I’m so sorry you’re going through this. Reading your post, I can understand why you’re feeling frustrated and abandoned.

A friend of mine went through a long ordeal with severe occipital nerve pain. After years of searching, she eventually found relief with an occipital nerve stimulator. I remember how hopeless she felt beforehand, and a year after surgery she wrote that she had finally gotten her life back. I know every case is different, but her story reminded me that sometimes there are options, even after years of dead ends.

You’re already doing something important by connecting with others here who have lived through similar experiences. Patient communities can be an incredible source of practical information, physician recommendations, and emotional support.

My husband receives treatment at Penn Medicine, and we’ve had an excellent experience with their palliative care team. They focus on improving quality of life and symptom control, not just end-of-life care. I don’t know whether a palliative pain consultation would be appropriate in your situation, but it may be worth asking about while you’re waiting for your revision surgery.

One thing I’ve learned as a caregiver is that, unfortunately, we often have to be our own strongest advocates. It sounds like you’ve been doing exactly that despite every obstacle.

You deserve better, and I truly hope your revision surgery brings you the relief you’ve been searching for. I’m attaching Julie’s posts in case any part of her journey is helpful or gives you a little hope.