Cauda equina syndrome (CES)

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.

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

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.

thank you

@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!

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

@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!

@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