Hello and Welcome Jamie's Mom. I am sorry your daughter is going through so much.

I can only imagine how frustrating this is. Is the unwillingness to take it out based on the risk of paralysis? I could see not wanting to do it then but perhaps the battery unit could still be taken out.

Is her current doctor aware of the difficulty getting further care? Did they have no recommendation at all?

I did best getting my surgical and treatment needs met by going to Houston, 3 hours from my home, where specialists in large academic centers were accustomed to challenging cases and not afraid of me. It was a pain, literally, but completely worth it. They had answers and help for me when no one else did. Traveling for care can make a difference.

Don't give up, there may be help yet. Did UW neurosurgery get a referral for consult? or could you just make the appointment with them? If they will not treat her, Mayo might be a somewhat nearby consideration.

Hang in there Mom. I hope your daughter finds relief and healing soon,