Sigh. Last week, Neurologist called with the MRI report and seemed convinced that the excess spinal fluid was the cause of at least some of Lu’s issues if not all. Unfortunately, after he spoke with Neurosurgeon, he rescinded that answer.
Our Neurosurgeon visit today offered no further illumination; the pineal gland cysts and the cervical sphyrinx are red herrings. No relationship to her symptoms. Idiopathic. We still have no diagnosis or prognosis or treatment plan – and when I pressed him, this man looked me in the eye and said “Hopefully it will just go away.”
This. Is. Not. Good. Enough. There are not words to express HOW not good enough this is. And everyone wants me to be so ecstatic that they have ruled out stuff. (#NotATumor) But at this point, that feels like going to a restaurant and being happy that you didn’t get food poisoning even though the meal was not very good. I am glad it is nothing big. But until they tell me what it is, maybe it *is* something significant that they just haven’t found yet. It’s not nothing! And doing nothing about it is not satisfactory. I had a moment where I teetered right at the very edge. I can feel hysteria creeping in.
We are exhausted. We have been to more than half a dozen doctors – many necessitating a trip into the city and battling traffic and parking and balancing scheduling and we have gotten nowhere, it feels like. We will see Ortho 3/18 (at least her leg is healing!), Urologist #2 3/28, Neuro 4/9, AND NeuroOpthalmologist first week in April. I can’t keep going like this, especially with no solid plan or end in sight. I have work and Adam has work, and poor Cole is hanging by a thread. Lu is missing school and falling behind, and this cannot continue.
“Hopefully it will just go away.” If she wakes up tomorrow back to normal, I will keep you posted.