Cauda equina syndrome (CES)

@badapple
Are you referring to the Lidocaine patches? I did also had 50mcg fentanyl patch for about 13 years and that did help with the pain that I have in the T10-T12 area and down to the lower back. It also helped a little bit with the muscle spasms and sciatica.I still had plenty of pain but it did help and it was the only constant pain relief I had. I didn't have terrible cauda equina until June of 2018. When it wasn't just the sciatica anymore then the fentanyl no longer worked. They weaned me off that and replaced it with the oxytocin troches & ketamine troches.

I hear you on the options in a rural area. We have just a couple choices within a 30 mile radius. We pretty much have to travel an hour away for most doctor appts. If you go back to the same pain management doctor and he wants to repeat the same injections you can tell him you don't want to. Do you remember if they did a sacral nerve block or an epidural? I understand the frustration of being in pain management. I was with the same place for 10 years and all they wanted to do is repeat the same injections even though they never worked. I found out that it's really just a matter of making you a profitable patient. When I refused to do more procedures the doctor got rid of me. Soooo frustrating!!!

@badapple
I hope your surgeon is able to offer you some relief and that you don't end up with any permanent nerve damage or symptoms. Nobody should be left to sit with CES. You need to stress to the doctor how all of the symptoms are affecting your life and make sure he knows the intensity of them as well. If the doctor gives you any flack make sure you stress your concerns. The doctors are supposed to be working for you and you are being charged ridiculous rates for them to do so. After my experience in the medical world I have a whole new outlook. Please keep us updated!

I don't know what the outlook is on whether you will have permanent nerve damage or not. From what I have researched on my own it seems like it's a 50/50 chance. The surgery that I'm looking at has a 2 year recovery period because nerves take so long to grow back or repair themselves. One of my doctors has had the same surgery and she said it takes all of the 2 years for sure to recover. I'm scared to death about permanent nerve damage. I have all of the cauda equina symptoms going on and now last week I was told I have peripheral neuropathy, allodynia, and hyperalgesia as well. I guess that means that there is already some permanent nerve damage. My accident took place many years ago and I've suffered with severe pain ever since - just slowly spiraled down over the years. Just as of June 2018 the cauda equina has really kicked into high gear and I've been going down the tubes ever since.

Hope this helps you a little bit

@SkiprelI957 If you're avoiding surgery, I have intractable pain after two FUSIONS (2nd successful) that only ceases after tons of narcotics. My pain management doctor has suggested a "intrathecal pain pump" where they implant a hockey puck-sized receptacle to the left or right of your belly button. From that receptacle a catheter tube is threaded under the skin to the spine where it directly releases meds directly into your spinal fluid. They generally do a trial run first but it sounds pretty exciting.The pump is filled generally with morphine (Baclofen for spasms) and you go back to the doctors office every 4 to 6 weeks (unsure of intervals, could be longer!) for your "refill" and they say you're in/out in 15 minutes. It runs on a battery which lasts 5-7 years. This traditionally was given to terminal patients, but more and more pain management doctors are using it on chronic pain patients, especially ones they can't figure out the source of the pain, like ME. As this technology is nearly 100 years old, they've got it down. GOOGLE it. I'm going for it. It might help you. Good luck. Jolene Kellner

I am 38 and new to CES. In July 2018 my back started to hurt. I stepped out onto my front porch heard a pop, drop to my knees and lost all feeling in my right leg. Had my children help me to my bed call the ambulance. When the ambulance arrived they asked me to sit up so I did and I heard another pop screamed from the pain and almost blacked out. Lost all the feeling from the waist down. Arrived at my local hospital where they give me pain medicine told me to go home and call my local provider. I was not satisfied with that so I had a friend drive me 2 hours to another hospital. The hospital gave me an emergency MRI and told me I had to have surgery right away. (I went in to emergency surgery only 3-4 hours after the nerves were compressed). When I woke from surgery I had little feeling in the front of my legs, none in the back of my legs, and my whole saddle area is numb/on fire. I did physical therapy but that cause a lot of pain. I ended up having surgery again Feb 2019. I still have lots of pain and it seems nothing is getting better. I take 100 mg Lyrica 2 times a day and spend 90% of my time in bed. It hurts to walk, sit, or function like a normal person. No one understands.

I am 38 and new to CES. In July 2018 my back started to hurt. I stepped out onto my front porch heard a pop, drop to my knees and lost all feeling in my right leg. Had my children help me to my bed call the ambulance. When the ambulance arrived they asked me to sit up so I did and I heard another pop screamed from the pain and almost blacked out. Lost all the feeling from the waist down. Arrived at my local hospital where they give me pain medicine told me to go home and call my local provider. I was not satisfied with that so I had a friend drive me 2 hours to another hospital. The hospital gave me an emergency MRI and told me I had to have surgery right away. (I went in to emergency surgery only 3-4 hours after the nerves were compressed). When I woke from surgery I had little feeling in the front of my legs, none in the back of my legs, and my whole saddle area is numb/on fire. I did physical therapy but that cause a lot of pain. I ended up having surgery again Feb 2019. I still have lots of pain and it seems nothing is getting better. I take 100 mg Lyrica 2 times a day and spend 90% of my time in bed. It hurts to walk, sit, or function like a normal person. No one understands.

Hi, @skiprel1957 - welcome to Mayo Clinic Connect. I realize that though many people experience low back pain, the pain that comes with Cauda Equina Syndrome can be very severe.

I'd like to invite into this conversation @johnbishop @dawn_giacabazi @kariulrich @jenniferhunter @jefferie to offer their input related to the extreme pain you are experiencing, and the way the pain meds are not helping very much.

Are you a candidate for further surgery to address this, @skiprel1957?

OMG! I'm in tears I found my people. Hard for me to do on this site. 16weeks post, laminectomy. I suffered for 6 years to get an mri , crazy I know. Doc just wanted more pt. He still refers to it as spinal stenosis, which yes was also a factor but, CES is why I have permanent nerve damage, weak L. Leg. Drop foot, retaining bladder. Hey no saddle feels. ( joking. Not a bonus) @ 61 y/o. Also have, A Lawyer, A new doc. Partridge in a pear notwithstanding. 🤭 glad I found 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.

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.