Continuing the Journey

And the Testing Just Goes On and On...

Last Tuesday, Molly had an appointment for her renal ultrasound. This was the second of four ordered tests for the Spina Bifida Clinic (MRI, renal ultrasound, functional urodynamic study, and voiding cystourethrogram). I scheduled them in the order listed because the last two required her bladder to be straight-cath'd and I knew that was going to be BAD!

Tuesday, before her renal ultrasound appointment, Molly and I had a date...
...with a McDonald's cheeseburger...
...and Daddy! Molly was super excited to get Mommy and Daddy all to herself! After lunch, we headed to the hospital for the ultrasound. She was supposed to arrive with a full bladder and, boy, did she ever. She was begging to go potty as soon as we arrived in the waiting room. The ultrasound tech needed to get some of her scan done with her bladder full...
...and Molly was not pleased. In fact, when we laid her on the stretcher, she started wailing! Poor thing, she didn't know what was coming. After she was allowed to empty her bladder...
...she actually started to enjoy herself. Hey, ultrasounds don't exactly hurt, ya know! After the scan was complete, Molly decided to share the snack I had brought...
...with Wa-Wa! Uhhhh, Molly, baby dolls don't typically snack on animal crackers.
But goofy girls do!! Two tests down, two to go.

Yesterday, Molly had the functional urodynamic study (FUDS) and voiding cystourethrogram (VCUG). I was DREADING this day...since both of these tests required her to have her bladder straight-cath'd. Nobody enjoys that, but especially not a child who doesn't speak the language and is scared to death of all things medical. Well, I prepared myself for the worst...and she did amazingly well! She yelled during the straight-cath'g but never moved her legs or tried to interfere at all with the process. She was a dream patient! What a brave little girl.

I haven't gotten any of the urinary testing results yet, except to be told that her kidneys look great and that she leaves a bit of residual urine in her bladder after voiding. (Of course, we all probably have a bit of residual, so that might not be a big deal.)

The week after Molly's MRI, as I chewed on the things I had been told, one thing kept nagging at me...the fact that the Radiologist who gave us the results prepped everything she told us with, "I'm just the Fellow." Just the Fellow...hmmm. Since she was careful to say that, it seemed to me that I should seek a second opinion. So while I was at work last week in the MRI department, I sought out the Attending Radiologist. I apologized for bothering him, but asked if he would mind looking at Molly's scan. He was happy to help.

His reading of Molly's MRI was MUCH more positive than the original read. The differences? The fact that her spine is split at the end is a much better finding than the typical case of diastematomyelia, where the spine splits and then rejoins. He said her spine is the most benign case of diastematomyelia he has ever seen...and that, if she were going to have symptoms from her spinal anatomy, she would have had them already. (And she has no symptoms at all...so, yeah!)

He also thought that the mass/cyst/tumor on her spine is probably neither a mass, a cyst, nor a tumor. He thinks that it is an anterior meningocele. At that portion of her spine, Molly has abnormal vertebral anatomy. So he thinks that when her spine was pushed back inside her body (during the surgery in China), that it went through the abnormal vertebrae and is now pushing inward. Is this a problem? Maybe not, if she never gets symptoms from it. He suggested we just do MRIs every six months and monitor it closely.

He also said that the combination of her completely straight spine (since severe scoliosis is the most common issue suffered in kids with diastematomyelia) and the lack of typical spina bifida changes in her brain make him think she may not even have spina bifida at all. WHAT?!?!?

While this second opinion was totally off the record, I have to admit I'm feeling better already. Gotta admit, I'm actually looking FORWARD to that Spina Bifida Clinic appointment now!