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Conus injury! May 12th

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  • Conus injury! May 12th

    i am a 59 yo male and i fell off a ladder and burst fractured L-1! I had a fusion of L-1, L-2 and the Sacral vertabrae below L-1! The 1 month sequla is that my legs are intact but have a non functioning or incontinent bowel and a bladder that needs to be self cathed! My question is if there is a possibility of recovery of a functioning b and b! The only subjective improvement in the saddle numbness is i have feeling in more dermatones! I am extremely depressed and feel alone because all I don't feel whole! People tell me because I have full leg strength that I should feel blessed! I guess i am still shell shocked! Any feedback would be appreciated! Thank you!

  • #2
    It is still very very early after your injury. Yes, some people have improvement in bowel and bladder over time (months to years). It helps to have a very good urologist with experience in Spinal cord injury (SCI), so try to get a referral. Are you near a rehab hospital with experience in SCI? There are also some physical therapy programs that address B&B, but it can be hard to find a therapist experienced with this.

    Yeah, the bowel and bladder stuff really stinks, and is the worse part of SCI for many on this board.

    I would also speak with your physiatrist or neurologist or urologist about the medicine Ampyra. It is FDA approved right now for people with multiple sclerosis, but some on this board take it for SCI (including my Dad). My father finds that it helps his bowels/bladder a little. The compounded medicine 4-Aminopyridone is also very similar and can be purchased out of pocket if your insurance refuses to cover the Ampyra. I would start with that, and if it seems to help, then try to fight for the Ampyra.

    One day at a time.

    I understand the little comfort that it gives when people say "you are lucky you can walk....". They obviously don't understand.


    • #3
      Thank you so very much for your kind and thoughtful reply! Did your dad have an injury similar to mine? One day at a time is right, that is all we can know! I need to go back to work soon and i need to plan my times to eat and the foods to eat so i can predict my peristalsis and so i can get a consistent stool formation! With that med has your dad been able to urinate w/o a catheter at all? Again, your feedback was much appreciated! One other question; Has your dad ever tried transcutaneous tibial nerve stimulation? You have been so kind to respond!


      • #4
        My father's injury was just a little higher then yours (T11-T12) so he has weakness and numbness of the legs, and a lot of neuropathic pain in his feet/butt/back of legs. His feet are totally paralyzed and his butt muscles are super weak, and he walks with braces on both legs and forearm crutches. He does not urinate on his own, but he is "lucky" that he almost never leaks or has any accidents. He does have some sensation with bowel/bladder, which helps.

        So in many ways, you are quite lucky... sorry, I know that doesn't help to hear....

        I think the stimulation of the tibial nerve is for foot drop? Do you have that? That does help some people who have weakness of the foot because of injury at the level of the spinal cord, but it doesn't help my Dad (and may not help you if you have foot drop) because often people with very low level injuries (conus/cauda) actually injure the nerves that leave the spinal cord. You need that nerve to be uninjured/intact for the stimulator to work. But you could try it because it is non-invasive and you'll know immediately if it works or not. You could also try it again in 8-12 months, as some nerves will repair and regrow over time.

        Or are you talking about the stimulators that are for bowel/bladder function, that are implanted in the sacral area? These are controversial for SCI and haven't really shown any benefit.

        By the way, you are not alone for feeling depressed about this and I strongly urge you to talk with your doctor about getting on an anti-depressant and/or talk therapy or support group. It is so important and will make a big difference in your quality of life. It always bothered me that there wasn't better treatment for depression when my Dad was injured. But now his rehab hospital has totally changed, and people are aggressively treated for depression after their injury.

        Good for you for getting back to work soon. You can do it. Yes, it will suck to have to get on a regular schedule of drinking/cathing and consistent eating (especially fiber) and drinking for optimize your stool. But most people learn how to manage it pretty well. A schedule/routine can help immensely.

        And who knows where you'll be in 6-12 months. Give it time.


        • #5
          Rich, I'm sorry to hear about your injury. Yes, it's a shock when something like that happens and changes your life in the blink of an eye. I'm injured at L1 and L5 and have been recovering for three years. In my case, b&b started coming back after three months. Then, it was lots of focus and exercising to improve from there. It has been so recent for you that I'm sure you haven't had a chance to experience the slow healing process of SCI. I don't tell you this to discourage you. It is true, though and understanding that can help relieve some anxiety. You will need to be patient and let nature run its course. Work hard to stay as fit as possible, get physical therapy if you are able. Read through this site and learn all you can. The members here have been very helpful and encouraging.

          I hope that the healing process goes well for you and that you go on to climb many more ladders....well, maybe not ladders!


