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Thread: Husband's Recent L5-S1 Disc Rupture causing Cauda Equinas Syndrome

  1. #1

    Husband's Recent L5-S1 Disc Rupture causing Cauda Equinas Syndrome

    I am on here trying to find out as much information as possible about my husband who suffered a Complete CES--L5-S1.Here is what happened: We knew he had a herniated disc back in December 2013 when we met with the spine surgeon to review his MRI after ongoing pain that the chiropractor couldn't fix. He recommended a fusion or injections to try to put the fusion off for as long as possible. Due to my husband's young age (32) we opted to wait and try injections with the very rare possibility (less than 2%) that the herniation could rupture into the spinal column causing a medical emergency. Injections were working well and fast forward to May 22nd. My husband stayed home one evening while I took our two kids to my cousin's house to play. He was cleaning up light scrap metal from our house renovation that had been piling up in our yard. The surgeon believes that the repetitive bending over and twisting may have ruptured the disc because he wasn't lifting more than 10 lbs although there was no definitive "ouch" moment.

    The next day his left leg went numb but this was not abnormal as that was a common symptom of his herniated disc. Saturday morning however his right leg was on fire which was something that had never happened before. He told me about it and we decided that he'd take it easy while I went to a hair appointment. When I came back from my appointment it was mid-afternoon and he said that he was having some tingling through his penis back to his rectum. We decided to call the Cincinnati Spine Institute and page the doctor on call. When they called back they said that he needed to keep an eye on this, rest, ice, and if he lost the control of his bowel and/or bladder to go to the ER. My husband woke me up at 3:30 am Sunday morning because he had gotten up to go get more ice for his back and was urinating down his leg. We drove straight to the ER where they ran an MRI to find that he had ruptured the L5-S1 disc into his spinal column. Surgery was set for the Monday morning and he was put on steroids to try to reduce inflammation for the time being. However, after a reassessment of his sensation the PA paged the spine surgeon and said that although his legs were getting better with numbness/feeling that he was actually getting worse internally (losing muscle tone in his rectum) and that the next step would potentially be permanent paraplegia. The spine surgeon drove straight in and my husband had a discectomy less than two hours later.

    They say that his rupture was one of the worst that they've ever seen (typically seeing 15% of the disc rupture and his was at least 50%). He was initially able to urinate on his own although he really had to strain really hard to do so. The urologist ran a Urodynamics Test to determine that his bladder is basically paralyzed and the natural contraction that we have isn't happening at all for him. He has since started to self-cath to prevent permanent damage to the bladder from over filling. He can have a bowel movement but it isn't normal and his doctor is baffled as to why he can go but never a complete bowel movement and he always has the sensation of feeling like he has to go and something being stuck in his rectum (he said it initially felt like a baseball but now feels like a golf ball). His left leg has numbness in spots and he walks with a limp. At this point he can get an erection but it is only partial and sexual intercourse just isn't possible. He is 8 weeks post-surgery today. He is on Lyrica in hopes to regenerate the nerves and FloMax in an attempt to help with the bladder sphincter. At his 8 week post-op appointment, the spine surgeon said that if his bowels don't improve by the next appointment that he will refer him to a Spinal Cord Injury Specialist who will try to work with him on the bowel movement issues.


    I am here trying to stay as educated as I can on his situation--one of the best ways to do that is to talk to others in similar situations and with similar injuries. Is anyone dealing with something similar? If so, what was your recovery like and when did you start to see changes/improvements? I am especially curious about anyone who has lost the bladder/bowel function and would like to know if you ever regained your ability back? We are being told that a 100% recovery is highly unlikely and that he will more than likely have some level of damage although the degree is unknown. Thank you in advance for any stories, information, and/or suggestions.

  2. #2
    Welcome to CareCure. Can you get your husband to join us too??

    There are quite a number of people who are members who have CES. The picture you paint of your husband's experience is unfortunately fairly common. If is often undiagnosed, and often people do not get referred to a urologist and a SCI specialist physiatrist (PM&R) physician at all, so it is good this is being done for your husband.

    Just a few clarifications. The danger is when disk rupture into the spinal CANAL (which contains the spinal cord and cauda equina), not into the spinal column (which is the bones of the vertebrae. Lyrica (or Neurotin) are drugs used for neuropathic pain. They don not make the cord or cauda equina grow or repair themselves (regenerate). We really don't know anything that will do that right now. Neuropathic pain in the perineum and rectal areas are common in CES, and while some medications and modalities (such as acupuncture or TENS) may help with this, it is rarely possible to make it go away completely.

    Intermittent cath is the best bladder management method at this time. He needs to be sure he does not get more than 450ml. in his bladder at any time, and is cathing at least 5-6X daily. Flomax is rarely helpful in CES with a flaccid bladder, and could actually result in him being incontinent in addition to having to cath. He does need to get onto an effective bowel program to prevent bowel accidents and constipation.

    Any return he gets is due to incomplete damage and the nerves recovering from swelling and compression. It is impossible to tell how much, if anything, he will get back. It generally takes at least 2 years to know this, although the most rapid return occurs in the first 3-6 months.

