Cauda Equina Syndrome: Pain, symptoms, management and prognosis

Reading my reports is what could me to investigate CES, now I have to teach my doctors. Car accident 4.5 years ago. Living in pain hell, nothing has helped. Burst fracture of L1 resulting in compression and only 10% of vertebrae remains. A long list of attempted relief. None effective. Seeing second surgeon consult next week. Can anyone suggest what I need to tell them? Ask them? Any hope this far out?

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I have both a pain management doctor and an integrative pain specialist that work together on my care. I am prescribed oxytocin troches & ketamine troches. They dissolve under your tongue and work together for pain. I have to say, it's the best pain relief I've had so far. They are considering a ketamine infusion.

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@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!!!

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@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

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@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

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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?

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