Hi Everyone :).
I have probably a first positive update. Over the last two months, in the area of NY state, I’ve learned two things, which have lead to something positive. (1) Neurosurgeons in this area who specialize in Chiari, are no longer taking Chiari Patients, and (2), all neurosurgeons in-network for Tri Care Prime (insurance), are all either pediatric neurosurgeons or general neurosurgeons who have never dealt with Chiari.
So here we go. I went into the city, and walked into the neurosurgery office of some of the best neurosurgeons NY/NYC has to offer. I spoke with three amazing ladies in this office, and folks, I feel more positive about searching for a neurosurgeon because of them. These ladies who work for a neurosurgeon who specializes in Pediatric and Adult Chiari, who I am trying to get my first appointment with, were amazing. They had me speak to them about how my symptoms started, how they’ve progressively worsened, what imaging I’ve had done and what the results state, they explained that likely my tethered spine is a result of both Chiari and my Scoliosis (had scoliosis fusion in 2006), and that my neck issue could be an issue as well alongside the Chiari. They are shocked my spinal surgeon has not written a recommendation for surgery; they are not pleased that neurology tried to misdiagnosis me a second time in my life; and that not happy neurosurgeons I’ve seen are pediatric, do not specialize in chiari at all, or have flat out turned me away.
Long story short, these ladies took my full records, imaging results, imaging dics, and my fully typed symptom list. So all of those who told me to type up my symptoms on here, thank you!! It’s helping a lot. They took my name and contact information, and as of tomorrow will have this neurosurgeon start reviewing my records and imaging and make a determination by next week if I will be heading into decompression surgery immediately, or starting treatment and then surgery. They even are helping me figure out programs within the hospital that help cover full medical bills, or a great majority of them, which is a huge help.
I’ve always worked and paid my bills, and all I want is to become a police officer, and an author, and help people, and be able to support myself and my two dogs. To ask for help financially for a neurosurgeon, I wanted to cry in that office, but there help and belief that I’m being honest, just made today much better, and them getting a neurosurgeon to take my case, made my week even better. It’s nice to find a neurosurgery office where the staff are intellectual in Chiari, specialize in Chiari, but also listen, are empathic, and understand. It’s a great feeling, makes this long, painful journey worth it. Makes fighting worth it.
For all those struggling to find a neurosurgeon, keep going! Don’t give up! There were days I wanted to, and had to fight myself to make sure I didn’t give in and give up like I wanted to. It’s hard, but you can keep pushing forward .