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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).

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Profile picture for Lisa Lucier, Moderator
Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 17, 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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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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2 replies
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Mentor
John, Volunteer Mentor | @johnbishop | Feb 17, 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

Hi @skiprel1957 – I would like to add my welcome to Connect along with @lisalucier. There is another discussion for Cauda Equina Syndrome (CES) that you may want to join here:

Groups > Chronic Pain > Cauda equina syndrome (CES)
-- https://connect.mayoclinic.org/discussion/my-story-in-short/

@1959karie, @ledgerwp, @sheabebabe, @dhuffman1969, @paladin121 and @iowagirl06 have discussed CES in the above discussion and may be able to offer some suggestions. Also, I found some information that may be helpful.

Cauda Equina Syndrome: Causes, Symptoms and Treatment
-- https://www.disabled-world.com/disability/types/spinal/backpain/ces.php

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Profile picture for vklittle61
vklittle61 | @vklittle61 | Feb 17, 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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Prayers for you

REPLY
1 reply
Profile picture for lorirenee1
lorirenee1 | @lorirenee1 | Feb 18, 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

Hi Skip,
I do not have what you have at all, except that after breast cancer surgery, within 4 weeks, I developed severe nerve damage in my feet, and pretty much have severe pain on a daily basis; thank God, not all day, but parts of the day. I know what excruciating pain feels like. So I am posting all the things that have helped me, in that they might help you. The meds, such as Gabapentin, Lyrica,....the ones to treat nerve pain, have not worked that well, but take the edge off. What has helped, but only at times. are Lidocaine patches, 5% Lidocaine, prescription dose. You put the patch on wherever hurts, and it numbs the area all day. There are 2 products that have helped me tremendously for immediate pain, when you can't take it anymore. They are CBD products that I researched on line for hours, and come from two different companies. Maybe they will help you. One is a salve, that you rub into areas that hurt, and it helps immediately. It is a Godsend for me. It is from the Ananda CBD oil company. They have only one salve, so you cannot buy the wrong one. It is about twenty five dollars, and worth every penny. The other product is a tincture, and you put the CBD drops under your tongue. It is very relaxing and distances you from your pain. You don't get high from it, but it creates immediate relaxation. This product is from the CBD oil Distillery company. I use the 1000 mg. CBD oil, and stick drops under my tongue. There are two 1000 mg. products, and I use the one that is about 5 bucks more, because it contains a bit of marijuana in it, is still legal, and works so well. You may explore even stronger milligrams. I am also exploring getting stem cells. Living with pain is no joke, and you have way beyond this. To be frank, Lawsuit also came to mind when I read about you. Get all your surgical records, a good malpractice lawyer, and find out what happened to you. I hope you don't mind me saying that. I just go really upset after reading the horror you are going through.

God bless, and regards in your journey...

Lori Renee

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1 reply
Profile picture for skiprel1957
skiprel1957 | @skiprel1957 | Feb 22, 2019
In reply to @lisalucier "Hi, @skiprel1957 - welcome to Mayo Clinic Connect. I realize that though many people experience low..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

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?

Jump to this post

Not sure about anything right now. My surgeon stuck his head in the sand and has not told me anything about CES. See a new surgeon Monday. There may be A surgery on the nerves, maybe a nerve stimulator, but this info is what I've researched on the net. I do have a Neurologist I've been seeing for about 15 years. Matter of fact he recommended the Surgeon that performed my surgery. The next meeting with him should be interesting. I'm hoping the new Dr. I'm seeing Monday will have some insight on CES and will be able to help. Having such a rare thing like CES makes it so bad because the Doctors I've dealt with so far have no idea what to do. Research I've done only yields information on what CES is and the emergency surgery needed within the first 48 hours. I have found nothing about what to do, post surgery, frustrating. Thank you for responding.

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3 replies
Profile picture for skiprel1957
skiprel1957 | @skiprel1957 | Feb 22, 2019
In reply to @sheabebabe "Sorry about some of my spelling" + (show)
Profile picture for sheabebabe @sheabebabe

Sorry about some of my spelling

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Hell, don't worry about spelling when you have a spell check, smile. My situation started years ago. I'm an Army Vet and spent about 3 years at the VA having injections, with no help at all. I had, what I thought at the time was pinched sciatic nerve. In all their wise wisdom and taking direction from the US Government, the VA took me off pain medication. I spent 3 more years in severe pain with no pain meds and finally decided to have surgery. Found out after surgery that the sciatic nerve was actually crushed in two places. Had L3,4,5 fusion, with a laminectomy. Then a hematoma caused CES. Lost bladder function, bad balance, severe back pain, numbness and pain down my legs, pins and needles in my right foot, have to use a cane, walker, or wheel chair depending on how far I need to go. The only positive thing so far is I ended up having prostate surgery because I have an enlarged prostrate, My urologist suggested the surgery because of my week bladder from CES and the enlarged prostrate, surgery may be the only chance to get off the catheter. Low and behold it worked and after 6 months with a catheter I was able to urinate on my own. I have control issues and at times leak, But I'm very thankful, Prostate surgery wasn't any fun but I would do it again and again for the same results. I suffer from all the other problems and take one day at a time to get through it. It really effects me mentally, on anti depressants on so on. Your story is very interesting, sounds like the hematoma may have caused your CES. How long after the injection was it before you were diagnosed with CES? and is it possible you had the hematoma the whole time? If so you may want to contact a Lawyer. Get back to me I would love to talk some more Thanks for the response. Skip

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Profile picture for skiprel1957
skiprel1957 | @skiprel1957 | Feb 22, 2019
In reply to @dhuffman1969 "I broke my back landing my glider almost 4 years ago. I have suffered with CES..." + (show)
Profile picture for dhuffman1969 @dhuffman1969

I broke my back landing my glider almost 4 years ago. I have suffered with CES ever since. There must be some treatment.

