Only the best can touch my brain

Why do we travel across the country to have brain surgery?

I have chiari malformation and a list of comorbid conditions such as Ehlers Danlos, intracranial hypertension, mast cell activation disorder, etc.  If I had ONE of these issues, then maybe I wouldn't have to travel for treatment, maybe I could find help here at home. But, each of these conditions feed on each other. One affects the other.  A surgeon may tell me that he can fix my brain, correct the chiari. But, will he understand that having EDS means that if he removes the tiniest bit too much bone that I may develop severe instability between my skull and upper vertebrae and that it may be as deadly or more so than the chiari? Will he understand that I may react badly to all of the normal medications and anesthesia because of the mast cell issues?  Will he be familiar with the fact that we are more prone to have clotting disorders, more likely to stroke with these surgeries? I could go on and on but I won't.  Lets just say that no, the majority of neurosurgeons do not see or accept the entire picture.  But you have to if you want to live.  There are a small handful of surgeons who have put time, hours, years into studying us, learning how to help us.  And some of us are only willing to trust our lives to them.

I found a surgeon who understands me and what I live with. Twelve days ago he decompressed me, cut out the herniated part of brain, made room in my skull. Then he opened the top of my head and inserted a shunt. Then he closed off the failed shunt in my lower back. Twelve days. And I am here to write about it, tell you about it, advocate for all of you like me. I am already healing, thinking more clearly, moving better. Twelve days after a major ten hour brain surgery, I am home and living again. I believe that its because I traveled to one of those surgeons. I traveled from Kentucky to New York to regain my life. And I am here now to tell you all about it.