    The urologist he saw should also be offering him help for his erectile dysfunction, and looking for therapies that help with this. Although oral ED drugs usually do not work in CES, they are worth a try. More common is the use of a vacuum pump erection device, and/or a trial with penile injection therapy. Do you have children? Are you planning to have children? Has he been able to ejaculate with either masturbation or intercourse? It is not uncommon that there are problems in this area too. The SCI physician should be able to refer him to services for sexual rehabilitation other than just the ED management that the urologist should offer.

    Please come back and ask more questions. We will try to help as much as we can.

    (KLD)

  3. #3
    I will ask him if he wants to register but I doubt that he will. He runs two businesses and when he comes home he tries to stay away from the computer as much as possible as they are both internet based businesses.

    Thanks for the clarification on the difference between the canal and column. I will make sure I get it right from now on. The spine surgeon that my husband sees said that there had been some evidence in some recent studies that he read that said it was believe to potentially help with nerve regeneration and that often CES patients have nerve pain (my husband didn't have any at that time) so he was going to go ahead and put him on it. He still doesn't seem to have any pain--not sure if he just never had any or if it's the Lyrica.

    He is cathing every 3-4 hours although his urologist wants him to try to urinate at first as much as he can without using his ab muscles to push. He then caths off any residual left over. When he gets to 75ml or less residual then he wants to order another Urodynamics test to see if he has regained the contraction of the bladder. The FloMax was to help relax the bladder sphincter. He has seen improvements in both the flow of urine and the residual number decreasing and a lot of the CES patients on the other site that I am on felt like this medication helped them as well. The spine surgeon said he would make a referral to a Spinal Cord Injury Specialist at his next appointment which is in about 2 weeks if his bowel movements hadn't improved. He just said he wanted to give them a little time so I'd say that he will have an appointment with them shortly.

    He has had moments where he feels "normal"--no numbness and full sensation--in both his left foot and his saddle region. It tends to be short lived and is almost like the circuit board is trying to reconnect or so he says. We are hoping that this is a positive sign that his nerves are trying to regenerate back to normal.

    The Urologist mentioned medication at his last appointment and my husband said that he wanted to wait a little bit as he is able to get an erection but probably only 75%. The spine surgeon at his last appointment approximately a month ago said that there was no reason to wait and that he would talk to the Urologist--they're colleagues in the same hospital and have been working together on my husband's case closely--to tell him to do something at this next appointment. We have attempted intimacy but it just isn't going to work at this point. He did have a moment where he gained full sensation during an attempt to be intimate and was able to climax but the sensation very quickly went away afterwards. We have two children. Actually, when all of this happened we had a 3 month old at home that he was unable to hold for 4 weeks. At this point we didn't have plans for another child for at least 3-4 years, if at all. We were just planning on seeing how we felt about one more when we got to that point.

    A few more questions:

    I have read about getting Botox injections in the bladder to help with CES patients. My husband leaks but generally just after urinating and it is very minimal. This to me would seem to be a really bad idea if you were wanting to regain the bladder contraction as Botox relaxes the muscles?

    Is there anything that he could be doing in the mean time to try to help with bowel movements? He takes Metamucil twice a day and generally eats pretty healthy.

    I appreciate that information and quick response back. I am just trying to educate myself as much as I can so I can attempt to help him in any way possible.

  4. #4
    I am assuming he has no anal sphincter tone...is that correct? This is what is called an areflexive or lower motor neuron (LMN) bowel. You don't want the stool to be too soft. If it is, everytime it moves into the rectum it will come out as the anal sphincter cannot hold it inside, esp. if he does something involving valsalva (such as coming to a standing position or walking). Stool should be kept VERY firm (but not hard). Metamucil may not be the best thing to use for this, as it tends to soften the stool. We would recommend doing bowel care after each meal. If needed, use a bisacodyl suppository to bring stool into the rectum about 30 minutes after the meal, then sit on the toilet and strain (gently) to get any stool in the rectum out. We also have patients who need to manually remove this stool to evacuate; use no more than one finger to pull it out with a hooking motion. If he is hypersensitive to pain there (common) using lidocaine gel (2%, prescription required) as the lubricant on the gloved finger will help.

    As I said, rarely do the oral ED drugs work for CES, so it would be important to have a back-up plan for ED management other than medications (with the exception of penile injection therapy). Keep in mind that there are many ways to be intimate other than just penile-vaginal intercourse.

    He should also see a physical therapist and have his limping evaluated. He may need bracing as a "drop foot" is common in CES, and walking without bracing can put him at risk for falls and even breaking his ankle by stepping wrong on it.

    Bladder Botox is not indicated for someone with a flaccid (LMN) bladder. It sometimes is used for the external sphincter, but he would need to have urodynamics that includes a sphincter EMG to see what is happening with his sphincter, and it often does not work to relax the sphincter. Right now, the tight sphincter is actually good as it is preventing him from being incontinent of urine between his caths. He should be careful straining to void as this can sometimes cause long-term problems, and may make him also have a bowel movement at an unplanned time/place (a bowel accident).

