The girl saw the neurosurgeon today. We had lots of questions when we arrived, and we left with more questions. Of course we were a bit concerned that the cord re-tethered. We did learn that the cord is fine! No indication whatsoever that the cord is the problem.
There were no explanations for the falls and incontinence. Because the girl is weaker on one side, the doctor ordered a brain MRI. We will do that next week. It’s without sedation…should be easy. So, this is step one in the plan.
Step two is to follow up with the urologist and stay on new medicine for the bladder.
Step three was unexpected.
The very thorough radiologist looked at everything and noted in the report that the girl has “enlarged lymph nodes particularly in the suprahyoid internal jugular chain….bilateral tonsillar enlargement and partially visualized adenoid hypertrophy.”
I looked up “hypertrophy” and it means enlarged. Hmmm…the girl had her adenoids removed 2 years ago. I guess they grew back?
So, step three is that the neurosurgeon will send the MRI to an ENT at Children’s so we can get an opinion about infection or other things that could cause the swelling. Infection can make a girl fatigue and fall…but probably doesn’t explain the incontinence.
That’s the plan! At least we have one!
Thanks for the update. Like you said, at least you have a plan here. I’m so sorry there are still more questions though. Prayers for peace as you continue this journey. She is a trooper.
We are still on our journey as well…, saw the ped. urologist today and Ivy’s kidneys that were different sizes at birth are closer to the same size today so that is good news. We don’t have to see him for 4 months now. We are off to the follow up Wed. with her surgeon.