Klippel-feil syndrome

I was diagnosed with kfs type 4 as a child. It was challenging. I was never able to do sports and was always treated like glass. Which made it hard to find friends. At age 15 I underwent a 16 hour extensive surgery to save my life. After I was supposed to be able to live a normal life if I lived a healthy lifestyle. Well here I am 27 years old and feel pain everyday. It doesn't help that I was dignoised with thyroid disease in 2015. Recently in October 2015 the doctors did a screening in my hearing and I have complete hearing loss in my right ear and the left ear is going bad as well. In March 2016 my primary care doctor ordered a scan of my neck due to loss of reflexes in both sides. There was some findings but my Pcp still won't send me back to a neurosurgeon. With my insurance the pcp has to refer you to the specialist or you won't get seen. :( I guess this is how I have to live my life now. Not getting proper care or treatment for a syndrome that nobody seems to understand. I really miss my old doctor. Dr. Menezes the one who did my surgery. He would know how to fix this... ( again) well that's all about me. Hope us suffers can spread the word that we are not alone and a need understanding and reserch for us to live Better painfree lifes.