A urology update

Good morning, all.

We had our first annual follow up with urology yesterday and I just thought I would share.   If any of you have insight, please don’t hesitate to share.

Yesterday’s appointment included a urodynamics study and renal ultrasound.  Because we had a VCUG very early on that showed no reflux and we have had no UTIs, there was no reason to do another of that study.  Renal ultrasound was perfect.  Urodynamics showed essentially what we expected.  Zelie has no spasticity (hooray) and can completely empty when she voids (also hooray).  She also has a very weak sphincter muscle (not as hooray) so she isn’t actually able to fill her bladder completely, or even to keep from leaking between voids.  Her bladder only fills about half way and even though that is still a nice low pressure, it is enough to pop that pathway open.  So where a typical bladder her size should be able to hold about 3 oz, she can only hold about half of that.

For now this is not a big deal.  She doesn’t need to be cathed, since she does completely empty.  Her kidneys are perfect, and we know there is no reflux.  She’s still plenty young enough that nothing more than diapers are expected of her and she’s perfectly healthy.  So, over the next several years we will just continue to monitor and do what we are doing.  Easy peasy.

Our urologist did warn us though, that when the time comes that she will need/want to be continent we may have a big challenge.  He said we could, and would, certainly try to go the ditropan/cathing route, but he wanted us to be prepared if that didn’t work.  He said that while things certainly could change, in situations like this they often don’t.  And, if she doesn’t develop a greater ability to retain more urine no amount of ditro/cathing will likely do the trick.   The ditro won’t be enough help and it isn’t practically or medically possible to cath every 15 minutes or so (which is about what it would take if she can only retain 1.5 oz at, say, 5 years old) and even if it was, that wouldn’t really be continent.   If that all proves to be the case, the only other option is surgery.

He wasn’t pressing us for surgery and he wasn’t recommending it for even conversation just now.  He just wanted us to know that it is a real possibility down the line.   That was a bit unexpected, and so I really didn’t formulate any good questions.  I am assuming he meant an augmentation surgery, which is a pretty nasty, scary surgery from what I’ve read.  I’ve also never read of it being done on its own.  Everything I’ve found thus far with SB kids has been about this surgery in conjunction with a MACE etc.  I don’t think that we will need the MACE.  Her bowels are pretty easy and we’ve never had a single issue there.

Of course, we have a lot of time before I need to worry.  I’m not worried.  And I appreciate the “head’s up” from her doc.  It gives me lots of time to think.  Obviously no one wants more surgery.  Hopefully we will find we don’t need it.  But if it becomes our only realistic option for continence, I’m glad to have all this time to research it.  Any input anyone may have on this surgery is much appreciated.

In any case, I thought I would share.  I think that while this is not all that unusual, among our little group here she’s the odd man out on this front right now.  I know some of you are already using ditro, and your bladder issues are of a different nature.  Comparing all our notes is part of what makes this such a helpful place.

All for now.  Hope everyone’s week is off to a good start.

24 comments

  • That disheartening that you will have to consider the possibility of surgery in the future; however, its fortunate that she is so young b/c it seems like solutions are always advancing and even if surgery is needed, hopefully even the surgeries will become more fine tuned and less invasive.
    Remember the lady I spoke with at Shriners about the horseback riding? She said that tightening the sphincter was the aspect the riding helped with the most.

    • You are totally right about the benefit of having a good bit of time. And he didn’t say augmentation surgery, he just said surgery. Maybe just a bladder neck sling. I don’t know and I should have asked, but it caught me off guard.

      I do remember your info on hippotherapy. I think there may even be a place here that does that. I need to check it out, but since she’s only barely 1, I don’t think she’s quite ready for that. Still going to look it up!

  • I echo Camilla – disheartening news, but fortunate that surgery is not imminent. I am certain that easier surgical options or medical treatments will be available when Zelie needs them. Remember that the ETV/CPC was not available even 4 or 5 years ago and look how much that has helped our little ones!!

    And, reason to celebrate now – no cathing, no ditropan (or ditro side effects), no UTIs, healthy kidneys, healthy bladder wall. Yay, yay, yay!!

