery is weird. Some get sensation back, others do not, some recover some sensation, some develop new weird sensations- its a poorly understood subject but gaining traction in the scientific research community. I do know that my occupational therapist tried sensory recovery with a box of rice (see blog post). While it ended up not helping me, there are others that it has helped (which is why she tried it). So, there are methods to sensory recovery- most include stimulating the area with new sensations. The theory is neuroplasticity- where the nerves find new pathways for conducting the signals previously damaged through internal and external stimulation. Here is some more information on the subject: www.ncbi.nlm.nih.gov/books/NBK557811/#:~:text=It%20is%20defined%20as%20the,traumatic%20brain%20injury%20(TBI). I hope this helps set your dad on a path to regaining some sensation, feel free to reach out to us directly through our contact form at CESLife.org. Cauda Equina Foundation, Inc.
What happened can anyone explain to me please🙏
I was diagnosed with cauda equina syndrome in 2012 and had emergency surgery, but was left with neurological damage to the cauda equina. The cauda equina is in the lower lumbar spine and sacrum and controls motor and sensory function from about the waist down. To learn more about the syndrome watch our other videos listed in our playlist. I was unable to walk without significant assistance and someone literally holding me up. This bike is called a functional electrical stimulation bike and it helps to recruit and strengthen muscles to aid in my progress to being able to stand on my own again. I was able to take my first steps unassisted in 2015. It felt great! I will post more videos of my journey when I get the chance. Thanks for your question!
Hope you get better. I had cauda equina that affect my right leg. Balancing on it its still hard anf my calf i around 5cm smaller. Its almost been 2 years since my surgery and can only push around 50kg on that leg as a calf rize. Hoping you and me both get better a d good luck on your jurney
@@CESLifeHello. Thanks for explaining. I am currently dealing with this and I need to find a good doctor that knows how to properly diagnose and perform surgery. Is this your KZread channel that this video post is on??
@@CESLifeAlso, do you have your own website or social media accounts to follow. I would love to know more about your story. I feel like I am living with so much pain that I NO life at all. And the regular orthopedist I see in my nearby small town DO NOT have a clue!!!
I just found your actual website. I am glad to have this because I need this resource to help me on this journey. It’s been tough and getting worse each day. I hope to find some direction and information to help me see my way through. Bless you for building this foundation for others.