    (KLD)

  5. #5
    He actually does have anal sphincter tone and that baffled the spine surgeon. He said generally it is all or nothing and that if he had tone that he should be able to have a bowel movement. He can have a bowel movement but they are generally just little pieces at a time, never anything large. He can sometimes have 3-5 a day and says that he always feels like he has to go. He also says he feels like there is a constant pressure in his rectum (right after surgery he said it felt like the size of a baseball but now feels like it's gone down to the size of a golf ball). The only answer that we got on that after they re-admitted him to the hospital to run every test imaginable to see what was going on was that it was due to the nerve damage.

    I will definitely pass on the information about other methods besides medicine--he is going back to the urologist next week.

    I have wondered about his limp and whether or not that was something we needed to be doing more about. Thanks for the information in regards to PT. We will definitely ask his surgeon about it.

  6. #6
    If he has anal tone, then it is important to also assess if he has voluntary control over his anal sphincter. Can he relax and tighten the anus at will? If not, then he may need to use a procedure such as digital stimulation to relax the anal sphincter for stool to be allowed to pass when he is straining. A PM&R physician can help him with an effective and healthy bowel program.

    (KLD)

  7. #7
    Thank you. I am assuming this was the doctor that his spine surgeons said he would start sending him to after his next appointment if things hadn't improved. I will keep in touch and let you know what they decide to do. CES is just frustrating. It'd just be nice to know if what is going on in his life currently is going to forever be the new normal or if we can expect improvement.

  8. #8
    Update:

    As of last Friday my husband had a change with his bladder function. He said that he was able to feel pressure--he would feel like had pee but not that he was necessarily full. When he'd go pee he would get out 200-250 ml and then cath only having 25 ml of residual and sometimes less than that. We kind of held our breath as he has had sensation changes that came and then quickly went back away but this time each day it was the same. Coincidentally, he had a Urologist appointment yesterday and he has been successfully feeling this way daily since Friday. When they did the bladder scan after he urinated in a urinal at the office he only had 13 ml residual left. They decided to take him down to twice a day cathing--once in the morning after he first wakes up and once before he goes to bed. Both times he is to urinate first and the goal is for him to still have less than 75 ml of residual left but hopefully even less like what he had been having. Last night was the first time he did this and afterwards he only had 20-25 ml residual. He has also been able to have bowel movements with bigger pieces of stool coming out. The Urologist saw all of these as signs that his nerves seem to be regenerating. Of course, we don't know to what degree but he seems to be headed in the right direction. He is currently not quite 3 months post-op.

    The Urologist kept him on the FloMax stating that it wasn't actually relaxing the sphincter itself but the tissue around it. He continues to have a little leakage but has since determined that it is only when he coughs or passes gas. They prescribed him Cialis but we're having insurance issues at the moment so he was unable to fill that at this point. They seem to think that he won't need to take that very long though because as his bladder control comes back then so should his erectile function. He has been able to have more of an erection since last Friday too.

  9. #9
    SCI-Nurse

    He is down to cathing once a day--before bed and is staying around 25ml or less residual--which is great. However, his bowels seem to be regressing. He has been having evenings where his stomach cramps, he is doubled over in pain, and he feels nauseous but will only have a lot of belching. All signs that he is backed up. He is trying to go multiple times a day but is only getting small pieces out at a time and constantly feels pressure like he has to go. We are waiting to see a GI specialist who is supposed to have a bowel regimen for him but I didn't know if in the mean time you or anyone else had any advice on what he could do to attempt to provide himself with some relief. The GI is also supposed to order an Anorectal Physiology Test and Rectal Ultrasound to get an assessment of damage. He is currently taking Metamucil 2-3 times a day and trying to eat a high fiber diet. He eats a lot of fruits and vegetables and drinks plenty of water. He is 6'1 and weighs 185 pounds so he is in pretty good overall health. His stomach seems extremely tight and distended to me which isn't normal for him. Thank you in advance for any advice.

  10. #10
    A quick thought. What drugs does he take any opioids? I'm a Cauda Equina with impaired but functional bowel and bladder. If taking opiates (and some other meds) they slow things down and can cause serious constipation.

    Metamucil and fruit and high fiber, with CA and opiates is like putting out a forest fire with a water pistol. I'm surprised he's not on senna-s or bisacodyl. If I miss a day of them I'm screwed and get like he does a couple little tiny ones as I back up more and more. I'm 13 or 14 years into this and still have issues. Have difficulty releasing my urine and retain off and on but no more cath unless I get general anesthesia and opiates for post surgical pain at which point I need to cath and bowel help.

    I can usually get an erection, orgasm is complicated due to nerve damage and likely drugs. SCI Nurse is my personal hero but to me he's doing well, she'd be better able to access his progress. I blew 90% of a disc and completely crushed my cauda equina. Pre emergency surgery had no sphincter control at all, no bladder, right leg was paralyzed. I'm complicated by multiple breaks, T and C, old military injuries. But all things being equal I do quite well except for Central Pain and other pain issues. But it took me a lot longer to get back to where he is.

    I understand his time issues but it would really be good for him to join and read and learn for himself.

    good luck. To both of you.

    Kindly,

    Ket

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