Cauda equina syndrome (CES)

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

Hello @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.

It seems strange to me that doctors have no idea what to do. They should be familiar with what action or recommendations to make for CES. I'm sure they recognize that your surgeon should be taking action. From my experience, it seems like doctors generally work together and stick up for one another. It may be that the doctors aren't wanting to treat you because they don't want a lawsuit on their hands that should belong to someone else. I really don't know but it seems like they are really giving you the runaround.

I have the classic symptoms. Nerogenic bladder and bowel. Constant burning in the saddle area concentrated in the anus sphter muscle. I'm on Lyrica. I've tried many treatments. Nothing works.

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.

I have the classic symptoms. Nerogenic bladder and bowel. Constant burning in the saddle area concentrated in the anus sphter muscle. I'm on Lyrica. I've tried many treatments. Nothing works.

Hello @paladin121 -- I would like to add my welcome to Connect along with @lisalucier and other members. I also want to thank you for your service. I had not heard of caudia equina syndrome but used my favorite research tool - Google Scholar (https://scholar.google.com/) and found an abstract for an article that seems to support what you have said. Unfortunately it's just an abstract and you have to buy the full article. The following quote was from the abstract.

"Summary of Background Data. Cauda equina syndrome from lumbar disc herniation accounts for up to 1% of all disc herniations. Most of the literature supports surgery within 24 hours as a means of improving the outcome."

Medical Realities of Cauda Equina Syndrome Secondary to Lumbar Disc Herniation:
-- https://journals.lww.com/spinejournal/Abstract/2000/02010/Medical_Realities_of_Cauda_Equina_Syndrome.15.aspx

Keep asking questions and looking for answers. You are your best advocate.

@sandytoes14 sent me the following link which may have better information on cauda equina syndrome:
-- https://www.disabled-world.com/disability/types/spinal/backpain/ces.php

John

@dhuffman1969 idk if this would do anything but it kinda sounds like my symptoms of interstitial cystitis and i get installations for that which is lidocaine,sodium bicarbonate, and heparin and they put it in my bladder through a catheter and it has actually seemed to work after a few weeks

@skiprel1957

Totally get a new doc ! I went from 5mg Norco to 10mg within a year and from every 8 hours to every 4 hours now, I too wonder what maybe next.

Same here; I hate the mornings so I have my meds near me with water and I take a pill and give it a half hour then get up. {Some days I wonder why bother} Its not like I can do much physically anymore. Thank God for "Mother's lil helpers" 😉

Honestly think surgery would improve some but is it worth the risk of making it worse later? My dilemma. I still get cortisone injections and pt these help some as well.

Keep posting ~ God Bless You man.

@rockinrene65 lumbar surgery was GREAT. I totally recommend it! The doctors waited years too long and my Cauda Equina was permanently damaged by the time I found a great Ortho surgeon. He told me he needed to do surgery NOW and I agreed. What's left if you don't? possibly the loss of your lower limbs and incontinence. I am SO glad I did it. The nerve roots didn't entirely heal because the neurosurgeon neglected surgery but I got rid of the pain and got a lot of feeling back. The deterioration stopped. I recommend you keep searching. I have always taken opioid for the pain associated with degeneration but, but the tylenol in the Oxy helps as much as the opioid. I'm very stable on my 10/325 every 4 -8 hours for 25 years. I am 69.