Cauda Equina Syndrome: Pain, symptoms, management & prognosis

Posted by skiprel1957 @skiprel1957, Sun, Feb 17 5:34pm

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, @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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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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Prayers for you

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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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@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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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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@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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Hi Skip, You have enough on your plate to worry about apologizes to me! Oh my! Thanks for asking about my cancer. Yes, it is in remission so far. Should be a joyful time for me, and at some level it is, but at the same time, my foot neuropathy is horrid, so it takes from the joy. I don't remember if I told you, but I got severe neuropathy right after my breast cancer surgery, so lawyers came to mind for myself, as well as you! You have to be made of very strong stuff, and have lots of money to start law suits. When I read about you, though, I really did think your surgery caused your problems that you have now. LAWYER jumped to the forefront of my mind. I think you would have to have a tough advocate in your corner to help you through such a difficult process. I swear though, your problems smell of big bucks owed to you. You just have to have the stomach to handle it. I do not blame you for being hesitant for more surgery. I am sure hesitant is way too mild a word. If I got more breast cancer, I would think twice as well, for God knows what would happen afterwards. I actually had a premonition about my breast cancer surgery. I thought that I would never have good health again. Terrible. Don't even know why I felt this way. Anyway, I take my marijuana over the counter stuff when the going gets very tough, and I am sure how much it helps you as well. Who would believe life could get so rigorous? One crazy thing that helps me, but it does, is I go to youtube and laugh my head off at old Rodney Dangerfield comedy acts, and find many other comedians that I adore. The oldies are the goodies, as I am 66, and love the laughter they bring. Maybe try it!!! So much on youtube that is great. I am also a wannabe beautician, so I watch hair cutting videos all the time. Been cutting my own curls for many years, and learn so much on youtube. Anyway, best of luck to you. Frankly, my heart breaks reading everything you are going through. I am sure you never would have believed such crap could happen to you. LIfe is lovely. Life is tragic. Regards to you, in your journey….trust yourself. Lori Renee

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Cauda equina syndrome is normally an emergency unless you have Tarlov cysts also called perinerual cysts. I just found this out after 15 years of being called a "chronic pain patient". You could have developed them from some previous injury or possibly from your surgery.

Doctors rarely seem to want to acknowledge these cysts because they were told in medical school that they don't cause any issues. True, there are people that have the cysts and they may not experience any issues but if they decide to grow larger they cause many debilitating symptoms. If they can't seem to find any issue for your CES you need to request your records and see if there is any mention of the cysts. Also, ask your doctor to bring up your images from your pelvic scan (while you're in office) and look to see if you have any of these cysts. Remind your doctor that you are trying to avoid permanent nerve damage.

I do realize that I'm replying to an old thread but thought it may also help someone else with a similar issue.

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@skiprel1957

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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It seems strange to me that doctors have no idea what to do. They should be familiar with what action or recommendations to make for CES. I'm sure they recognize that your surgeon should be taking action. From my experience, it seems like doctors generally work together and stick up for one another. It may be that the doctors aren't wanting to treat you because they don't want a lawsuit on their hands that should belong to someone else. I really don't know but it seems like they are really giving you the runaround.

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@lorirenee1

Hi Skip, You have enough on your plate to worry about apologizes to me! Oh my! Thanks for asking about my cancer. Yes, it is in remission so far. Should be a joyful time for me, and at some level it is, but at the same time, my foot neuropathy is horrid, so it takes from the joy. I don't remember if I told you, but I got severe neuropathy right after my breast cancer surgery, so lawyers came to mind for myself, as well as you! You have to be made of very strong stuff, and have lots of money to start law suits. When I read about you, though, I really did think your surgery caused your problems that you have now. LAWYER jumped to the forefront of my mind. I think you would have to have a tough advocate in your corner to help you through such a difficult process. I swear though, your problems smell of big bucks owed to you. You just have to have the stomach to handle it. I do not blame you for being hesitant for more surgery. I am sure hesitant is way too mild a word. If I got more breast cancer, I would think twice as well, for God knows what would happen afterwards. I actually had a premonition about my breast cancer surgery. I thought that I would never have good health again. Terrible. Don't even know why I felt this way. Anyway, I take my marijuana over the counter stuff when the going gets very tough, and I am sure how much it helps you as well. Who would believe life could get so rigorous? One crazy thing that helps me, but it does, is I go to youtube and laugh my head off at old Rodney Dangerfield comedy acts, and find many other comedians that I adore. The oldies are the goodies, as I am 66, and love the laughter they bring. Maybe try it!!! So much on youtube that is great. I am also a wannabe beautician, so I watch hair cutting videos all the time. Been cutting my own curls for many years, and learn so much on youtube. Anyway, best of luck to you. Frankly, my heart breaks reading everything you are going through. I am sure you never would have believed such crap could happen to you. LIfe is lovely. Life is tragic. Regards to you, in your journey….trust yourself. Lori Renee

