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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.

    Thanks!

  • #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!
    Roger
    Sumus semper in excretum sed alta variat!

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    • #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.

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      • #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.

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        • #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?

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