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Cauda equina syndrome (CES)

Chronic Pain | Last Active: May 9 9:50am | Replies (95)

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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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Replies to "I can't seem to find a group for cauda equine syndrome so I chose chronic pain...."

@skiprel1957
Same boat Skip, it sucks. I didn't make it to the toilet this morning, 2 steps away and bladder gave way, had 2 occasions of same thing with rectum. I had 3 level ALIF back fusion surgery over 2 1/2 years ago by an orthopedic surgeon, diagnosed with adhesive arachnoiditis almost a year ago. I have severe spinal canal stenoses and moderate to severe foraminal stenoses at several levels. I walk with a cane due to drop foot, but this morning could hardly walk. I am going to make an appointment with a neurosurgeon on Monday morning. I am due for another MRI. I am now on oxycodone 10 mg which helps the pain, also pregabalin, max dose 1200 mg/day plus methylprednisolone for 4mg on M,W,F. I have had chronic back since 20's,, we are about same age, me born in 54. Look up Arachnoiditis, you may have a toch of that too. From what I have researched they go hand in hand sometimes. Also look up Dr Tennant and Tennant Foundatio. Hang in there and continue this communication.
Dave