    I don’t want to belittle, though, that receiving tough news is, well, tough. You are an awesome, supportive, smart mama and Zelie is in the very best hands. Hang in there and know that you are in good company here!

  • Actually, I think they can replace a sphincter. One of the (five) pediatric urologists we saw (who was good, but not good for SB) said to me “if her only problem was her sphincter wasn’t working, I could replace that”

    So, there is something to spend the next couple of years researching … 🙂

  • Wouldn’t the sphincter problem be due to lack of innervation, not sphincter function in and of itself. So replacing it might not fix the problem? I’m hoping I’m wrong, but that is how I understood the problem.

  • I’ve been reading a little about this. And the answer is yes and no, I *think*.

    So yes, that is, I’m sure that is why there is an issue. But the replacement appears to work on its own to a large degree. It has a small fluid filled cuff that is the new sphincter, a pump and a float, like you have in a toilet or an engine. The float is inserted in the bladder, the cuff around the urethra and the pump just under the skin in the pelvis. It is the interaction between the float and the pump that largely drives the function.

    Based on that my impression is that it would allow for some sort of timed bladder management. You certainly don’t gain nerve function, so I don’t think it would allow her to know when she needs to void. But if it allowed her bladder to fully fill, then you could set an alarm on a watch or whatnot. I”m still trying to read but my time is really fragmented just now.

    It would be wonderful it it works for us. It is a very minor-ish, low risk sort of surgery. There is a failure rate on the device, but not a super high one. And the success rate of the procedure is very high 80%+ with the “fail” being that a need to cath. Either way it sounds like a win to me.

  • So far these have been the most interesting links. It does seem that this would only be an option if everything is functioning normally EXCEPT the sphincter. So, clearly not a one size fits all option. Still, very interesting reading.

    http://ngbladder.org/treatments/4-2-vi.asp

    http://my.clevelandclinic.org/health/diseases_conditions/hic-neurogenic-bladder

    Tspar, lots of use for this one in spinal injury patients where things were functioning fine and just this one aspect is lost, but also comes up with myelodysplasia a lot. So it doesn’t appear that lack of innervation is a factor.

    Man, then things I’m learning about biology are amazing! And not what I ever expected to do once I was out of school…

  • Very interesting.

    So if the patient is actually activating the pump manually, then what is the need for the float, I wonder?

    When you first explained it, I thought you meant that the float controls the pump. And I thought, well that sounds scary. A little miscalculation on input or timing and you’ve got an involuntary “flush”.

    But then the second link you sent made it sound like the patient controls the pump. So what would be the purpose of the float, I wonder? Does it start beeping? I’m kidding. Can you imagine? What’s that beeping? Oh, that’s just my bladder float indicating I’m full.

    Seriously though. If there was some way for the float to notify the patient that the bladder is full. Then the patient manually activates the pump. Bingo! That would be AMAZING!

  • Totally amazing, compared to what happens naturally to my DD now (if she’s not on Ditropan). Automatic flushes randomly, with constant dribbling in between.
    Can you imagine a high schooler sitting in class beeping? LOLOLOLOL!

  • I was thinking along those lines myself. I was thinking specifically about being on a date. Ha!

  • You girls crack me up!!

    The pump has to be manually activated, and then you have 2-5 minutes before the cuff re-inflates. So in a person who could feel the urge to void, they could simply activate the pump when they felt the need and got themselves to the bathroom. In our case, we would have to use a timed approach, just like many other SB kids, where she learned to go every X number of hours, activate the pump to release the cuff and void and then carry on as usual.

    The float is there to help regulate the pressure on the cuff when it is not being deflated for voiding. I understand this to mean that pressure increases in response to the amount of urine in the bladder. No need to have it clamped extra tight under lighter pressure of fluid.

    Of course, I don’t know if this will be a suitable/viable option for us or not. I still find it so fascinating!!

