Okay, so the MRI does not show any compression at the juncture? I am going ahead with that premise and talk about what I had to do with head pain that emerged and re-emerged after my own surgery. This pain was not directly related to the physical manifestation of Chiari but to how my brain responded to the years of compression and strain.
First, I had do do a lot of scar management immediately after surgery. To start with assessing something that is relatively easy to treat might be a good place to start. Rule it out or treat it then move on.
Second, according to my understanding, my brain had developed difficulties with processing information about my head and neck. When the brain cannot make sense of information, the brain forms the sensation of pain so that you take notice of it and do something about it. Unfortunately, I did not know what to do as medications, massage, exercises, then on to light, touch, hats and other things that should not cause pain started to cause a lot of pain It turns out that I had body imagery difficulties. Not the anorexia type of thing, but that my brain did not know where my head was in space. I did a lot of graded motor imagery exercises that I could do on the computer. They were crazy but they worked.
Thirdly, I did muscle trigger therapy for the head, neck, and shoulders. I had an excellent workbook.
Fourthly, I did motor control exercises for the neck and shoulder to return movement patterns to normal then on to increasing my strength and endurance. This was harder to do as I had to find someone to help me.
Fifthly, I did neurodynamic exercises to normalize the nerves coming off of my cervical spine. A pictured book for physical therapists helped me out here.
Unfortunately, I did not stumble on to the exercises in the right order that I should have done them and had to back track. It took along time, but working on retraining the brain’s function does. If motor imagery or muscle triggers are causing your daughter’s head pain there is something that can be done. I found that when doctor’s dismissed me and had nothing to offer, I knew that the solutions were outside of their scope. There sure are a lot of things that can go wrong with the body that cannot be fixed by surgery. Finish up with your doctors for sure, but know that there are other things that work if those are the issues that your daughter is facing.
Good luck to a parent struggling hard to find solutions!