Oh how we cannot wait for March 5th to get here so Berkley can see Dr. Hepworth in Colorado. The last few months have been extremely rough on Berkley! In November she had an appointment with her Neuro Opthamologist in Chattanooga. Her tests and exams showed that her vision has rapidly deteriorated since her last appointment with him (we see him every 3 months). He ordered Berkley to have an MRI of her brain and another Lumbar Puncture to check her Cerebrospinal Fluid level. She was supposed to be completely sedated for this lumbar puncture, due to so much pain & previous lumbar puncture trauma. Unfortunately, she was completely awake and it was a really traumatizing experience at Erlanger. The doctor ordered her MRI with contrast, but after 10 needle sticks, they gave up and did it without contrast. The next day, the radiologist called and asked how soon we could come back for more images? We went that day, and he saw changes on her MRI that he wanted us to have an emergency consult with a Neurosurgeon at Erlanger. This was on December 10th, and due to the Holidays and crazy weather, we did not see him until January 16th. He told Berkley “You are a really complex case and from a headache standpoint, I don’t have anything to offer you.” He basically shook her hand and gave her a pat on the back. He said he would refer us to his colleague in the ENT department. We were REALLY hoping he was going to understand what is going on with Berkley, but he said it was above his head and out of his league. I’m thankful he was honest, but we were hoping to have a Neurosurgeon closer than Chappel Hill, NC. I actually received an email from her Neurosurgeon in NC today that confirms Dr. Hepworth is the next step and worth the wait! I thank God Berkley has the strength to fight and not give up. Vascular Eagle’s Syndrome is SO RARE that even the experts are stumped. Her entire cranio jugular venous system is worsening and it causes soul sucking pain. Most days she lays flat with as many soft pillows and blankets as possible. It’s heartbreaking to watch Berkley miss out on so much because she is so sick!