          • #6
            In reading the extent of your Dad's debility from his injury I do consider myself fortunate because I am walking fine! My lower back is getting stronger but still feels stiff with too much bending!The transcutaneous posterior nerve stimulation that i have tried is just two electrode pads attached on the inside portion of my right leg near the ankle bone. That particular nerve runs up to the sacral plexus. It is suppose to help with neurogenic bladder and incontinent bowel. Mine due to loss of anal sphincter sensation! It is very non-invasive and very easy to do if you have something like a TENS machine which are cheap on Amazon! This procedure can also be done percutaneous which means one of the electrodes is connected to a 34 guage needle and penetrates the epidermis to get close to but not touch the posterior tibial nerve. I do not have foot drop! I am looking for the light at the end of the tunnel in regards to b&b! I am going to find out about getting some of that compounded med that you mentioned that helps offset the demylination process!
            Your responses have been a real uplift for me because you help me to not feel alone! Thank you so much! i know the process is slow! i am taking 1 day at a time!


            • #7
              Thank you for your response! As i stated in another response; I am just looking for the light at the end of the tunnel! I would be curious to know what you felt at first to give you indication that you were getting return control of b&b. It sounds as if your legs were not affected like mine! Again your response was very much appreciated and was quite encouraging!


              • #8
                Since i purchased the electrical stimulation unit many years ago i am not out any $ other than buying new electrode pads which are cheap! I see your and the doctor's point! And this is why i asked the question, so i am very grateful for your response! Since i already have a unit and am only going transcutaneous as opposed to percutaneous I am not out anything except my time so i can try it for 12 weeks w/o harming myself! I will do anything to try to begin to see the light at the end of the tunnel asap if i know it isnt counterproductive! Thank you again for your kind and informative response! One day at a time but hoping that someday will not need a catheter and depends briefs!


                • #9
                  Rich, I've had a theory about SCI recovery that helped me. When a person is injured and muscle atrophy sets in, it's difficult to know when you have return of function. I systematically try things out. Toes don't move? Try to move the toes once a week. That's how I discovered that b&b was returning...I just gave it a whirl once in a while. Trying motions or testing yourself for sensation will give you the best chance to start working your returns when they come. None of us know what will be regained and that's part of the frustration of SCI . The idea is to make the most of what comes back to you, learn to adapt for things that are missing and put it all together and do the best you can with life.

                  If you have not done so already, start a recovery journal. Record your therapy, workouts, improvements, frustrations. You can learn a lot by being a student of your own recovery. Plan your days to give yourself a focus.

                  Right now, the road ahead probably seems very long. Maybe you can't see the light at the end of the tunnel or even know how far the tunnel goes. Your recovery records can help you look back on the road you have traveled and acknowledge the improvements you have made. They can help you sort out your thoughts and put some order to what you have to do. Recovery is a as much, or more, of a mind game as it is a physical one.

                  Give yourself time and rest, as well as recovery work.


                  • #10
                    I feel your pain richt54, have a very similar issue myself, and I am only 32.So you are definitely not alone. My condition has not been diagnosed yet; however, I have almost identical symptoms. Bowel incontinence full blown, I cannot even go out in public, for fear of my bowel releasing again in public view already has happened to me 3 times.So I feel where you are coming from in feeling alone, my bladder has overflow incontinence, but I am mostly retaining a lot between 500-800 ml is a normal day for me, which can be very painful. I have to self cath as well and it sucks the big one, sorry for language but I am sure you understand. Both of my legs barely function properly much like it sounds in your case, usually feels like Iam dragging 100 lbs weights strapped to my feet. And yes the dreaded saddle anesthesia too, with severe back pain. So I know where you are coming from, sorry but I do not really have any answers for you, but I have been dealing with these symptoms for 6 months with no clear answer to them myself. Just wanted to let you know you are not alone, I feel your pain all too similarly, hopefully you are being treated well by the docs you are with. And hope your symptoms improve as well, as it is a lonely road to walk, and it is difficult to talk to others about.


                    • #11
                      Hello Anthony,
                      I am so sorry to hear what you are dealing with. Did you have an accident that caused your condition! My legs were spared as my walking ability was not comprimised! In fact I can kneel on one knee with each leg and get up unaided! Though my right leg is weaker than my left. I think i lost a lot of muscle mass from the corticosteroids that were pumped into my back initially! Whey protein and creatine helps me to regain leg muscle and strength! I try to keep my bladder below 400 ml when i self cath and cath slowly with enough sterile lube! I try to keep my stool slightly constipative so if i am out clean up is easier! I take lots of anti inflammatory supplements and get between 4500 to 6500 mg of omega 3 fats to help with remylenation! I am 5 1/2 weeks post injury and try to remain positive! Sometimes it is very difficult! BTW Trader Joes sells cranberry juice at a good price. I drink it to help to prevent UTI's! It is hard to not feel alone sometimes when every one around you is normal!
                      Kind of shotgunish in my response! i pray that each of us will recover enough to feel functional in the B and B. Thanks for your kind message!