09/10/2026
So sorry it’s taken this long to update! It’s been so busy with appointments and school starting…
At Ava‘s neurology appointment, we were directed to complete several other follow up appointments before neurosurgery would make their decision on what to do about her lumbar spine. She was instructed to complete an urology appointment, a gait analysis, and follow up with ortho. Before returning to see neurosurgery again.
Ava spent a day at the gait lab and had a motion analysis completed to get a better understanding of how she moves and how much energy she expends doing basic tasks. She thought this was pretty darn cool 😎 they covered her in stickers that light up and can track her movement. Just like the professional athletes do! That one report takes quite a while to compile and we are still waiting to go over the results.
We saw ortho and discussed her spinal cord. This was actually a very tough appointment. We discussed her cervical vertebrae which we found out our abnormally small and some bones in her neck are actually fused together, which explains her limited range of motion.
We also discussed her thoracic imaging, specifically T11-T12 where we are able to see that Ava’s disk does not look normal and the bone around that disc is very irregular and broken down.  This is something you can see as people age and joints wear and tear but definitely not something you would normally see in a 10-year-old. As I was asking about this, I mentioned the fact that I had expected to find abnormalities on her lumbar x-ray because we already knew about her tethered cord, but I had not expected any of the other abnormal results. He asked why I had expected abnormal on one and not the other, and I let him know that we had never specifically looked at cervical or thoracic spine previously because we had no concerns. He seemed surprised (as I was 8 years ago when we learned about Ava’s tethered spinal cord, and I had requested imaging of her entire spine at that time but they felt it was excessive. This just firmly cements in my head that when you have a gut feeling, you need to push.) And reassured me that he was not concerned as he was thinking that disc had never completely formed in that location (just like her cervical spine had not formed correctly.) Ava DOES have VACTRL, so we know that she is at risk of issues with her spine. And the doctor was reassuring that if that was the case, there would be no reason to worry.
As I was thinking about all this, I realized we may not have another full spinal MRI, but we sure as heck have a ton of imaging of that area. And I have always looked at every image even if I didn’t know what I was looking at just to get an idea. And I was very confident that I had never, in 10 years, noticed that disc breakdown in her thoracic spine.  after I said this, we reviewed a bunch of random imaging from over the years and we were both in agreement by the end of looking at pictures, that Ava’s T11-T12 was NOT always like that.  So now he is thinking it is more likely Scheuermann's Kyphosis. (Structural Kyphosis - such as Scheuermann's - is a rigid deformity where the bones themselves are misshapen, meaning the patient cannot straighten their spine simply by trying to stand up straight.) she’s not officially received this diagnosis as three discs in a row need to be affected and currently we only see one. Planning to restart physical therapy (again) and do Imogene again in six months to check the progress of that area…..
Now, we have an urology appointment at the end of next week and then back to see neurosurgery!
