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Cauda Equina Syndrome: Pain, symptoms, management and prognosis
I can't seem to find a group for cauda equine syndrome so I chose chronic pain. So if there are People on here with CES please respond. My name is Skip, had back surgery and had a blood clot after surgery. It compressed the nerves at the nerve root, have most of the normal problems. Bad back pain, numbness down my legs, pins and needles in my feet, have to use a cane or wheelchair, loss of bladder function, terrible rectal nerve pain, I could go on, but if you have CES you no what I mean. Have had this for about 8 months now and I would like to hear from anyone who has had treatment for CES. My pain Dr. has no clue what to do. Just on pain meds now and would like to know if spinal injections would help. This stuff is really bad, Lyrica doesn't seem to help, Morphine and Oxycodone help but in no way takes the pain away. I really hate the mornings when the meds have wore off a bit and I have to get out of bed, sometimes I take a pain pill and give it a half hour or so then get up. The pain just continues to worsen and I'm concerned about the future. My Surgeon just stuck his head in the sand, wouldn't even discuss my diagnosis with me just wrote it down so I could Google it. He has virtually told me nothing. Will never go back to him. See a new Surgeon in a couple of weeks. Would love to hear your stories.
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Do you think that a neurosurgeon is required for pudendal problem? I am presently working with an anesthesiologist.
An anesthesia pain doc is a good place to begin and if that doc isn’t successful in controlling your symptoms ask about a neuro referral.
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1 ReactionPretty well got the pain controlled it's the incontinence that is not being controlled and is a big problem. Thanks for the reply.
Experiencing some pain, but the main thing is the problem of incontinence. Not considering surgery at this time. Thanks for your input on this condition.
Depending on where you live maybe a university teaching hospital and the bigger the better. You want to have the best poking around inside your spine.
willing to travel!
@jwm61 Are you considering a place like Mayo or Cleveland Clinic? There will be a wait time to get in if you have insurance that they accept. I am a Mayo spine surgery patient and the care there is excellent.
Here is Mayo's insurance and billing information.
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
If you wanted to apply at any Mayo Campus, here is a link to get started.
http://mayocl.in/1mtmR63
There are also smaller hospitals under the Mayo Clinic Health System and you may find a neurosurgeon at the Mankato, MN hospital. These hospitals have access to send patients to Mayo for testing, etc, while providing surgery at their local hospital. The wait time may not be as long as for Mayo Clinic. I do know Dr. Murphy at Mankato because she was a resident neurosurgeon when I was at Mayo Clinic for spine surgery and she helped with my discharge.
https://www.mayoclinichealthsystem.org/locations/mankato
https://www.mayoclinichealthsystem.org/locations/mankato/services-and-treatments/neurosurgery
Jennifer
Hello,
I have Cauda Equina Syndrome which is getting worse everyday. I was operated on over 3.5 years ago which made everything worse. I have a lot of other issues and on both immunosuppressants and nerve pain medications. Just asking if anyone is in the same boat and has any useful advice
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1 ReactionHello @tbo, you mentioned wanting to know if anyone was in the same boat as you with cauda equina syndrome. I moved your discussion and combined it with an existing discussion titled, "Cauda Equina Syndrome: Pain, symptoms, management and prognosis" - https://connect.mayoclinic.org/discussion/cauda-equina/.
I did this so you could meet members @jwm61 and others that recently discussed this difficult diagnosis.
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2 ReactionsThank you