Cauda Equina Syndrome: Pain, symptoms, management & prognosis
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'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
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.
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
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
I am here,
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?
Clued me, not could me