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.