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Urinary retention and cathing after tethered cord surgery

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  • Urinary retention and cathing after tethered cord surgery

    Hello! It's been a while since I have posted. My daughter was born back in May with myelocystocele. She's doing fantastic, no shunt and her muscle test and leg function are testing in normal ranges. EI has been out to evaluate her and she currently has no deficiencies. These are all great things! We are very hopeful for her future.

    She had her closure surgery at 3 weeks old due to the fact that her bladder function declined rapidly. Her neurosurgeon and urologist agreed that this was her "neurological change" due to the tethered cord. Surgery went well and bladder function improved in the hospital, but she had a lumbar drain removed and after that her bladder function went downhill again.

    It has been 2.5 months since surgery and her bladder is still all over the place. We cath her about 7 times a day right now! It's really hard, but we want to protect her. I guess I'm looking for advice, support, encouragement, anecdotes, etc... to help me here.

    Here is a general schedule:
    Cath between 6 and 7 (highest volume usually), if it's above 60 ml we cath again 2 hours later, if below 60 then 3, so usually around 8-10 for the second cath, between 10 and 1 for the 3rd, between 1 and 4 for the 4th, between 4 and 7 for the 5th, between 7 and 10 for the 6th, usually somewhere around 10 we cath and go to bed for the night, then wake her to cath between 2 and 3 am for the 7th cath.

    The 2/3 am cath is typically low now (usually 30ml or less), so I'm wondering if maybe we can stop waking her and let her wake on her own to eat/cath?

    Her urologist wants wait and see right now before we make any changes She said its possible we'll see improvement over the next few months. She has a full uro work up is October (surgery was in June) so I'm guessing we'll learn more then. Based on the frequency of cathing, I'm not holding out much hope that her bladder is going to recover. I've made peace with it, but I'm still feel in the dark about what to expect

    Again, any info you want to share would be greatly appreciated.


  • #2
    From what I've learned about detethering surgery it can take several months or even as long as a year for the cord to settle down. Just hang in there!
    Sumus semper in excretum sed alta variat!


    • #3
      Yikes! I heard that too, but based on how much cathing we do it feels like it's never going to end.

      Another thing, my husband and I noticed that when we cath her she tends to push, like she's trying to push out the extra urine. I plan to ask her urologist about this, but could this indicate that she has some sensation? I was under the impression that usually a neurogenic bladder meant there isn't much sensation.


      • #4
        My daughter has some sensation, she can feel full, feel leaking too. My daughter had detethering that caused her bladder to become spastic. We were having great amount of urine before, but after surgery holding much less urine. Now five years after and we have used ditropan instillations, and done Botox injections to her bladder, last injections was two years ago. She starting to hold larger amount and no meds, no Botox. Kids are amazing, ever changing. Your daughter may feel the catheter, and have the urge to push it back out.


        • #5
          Thank you so much for your input! That's exactly what i was thinking. It doesn't seem to hurt her or bother her, but she does seem to realize it is there and pushes. We do push on her bladder a bit, but most of the time she does the work for us.

          She just had urodynamics testing done and the preliminary results came up. We meet with her urologist soon to discuss them so I'm waiting til then to talk to her and ask questions. Based on what I can tell it looks ok. Just not sure why she's still retaining so much.

          How is your daughter doing?


          • #6
            Just a little update here. My daughter's urologist decided to put her on ditropan. We started that at the beginning of Nov.

            I'll be honest, I was a little confused by her urologist's reasoning. Her bladder and kidney ultrasound looked great overall. They noted some slight thickening of her bladder wall. Her urologist said that her urodynamics was "incimclusive." But she thinks ditropan was the next step to allow her bladder to stretch and grow.

            I've had so many thoughts about this swirling around in my head for months. Maybe you guys with more experience can give me some insight. Ok, here goes:

            1. Is ditropan/medication going to be a given for the rest of her life or do kids sometimes need meds for a short time only?

            2. Is there still a chance her bladder could recover from surgery? It's been about 6 months now? Will we even know if her bladder can work properly if she's on ditropan? I thought her caths were decreasing before ditropan (we catch in a cup and record).

            3. She's having urodynamics again in a few weeks. What are they looking for?

            4. What is the likelihood that she'll need more bladder interventions and how invasive do they get? I'll be honest, I've been afraid to Google this.

            5. Is there anything else we can be doing to help her bladder? I'm not going to lie, I feel a total disconnect with her urologist, which for my daughter's sake, I need to work on. We see her urologist again a couple weeks after urodynamics and I want to create a list of good questions to ask. Any suggestions would be helpful.

            If I don't feel comfortable with her after this next appointment then I'm going to seek out a second opinion.


            • #7

              I am not able to properly answer any of questions, sorry.

              Actually my little girl has a similar condition in terms of neurogenic bladder, caused by her lipomyelomeningocele (surgery was performed at 50 days of age, so we cannot know whether the condition was pre-existent or not).
              She's 3.5 yr old, she can control everything quite well; the only thing is that she cannot empty her bladder completely.

              We have been aware of this condition for some 5 months now (basically, after potty training was completed), we are doing caths 3 times per day, the average per cath is 47 ml.
              She will have the first urodynamics done at the end of this month.
              We have no idea about what will happen in the future, only the hope (as per urologyst's indication) that when she grows up her abdominal muscles may partially make up for it; but I, too, have not had yet the "courage" to search for deeper information about the likelihood of this happening.

              However, I do want to comment on your last remark.
              Do trust her urologyst, unless you have decisive evidence that he/she is not competent. Look for such evidence, look around for grounded opinions on this person. But until then, try to work on your connection with him/her and do not dismiss his/her words only based on your personal perception/feeling.
              I am not saying that a parent's perception is worthless, on the contrary it is very relevent; I am only urging to have your perception validated asap.

              Daughter Aurelia (born June 17th, 2014), lipomyelomeningocele S3/4. Had surgery on her 50th day of life. Recovering fine.