Waiting for Test Results….
We always seem to be waiting. Waiting to see the doctor, waiting for the next procedure, waiting for test results. I feel like I’m waiting my life away.
On July 10th, Lizzie had an MRI of the lumbar region of her spine. This test was done to rule out any underlying neurologic problems. Her unexplained recurrent reflux after both surgery and deflux injection, coupled with her grossly enlarged bladder, leads us to believe that she may have an underlying condition that is causing her reflux. This is where it gets incredibly complicated.
We have gone by the book. Antibiotics, Surgery, Testing, More surgery, Deflux, Vesicostomy…. we’ve done it all, and if anything, her reflux is worse. Her urodynamics test showed normal pressure, almost complete voiding, and normal contraction. Not the normal signs of a neurogenic bladder. So we were left with “we don’t know”. That just wasn’t good enough for me. I researched and studied, and then researched some more. I found three articles which stated that a failed reimplant warranted further neurologic testing. We had done the first step (urodynamics), but in my mind it was time to take the next step and rule out neurological problems altogether and have an MRI. Our pediatric urologist agreed and we scheduled the MRI.
The reason for doing the MRI is to rule out neurologic conditions that could be causing her bladder dysfunction and VUR. The doctor did not tell me specifically what they were looking for (or much about the MRI itself), so I headed to the nearest search engine and tried to educate myself. I have found there to be a fine line with research, and it is sometimes difficult to see. I feel like I have to know what and why they are performing tests. I also need to know what they are looking for. I get 15 minutes every few months with a specialist that has complete control over my daughter’s care. I WILL BE PREPARED for whatever he has to say. I need to know what he is saying and what it means so that I can ask the right questions. On the other hand, according to uro, the odds are very slim that it is neurologic, so I don’t want to spend to much time worrying and reading about something that may not be related. It’s a hard balance.
I’m not sure how I’m supposed to feel, much less how I really do feel. The neurologic condition that we could be facing is called occult spinal dysraphism. What this basically means is that Lizzie could have some sort of spinal defect that has not been detected. These conditions include occult spina bifida, tethered spinal cord, lesions on the spinal cord, and other rare anomalies. One of the symptoms she shows are two small dimples at the base of her spine, although I believe that these are low enough to not be an absolute indicator of neurologic problems (coccygeal vs dermal). Her symptoms also include massive reflux, failed reimplant, enlarged bladder, and voiding dysfunction.
On the other hand there are strong arguments against neurologic problems. For instance her urodynamics tests did not show pressure problems, which would generally be seen in a neurogenic bladder. She also has a duplex collecting system. Having 4 ureters complicates things from any angle. A set of complete duplicated ureters has been shown to increase severity of VUR, as well as other complications, although I have been unable to come up with concrete stats for that. Another positive for us is that she shows no damage to the function of her legs or feet which is often seen in with neurologic problems.
So here we are. Wondering what in the world is wrong with our baby. I can’t possibly hope for this to be the answer. I don’t want my baby to go through numerous surgeries and follow up her whole life. And then I begin to realize. If I’m totally honest with myself, I know that much of her life will be filled with doctors and surgery regardless of the diagnosis. What a hard thing to finally realize. We have already been discussing four different surgeries, and we don’t even have an answer. We know we will have to reverse the vesicostomy, so there is one. Tapering of two of the ureters, removal of ureters are two more. Another is a bladder reduction, which seems to be fairly uncommon.
There are times when I think, at least if this is it, we’ve caught it early. She has no nerve damage to her legs. She may be incontinent, although some research has given us hope, even in that respect. She would most likely need at least one other surgery, but we could make it stop. It wouldn’t be ideal, but we would know what to do. There wouldn’t be this constant unknown. This constant feeling of not ever having enough information. At least with a diagnosis, you know what you are in for. You know what the future may hold, and you can plan for it.
Instead I am waiting. Waiting to know what the future holds. If it is positive, we head for a neurologist and neurosurgeon. We make a new plan and implement it. I’m not ready for that yet. If it’s negative, we see a nephrologist, run some new tests, maybe start genetic testing, and hope a better, easier solution comes along. In the meantime we wait to see which doctor and which tests we will be waiting on next.
