Cauda equina syndrome (CES)

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 moved to Florida from Kansas a bit over a year ago. i just have me. and i still have the ability to walk but i deal with all the rest of it. and it was my understanding that CES is a form of paralyzes

Hello, my name is Skip, 61 years old. Got CES from a hematoma after back surgery 8 months ago. I have been steadily getting worse with nerve pain since surgery. I have a long story but I won't get into it at this time. Don't want to bore you, smile. I haven't had CES as long as you but I'm also scared, and no how you feel. Seems like Doctors don't have a clue what to do and friends and family don't understand. I was on a catheter for 6 months. I had an enlarged prostate, due to that and the week bladder from CES, I had prostate surgery. Wasn't any fun but after surgery I was able to urinate on my own and got rid of the catheter. Thank God for that.
I still suffer from all the normal CES problems, balance, have to use a cane, walker of wheelchair depending on how far I have to go. Numbness and pain down my legs, pins and needles in my feet, severe back pain, Rectal nerve pain that is awful. Going to a new Surgeon Monday, I hope he will have some insight on CES. Please get back with me, together we may find some answers. ...Skip

I am 84. Less than a year ago I was walking, driving my car. In Feb I experienced severe pain, in May I had to use a wheelchair. Many tests, no treatment.
At my last visit to our Pain Clinic I was given the name of the book: THE WAY OUT, by Dr. Alan Gordon. Seems like that is the best they can do. Interestingly, it is a good book.

How do I get a diagnosis from Mayo Clinic.

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.

Has anyone experienced cauda equine surgery or symptoms.

I've had lumbar disc displacement at L4/5 since my 30 but didn't know I had it, by chance of requesting medical notes it was on my notes . I've had sciatica numb feet pain but was not really heard that is, when left hip went at 40yrs...now 54 can barely walk & the pain is of the charts. In August I couldn't walk & weeing pooing without sensation , so the doctor sent me to A & E with note in hand suspected Cauda Equine urgent Mri needed. 5hrs later I'd had enough went home . Carried on best I could went back docs who asked if I'd been A&E which I replied with 5hrs not to be seen isn't on especially since you were to ring the hospital prior to let them know a patient with suspected cauda equina on her way up. Within a week Mri done to be told dics from L5 to L1 GONE with Stenosis (lumbar) having researched the conditions related to this & find its all connected & I'm waiting on neurosurgeon Still...oh what a life to live Not!

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.