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Cauda equina syndrome (CES)

Posted by sheabebabe @sheabebabe, May 2, 2017

2011 I started with pain down my legs I could hardly walk it was so painful. After the MRI didn't come out well at a clinic I went to the hospital suicidal saying I'd rather die than live like that another day. They did MRI and found I had L5S1 slipped disk. They admitted me for pain management and started me on pain meds. I was relived finally I knew what was wrong and had meds to help the pain. Found a pain clinic and my first injection was wonderful took the shooting leg pain away. I tried a couple more with little success then the last on he knick something which caused a large hematoma. So very painful. Swore I'd never do it again. Last nov I turned from the sink heard a pop and instant pain I thought it was like other times where some prednisone would do the trick. It got worse I started loosing feeling below and pee just poured out when I stood. I went right to ER. The surgery they said I could not have because of weight was finally being done. 5 months later I still have tons of nerve type pain and I have a foley cuz I have Cauda equina syndrome (CES).

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badapple | @badapple | Mar 17, 2019

I have had symptoms of CES since I had a burst fracture of L1 over 4 years ago. Wasn't diagnosed until recent. So has anyone had success in decreasing this horrific nerve pain? Seeing 2nd surgeon this month. Haven't had any decompression, or any surgery regarding this. It all may be too late.

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badapple | @badapple | Mar 19, 2019
In reply to @skiprel1957 "I can't seem to find a group for cauda equine syndrome so I chose chronic pain...." + (show)
Profile picture for skiprel1957 @skiprel1957

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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I am here,

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badapple | @badapple | Mar 19, 2019
In reply to @qball2019 "@skip1957 No, all these years they kept telling me they couldn't see anything that would cause..." + (show)
Profile picture for qball2019 @qball2019

@skip1957

No, all these years they kept telling me they couldn't see anything that would cause my pain. Then last year one of my new doctors finally said she thought the cysts were causing my issues. From there she sent me to Dallas, TX to see one of only 3 neurosurgeons in the U.S. that specializes in the cysts. He is the one that finally confirmed that they were compressing the cauda equina nerves & causing all my issues. I was waiting for a surgery date but just found out my insurance denied it. Your issue sounds so similar to mine, are you sure you don't have any of these cysts? They do compress at the nerve root. Google Tarlov Cyst Foundation and check them out. Did you request your records and read through them? The radiology reports will most likely tell you more than your doctors were mentioning to you. Ask about all the incidental findings and anything else you weren't informed about. Please send an update after your appt. Good luck to you & take care!

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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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2 replies
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badapple | @badapple | Mar 19, 2019
In reply to @badapple "Reading my reports is what could me to investigate CES, now I have to teach my..." + (show)
Profile picture for badapple @badapple

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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Clued me, not could me

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Profile picture for qball2019
qball2019 | @qball2019 | Mar 19, 2019
In reply to @skiprel1957 "I can't seem to find a group for cauda equine syndrome so I chose chronic pain...." + (show)
Profile picture for skiprel1957 @skiprel1957

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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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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1 reply
Profile picture for qball2019
qball2019 | @qball2019 | Mar 19, 2019
In reply to @badapple "Reading my reports is what could me to investigate CES, now I have to teach my..." + (show)
Profile picture for badapple @badapple

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?

Jump to this post

@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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1 reply
Profile picture for badapple
badapple | @badapple | Mar 20, 2019
In reply to @qball2019 "I have both a pain management doctor and an integrative pain specialist that work together on..." + (show)
Profile picture for qball2019 @qball2019

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.

Jump to this post

Thanks for sharing. I went to 3 pain management drs. 3rd gave me 5 mg oxy. So frustrating I didn't go back.First 2 have a total of 6 injections, no effect. Then my reg. Dr. Gave 25 mcg fentanyl patch. Interrupts sleep, and vivid violent dreams which are uncharacteristic of the norm. Now waiting on surg. Appt. And referral back to 5mg pain dr. So limited in rural healthcare. Especially if in number 1 region for opioid abuse. I get it, but! Also the previously mentioned patches don't make the pain tolerable. I just want to function.

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Profile picture for qball2019
qball2019 | @qball2019 | Mar 20, 2019
In reply to @skiprel1957 "I can't seem to find a group for cauda equine syndrome so I chose chronic pain...." + (show)
Profile picture for skiprel1957 @skiprel1957

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.

Jump to this post

@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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1 reply
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Mentor
John, Volunteer Mentor | @johnbishop | Mar 20, 2019
In reply to @skiprel1957 "I can't seem to find a group for cauda equine syndrome so I chose chronic pain...." + (show)
Profile picture for skiprel1957 @skiprel1957

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.

Jump to this post

@badapple and @qball2019 have you seen the following discussion? I think it may offer some alternative treatments for your pain.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Profile picture for badapple
badapple | @badapple | Mar 20, 2019
In reply to @skiprel1957 "I can't seem to find a group for cauda equine syndrome so I chose chronic pain...." + (show)
Profile picture for skiprel1957 @skiprel1957

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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Thank you John.

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