Yes seek additional help. I have an arachnoid cyst that was causing my Chiari qnd spinal cord compression. It did take me 3 months to get surgery. My ns although he did nothing at first and kind of told me it was no big deal did say he would check it in 3 months to see if it was growing or changing and a week before the apt I had emergancy surgery by the same ns. Sometimes presitence pays off. I will forever battle until I am back to myself. I know have occipital neuralgia because they waited too long and the nerve got damaged. So when you have a rare brain disorder continue to fight. I gave up for about 6 months because I didn't have the energy to fight them but I will never stand down again because if you stop seeing drs or keep things in they won't suffer only you will. Hope this helps