Cauda Equina Syndrome: Pain, symptoms, management & prognosis

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?

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

Prayers for you

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

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.

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

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.

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

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.

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.