  • MrsK,

    I wrote a question on SB kids but in summary it looks like our girls may be in the same boat. I did mention to our nurse the idea of an artificial sphincter and her answer was, “oh, no, no, no” and proceeded to tell me it was really popular in the past but not anymore b/c surgeons were finding that it was eroding into the skin. Of course, I would much rather have that surgery than the bladder sling/mitroffanoff combo. When I asked her about just doing the bladder sling/no mitro and she said that surgeons didn’t like to cath at the insertion sight and found that the surgery had to be redone b/c it would stretch out. All that not to discourage you at all but to say that if you hear of anything new/meet with urology, I would love to hear about it since our girls may be facing the same obstacles. I did read about tibial electrostimulation and tried it today (we already have an estim machine so that made it easier). She stayed drier right afterwards but I don’t know if it was a fluke. I also plan to ride our horse more but three hours a week in 100 degree weather just seems daunting. I am also doing Japanese acupuncture on her bladder. I’ll keep you updated it I learn anything/find something that works.

    If anyone else has anything to add, please feel free. 🙂

  • Hi there!

    I’m really glad to hear this, even if it isn’t exactly what one would hope to hear. We actually have clinic in Boston in Feb/March. They have the most advanced lab and facilitates for peds urology on the planet and this will be a conversation we will have with them there. Not that I doubt what you’re saying at all, just my past experience is they are on the forefront of what is new and working, they have LOADS of SB kids etc. So even if the response is the same, I’ll be very eager to hear if they suggest something other or more/different than the surgery. I will DEFINITELY keep you posted.

  • Hi Ladies,

    I’m posting this here and on the Triphala post. I wrote Dr. Yarnell today to tell him about Pooka’s dramatic bowel improvement after taking the Triphala herbal blend for 2 months. My basic question was this:

    Can herbs that are said to “tone the bowel” somehow strengthen the bowel itself apart from improving the innervation? And if so, could there be a product that would do the same thing for the bladder – “tone the bladder.”

    Or if not, how would he explain the improvement?

    I will let you know what he says.

    Tina

  • Well, I’m certainly interested to hear what he says. I looked up the ingredients in Cleanse More and all of those are meant to help the bladder as well so hopeful its helping Pooka’s bladder. I *think* that C’s problem in the tone of her bladder neck/sphincter so its more of a muscle problem. But, maybe a supplement could help tone of the area?? I am looking into the pelvic floor strengthening.

  • You’re kidding? That’s amazing! What website did you use to look up the herbs? I found a lot of bladder tonics, but none of them listed the cleanse more ingredients. I saw a lot corn silk (zea mays) and gota kola (centella) though.

    • Gosh, I can’t remember. I just googled the ingredients alongside with the word bladder to make sure that nothing conflicted with her bladder meds and I read that they actually helped the bladder. Side note, you are not actually supposed to take Triphala with bladder meds. I still have C on it cause as far as I have read its ok on the dosage of Enablex she is on but may have to take her off it if we up the Enablex.

  • Oh, and C can stay dry for one hour sometimes two or I am hopeful that maybe we can make some progress and avoid surgery. Its just that the kindergarten coming in a year is looming in my mind.

  • I wanted to post a quick update here.

    For a variety of reasons, we have bumped up our Boston timeline. We will actually be there the first week in December. This is absolutely on my list and I’ll be sure to let you know what I find.

    Tspar, did you ever get a response from Dr. Yarnell? I have had zero success in getting Z to take this, no matter how I disguise it. But someday she will be able to swallow pills and then we may be able to revisit.

  • We switched from Enablex to Toviaz and her ability to stay dry increased dramatically. I think we will need to up the dosage from 1 to 2 Toviaz to completely get into underwear (somedays now she could wear them, others not) but at this point I think we’ll be able to avoid surgery for awhile. I would still definitely like to hear what you find out at your appt, MrsK. Since many “typical” women need the bladder neck surgery as they age and I assume that would happen much more quickly in our case so I want to be aware of the options out there.

    I don’t blame Z about the Triphala–it does taste terrible! 🙂 When I was dividing up the capsules, C requested that I put it back into another capsule so she could swallow it. 🙂 I took C off Triphala all together now. I really wish she could be on it but Toviaz (and most if not all bladder meds) is metabolized by CYP3A4 and Triphala inhibits it.

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