Jump to this post

Hello, my name is Skip. Sorry to hear about your accident. I've had CES for the last 8 months, hematoma after back surgery compressed the nerves at the nerve root. I've done allot of research and I can't find anything about treatment post surgery. All I can find is about the emergency surgery that must be done within the 48 hour time frame after being diagnosed and what CES is. That's one of the reasons I got on this support group, In hopes to find out what others may no about any treatment. Get back with me, thanks for the response. Skip

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Profile picture for lorirenee1
lorirenee1 | @lorirenee1 | Feb 22, 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

Skip, Best of luck with the new surgeon. I think new minds is the way to go. Keep seeing different people. You never know if one has help for you. My prayers and regards. Your illness is such a serious battle. Prayers to you. I pray at nite before bed....Lori Renee

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skiprel1957 | @skiprel1957 | Feb 22, 2019
In reply to @iowagirl06 "I have had CES for 12 years. Im 53 , and had been improving the last..." + (show)
Profile picture for iowagirl06 @iowagirl06

I have had CES for 12 years. Im 53 , and had been improving the last 4 years. I went off SSDI and Medicare and went back to an office job full time. Now, a year after getting all that done, my symptoms are getting worse every day. Started with the leg pain, then bladder incontinence, then bowel incontinence, and pretty severe pain in the lower back area. Now I'm at a loss once again as to what to do or where to go for help. I felt like I had gotten the best I could get and hoped it would stay that way. Anyone else have a swing in symptoms like this? Am I going to end up self catherizing again? So scared, and no one understands! Any info would help.

Jump to this post

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

REPLY
1 reply
Profile picture for skiprel1957
skiprel1957 | @skiprel1957 | Feb 28, 2019
In reply to @lorirenee1 "Hi Skip, I do not have what you have at all, except that after breast cancer..." + (show)
Profile picture for lorirenee1 @lorirenee1

Hi Skip,
I do not have what you have at all, except that after breast cancer surgery, within 4 weeks, I developed severe nerve damage in my feet, and pretty much have severe pain on a daily basis; thank God, not all day, but parts of the day. I know what excruciating pain feels like. So I am posting all the things that have helped me, in that they might help you. The meds, such as Gabapentin, Lyrica,....the ones to treat nerve pain, have not worked that well, but take the edge off. What has helped, but only at times. are Lidocaine patches, 5% Lidocaine, prescription dose. You put the patch on wherever hurts, and it numbs the area all day. There are 2 products that have helped me tremendously for immediate pain, when you can't take it anymore. They are CBD products that I researched on line for hours, and come from two different companies. Maybe they will help you. One is a salve, that you rub into areas that hurt, and it helps immediately. It is a Godsend for me. It is from the Ananda CBD oil company. They have only one salve, so you cannot buy the wrong one. It is about twenty five dollars, and worth every penny. The other product is a tincture, and you put the CBD drops under your tongue. It is very relaxing and distances you from your pain. You don't get high from it, but it creates immediate relaxation. This product is from the CBD oil Distillery company. I use the 1000 mg. CBD oil, and stick drops under my tongue. There are two 1000 mg. products, and I use the one that is about 5 bucks more, because it contains a bit of marijuana in it, is still legal, and works so well. You may explore even stronger milligrams. I am also exploring getting stem cells. Living with pain is no joke, and you have way beyond this. To be frank, Lawsuit also came to mind when I read about you. Get all your surgical records, a good malpractice lawyer, and find out what happened to you. I hope you don't mind me saying that. I just go really upset after reading the horror you are going through.

God bless, and regards in your journey...

Lori Renee

Jump to this post

Hi Lori, sorry for not responding sooner, seems I spend most of my time at Doctor visits. Sorry to hear about your cancer, are you in remission? I hope so. I have looked into CBD oils, currently I'm a medical marijuana patient, found a strain of weed that seems to help some with pain and I'll take anything I can get. The strain is White Widow, everyone has their own strains so it depends on where you purchase seeds from, not all White Widow strains will be the same. Marijuana helps me with a lot of things that I deal with like insomnia and at times just getting through the day. Talked to my new Surgeon, he ordered EMG test on both legs and discussed another surgery that may help but I'm real gun shy about more surgeries, at least right away. He asked me if I had a Lawyer, I was a bit hesitant but I said yes and the reason he asked was he felt it was important that they get his records as well. Seems the surgery he says I need was caused by the surgery I just had. So far two Doctors have made suggestions that I should sue the Surgeon that did my surgery. The idea of suing someone doesn't sit well with me but someone needs to pay for what they did to me. I'm 61 and feel I have some years ahead of me but now the prospect is dim.

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