Chronic Cauda Equina Syndrome: What you need to know- Dr. James Wymer , MD neuromuscular specialist
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- Опубликовано: 6 сен 2024
- Chronic cauda equina syndrome (Ch-CES) is a complex disease with multiple symptoms. It is currently defined as an individual diagnosed with cauda equina syndrome that experiences symptoms for six months or greater. There is very limited research on this topic, this is what we currently know. Keep following this channel for updates on Ch-CES.
We are currently researching this Ch-CES- to learn more about our research and how to enroll in our study, visit our website at CESLife.org.
Cauda Equina Foundation serves to improve the quality of life and care for individuals living with cauda equina syndrome and associated disorders. This channel serves that mission by meeting our educational goals.
From time to time the Foundation may update or remove videos to reflect the Foundation's Medical Advisory, Scientific, & Review Board's latest research findings in order to provide the highest quality and latest educational materials available on CES.
Cauda Equina Syndrome is a complex medical condition. This presentation is for educational purposes and provides only a general overview of Cauda Equina Syndrome and has been designed to be simple and accessible. Accordingly, this presentation may omit terms or concepts relevant to specific circumstances and does not constitute professional medical advice. Use of, and access to, this presentation or any of the links or resources contained herein do not create a doctor-patient relationship between you and Cauda Equina Foundation, Inc.
Please do not act or refrain from acting based on anything in this presentation 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.
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.
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!!
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
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!
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
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 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
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?
CES Life
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’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 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.