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 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.

Hi Everyone, I was directed to this site today by John, a consultant with the Mayo Clinic. I have done my own research on Cauda Equina Syndrome. I just left a for profit HMO where I couldn’t get any attention to my spinal chord injuries from MVA in 2017. I have herniated, fractured, blown out stuff in every area of my spine. If I don’t hold my head in a certain position, I can’t breathe. I have bilateral carpal tunnel so I can’t hang on to anything. From day one post accident, I had difficulty urinating. I told anyone wearing a lab coat that I couldn’t urinate. Then I started feeling like I was sitting on a medium sized russet potato. Although my vaginal area and rectal area felt like they had been shot up with novocaine, the lump sensation was sending shots of pain down the back of my legs. I also had these shock like symptoms like you see when someone is getting defibrillator shocks to start their heart. They would raise my legs off the surface violently. For the icing on the cake, neuropathy 24/7. The only treatment I got for that was one cortisone shot in my right femeral nerve. I couldn’t get the other leg or the sciatic nerves done at the same time. I thought it was rather useless

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 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 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.

Hi,
Middle of night here. 5 months ago, I had the correct surgery for cauda equina symtoms
L4-5 disc herniation, laminectomy, decompression, spacer, fusion. Right now having the same symtoms, pain with peeing, pain rectally ...usually have to use a biscodyl suppository to iniate poop. The pain is so bad ...it is unexplainable. I went to a clinic to get this done, thought it was good, cause for 5 years the pain was insane but no one would listen to me. Right now they aren't
listening, limiting the amount of pain medication treat me like a criminal looking for drugs. Until last year August was never on pain meds. Just kept getting worse...till I found this Clinic, the Nuerosurgeon I thought understood ...but now not listening...surgery turned out great. The pain and bladder & bowel, legs, feet are all still the same, if not seemingly worse. The problem I have is no one understands this problem and how bad the pain is. I've tried going everywhere, 3 medical universities, 10 colorectal surgeons, 2 urogynecologists...I thought finally I found the answer, as it seemed like he knew, but now seems like he could care less. Yesterday, had an EMG done by the supposed pain management Doctor...he was worse , not listening taking the flexeril away ...I'm rather stuck between a hard rock & reality. Who or where in my area of Southern California does
understand and will listen. Not even enough meds to get me through the month. Today I'm going back to one NP who knew and knows what's going on here. Guess I just answered what I was asking, lol. She is also only allowed so much she can prescribe ...but now 5 months post surgery I'm sure she will understand. She also referred me to a good Radiologist Interventionist, he does epidurals, probably my next step. So I hope this made sense, & if anyone out there knows , seen,
have done, has someone who understands please text ...this is totally horrid and my poor family is suffering too. TIA & God Bless you, hope no one ever goes through this!! Thank you 4 reading.

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 had surgery at Rush University Hospital in Chicago for CES on 6/16/21. Like u I had three doctors simply blow off my symptoms for over one year until I could no longer work and was on a walker/wheelchair. My “pain doctor” got an mri and said I had a lot of stenosis. He sent me for injections. That doctor tried to help but never told me I had CES either. By then I could not feel myself pee or poop. I was in a wheelchair. No feeling below knee in either leg. The first pain doctor sent me to his friend who was a neurosurgeon who told me 2 minutes after I walked in his office that I was fat and would die on table if I had surgery. ( by then I had lost about 50 lbs) he gave me a referral to a bariatric surgeon and told me to come back in one year! He never looked at me or my mri or the report. I went home and wanted to just die at that point. I would pray not to wake up in the morning. After a few weeks I called my orthopedic surgeon and asked if his mom needed back surgery who he would send her to. He sent me to dr Gregory Lopez at Midwest Orthopedics at Rush. We did surgery for CES 7 days later. I got back some feeling but still have neuropathy in both feet and calves. I also have reduced feeling in my saddle area. My surgery was 8 hours long. I had 8 laminectomies and L4-L5 fused. I still need other surgery but I am walking with a cane. Just had 1 st visit to dr fogelson at Mayo and will be going back for more tests in December. I do need to lose another 30 lbs. good luck to you!

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.