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I'm happy to hear that your in remission, that's great. I no that the neuropathy is bad because mine was bad before surgery, now I have bad pins and needles in my feet from surgery on top of the neuropathy, I know it really sucks, All the numbness and pins and needles makes it feel like I'm walking on a dead foot. I always considered my self as being pretty tough old SOB , I do take pain very well but this can get pretty bad. I'm a veteran and VA took my pain meds away so I went three years with no meds, pain got so bad, that's why I decided to have the back surgery. They said my sciatic nerve was crushed in two places so you can imagine living life for three years with condition. Only some weed to help, I finally found a strain of Marijuana that helped my pain
I've been on disability for 17 years. Had A cerebral brain hemorrhage in 2002, caused moderate brain damage and almost killed me. Ended my career and now I have another life altering issue. At times life sucks bad but I say it's like standing at the plate, always take your best swing and go on to another day. So dealing with A law suite is no big deal, it's just the waiting around to find out if I even have a case that bothers me a bit.
As you I love you tube as well, Any time I need some info or just want spend some time exploring I go to YouTube. Seems that everything imaginable is on it. There are some people that share their CES experiences on there and I've learned from that. One guy was doing therapy for his CES, but I could see that the type of machines he was using told me that his therapy was very expensive. I guess if you have money you may get better help. I'm trying to walk more without my cane, doing this, I use different back muscles, It's really hard for me to walk though because of the nerve pain. I no this is kind of hard for me to say but I have rectal nerve pain besides the pain in my legs and back. I guess you could say it's a real pain in the butt, smile. have to make fun some times.
been great talking
Skip

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@qball2019

Cauda equina syndrome is normally an emergency unless you have Tarlov cysts also called perinerual cysts. I just found this out after 15 years of being called a "chronic pain patient". You could have developed them from some previous injury or possibly from your surgery.

Doctors rarely seem to want to acknowledge these cysts because they were told in medical school that they don't cause any issues. True, there are people that have the cysts and they may not experience any issues but if they decide to grow larger they cause many debilitating symptoms. If they can't seem to find any issue for your CES you need to request your records and see if there is any mention of the cysts. Also, ask your doctor to bring up your images from your pelvic scan (while you're in office) and look to see if you have any of these cysts. Remind your doctor that you are trying to avoid permanent nerve damage.

I do realize that I'm replying to an old thread but thought it may also help someone else with a similar issue.

Jump to this post

My CES was caused by a blood clot after back surgery. They did the emergency surgery within the allotted time but significant nerve damage was done.

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In reply to @vklittle61 "Prayers for you" + (show)
@vklittle61

Prayers for you

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thank you

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@skiprel1957

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.

Jump to this post

@skiprel1957
You need to keep pushing and asking questions. When your doctor puts his/her head in the sand and doesn't do anything more for you then it's time to find another doctor. Request your records including any imaging discs. You should collect all your records before going to another doctor. Push for answers and tell them you're tired of being ignored right off the bat. I've done it for 15 years because the doctors kept telling me they didn't see anything that would cause my pain. Come to find out, the problem showed up in the very first MRI they did! I've slowly deteriorated over the years. Last June the CES symptoms started snowballing and currently are continuing to progress. I have Tarlov Cysts and a tethered cord caused by a fall. Doctors don't acknowledge the cysts because they are an "incidental finding" and aren't supposed to cause issues. They DO cause many debilitating symptoms and need to be taken care of. I absolutely understand your frustration cuz I've gone through it all too. It upsets me to no end that it's an emergency surgery for everyone else but because they won't acknowledge the cysts it's not for me. One of my doctors just told me she would recommend a lawsuit because of they way I've been treated (or mistreated I guess). I'm just left here to suffer just like you!

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@qball2019

@skiprel1957
You need to keep pushing and asking questions. When your doctor puts his/her head in the sand and doesn't do anything more for you then it's time to find another doctor. Request your records including any imaging discs. You should collect all your records before going to another doctor. Push for answers and tell them you're tired of being ignored right off the bat. I've done it for 15 years because the doctors kept telling me they didn't see anything that would cause my pain. Come to find out, the problem showed up in the very first MRI they did! I've slowly deteriorated over the years. Last June the CES symptoms started snowballing and currently are continuing to progress. I have Tarlov Cysts and a tethered cord caused by a fall. Doctors don't acknowledge the cysts because they are an "incidental finding" and aren't supposed to cause issues. They DO cause many debilitating symptoms and need to be taken care of. I absolutely understand your frustration cuz I've gone through it all too. It upsets me to no end that it's an emergency surgery for everyone else but because they won't acknowledge the cysts it's not for me. One of my doctors just told me she would recommend a lawsuit because of they way I've been treated (or mistreated I guess). I'm just left here to suffer just like you!

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Already had my first appointment with a new Surgeon, will never go back to the hospital I had surgery at, nor do I ever plan to see my Surgeon that did the surgery, unless it's with Lawyers staring at each other across the table. Had my new Surgeon contact my pain Doctor, I'll find out what he said to her at my next appointment. Seems like he's willing to work with her. I agree with you, I'm not going to let a Doctor treat me like he did. especially when he handed me my diagnosis written on an envelope so I could google it. Never even discussed my diagnosis with me. I have an appointment with my Neurologist later this month, He recommended the Surgeon for back surgery. Should be an interesting visit seeing I'm going to show up in a wheelchair. I don't hold anything against him, he had no way of knowing it would turn out this way. I've been seeing him for about 15 years so we're a bit bonded I guess.
Did anyone tell you the nerves have been compressed at the nerve root? That's what the blood clot did to me. I told the Lawyer that when I was brought back to my room in intensive care my Son saw that the tubing for the drain in my back was pinched off and the drain was not working. Next day they had a new style of tubing. Not sure if that was the cause of the clot or not. Lawyer didn't seem to be enthused about it. I'll have to see what they find in the records. My new Surgeon asked if I had talked to a Lawyer, I said yes, then he said They will want his records as well. He told me the first surgery has caused the need to have another surgery below the first surgical area. Next time I see him I will request that he has the MRI's in front us so I can see what he's talking about. after 2 back surgeries and a prostate surgery I'm a bit gun shy as to having another one. I can only hope that someone listens to you and you get the help you deserve.
out for now,,,,,,,,Skip

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