Then she'll have a bad day, inevitably again, and I'll take a deep breath. We're still on the right path. I'm not putting her through major back surgery for nothing. It will be worth it. It IS necessary.
Today was one of those. A bad day after some good ones. The bladder spasms is causing not only accidents, but temper tantrums. I'm starting to get a pattern here. I'm not excusing her or condoning her behaviour. I still believe that some (if not most) of her tantrums are from a behavioural point of view, and I'm trying my best to watch her closely to see if it's caused by the bladder, or behaviour. Today, the bladder was at fault, most of the times.
We've been discussing bladders on the one forum I chat on, and I thought maybe you would be interested to know as well, what the urologist told us about Boeboe's bladder. It's all very technical, and I'm sure I'm getting some things wrong or mixed up. So please don't take this as medical advice, this is just how I understood the explanations given to me by several of Boeboe's specialists. And, this is unique to Boeboe. Not all tethered cord bladders works the same. It really is a highly individualised thing, it seems.
Boeboe should hold about 250ml volume in her bladder, for her age. Bladders that doesn't hold enough, or too much, is usually severe cause of concern for a urologist. Boeboe had what is called a Urodynamic study, a VCUG, 2 cystoscopies and several sonars, and this is the information given to us about her bladder.
When a baby is born, the nerves in the sacral level of your back (around your buttocks) fire off impulses to the bladder to contract. These contractions expell the urine. A baby does not have control over this process. But around age 1-2, the brain and spinal cord starts to mature and links up. The brain are then learning to control these contractions by inhibiting the nerves from firing off. The brain sends a signal to the nerve to inhibit it. The bladder are then in a state of rest, and it can be filled with urine. Once it reaches a certain point, it lets the brain know (via the nerves and spinal cord) that it's full. The brain then waits until the person is in a comfortable place (preferably the bathroom, of course!). It then stop the inhibiting signal that was continuously send to the sacral nerves. Thus, allowing the nerves to fire off their impulses to the bladder to contract, expelling urine.
Think of a bladder as a small, fluid-filled balloon. When the bladder contracts, it does it gently. Like pushing your fingers into the balloon, about a cm or so. That's all that's needed to expell the urine. Nothing hasty, nothing painful.
Unfortunately not so for my daughter. When her nerves fire off a contraction/spasm, it's done swiftly and harshly. Like pushing the balloon so severely that your fingers nearly touch each other through the balloon. This is painful. And worst is, this does not only happen when she is safe and sound in a bathroom. The signal travelling from the brain down the spinal cord to inhibited the nerves firing off, gets interrupted. So the sacral nerves never gets the message that it must stop firing contractions to the bladder. She has what is called an uninhibited neurogenic bladder.
Thus, her bladder nearly constantly contracts, or spasms. When she had her urodynamic test, she got the first extremely severe spasm when there was only 30ml of fluid in the bladder. She had continuous severe, painful spasms, until at 50ml she couldn't take it any longer. (That's about a fifth of what she should've hold in her bladder.) The spasms measured at about 110cm when it should've been around 20-40 at the very most. Here's the results of her urodynamic study. It's a bit difficult to make out, but the originals was taken by the neurosurgeon, so I only have a scanned version at the moment to share.
Another worry with her bladder is that it's thick-walled. A bladder is supposed to be a certain thickness. But it's a muscle. The harder you put it to work, the thicker it gets. So, Boeboe's bladder has these extreme spasms every so often throughout the day, but she tries to keep control (try to keep from having an accident) by closing the sphincter. Now imagine that you're pressing that balloon severely, while holding the opening closed. That's what her bladder does, so it excersize the bladder muscle, resulting in a thick wall. A bad sign. She also has trabeculi (little knobs) all over the bladder on the inside. And diverticuli, which is like little nooks and crannies, another bad sign.
The problem with a bladder that is closed off at the bottom during such severe spasms, is where will the urine go? The only place left when downwards is closed off, is upwards! That means, back into the kidneys. This is a very very bad situation. It's called urinary reflux, and it will, eventually lead to kidney damage. And damaged kidneys stop working. And you all know that even though the human body has 2 of the things, it unfortunately cannot function without at least one working kidney. So better take care of those vital organs while you still can.
Fortunately, all Boeboe's tests showed that she does NOT currently have urinary reflux. Because, she has accidents. She tries to control it, but fortunately fails. Better the urine out (even at uncomfortable times!) than up into the kidneys. The urologist believes that Boeboe has about another 3 years, if we don't get rid of her bladder spasms, until she's going to gain sufficient control to have less accidents. But, this would lead to urinary reflux and kidney damage at the end of the day.
So this is why we're doing what we're doing. Going for the neurosurgery (back operation). We've tried the medication route (meds that supposedly stops the bladder from contracting so severely). Unfortunately, it failed. Accordingly to the urologist, because her spasms are just too severe. :( We also tried the botox route. We had more success, and maybe with some dossage modifications, we'll have more success. But, this isn't a permanent solution. At best, we're looking at 6-18 months of less spasms. It doesn't fix the cause, or stop progression. I just paralysis the bladder somewhat. We even tried a combination of botox and medication. Alas, the side effects of the medication wasn't worth the tiny, tiny bit of gain we got.
Ultimately, we're doing the back operation to try and keep her symptoms from worsening. Ultimately, to keep her kidneys healthy. I'm hoping that even if the operation may not be a 100% success for her bladder, that it will at least allow SOME signals of the brain to reach the damaged nerves, to inhibit those contractions. To stop firing off the spasms.
And then, maybe, we can really celebrate the good days, and they'll become more regularly, and the bad days will become less and less.
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