I have finally visited the Neurologist! I don't know how long it has been and I don't know how I have ended up with this guy. But he knows more about Chiari than any other doctor I have seen beside the 2nd neurosurgeon. I LOVE this man!! I saw him in November and he ordered new MRIs and blood tests. This man talked to me face to face for over and HOUR!! Who does that??? Dr. Orr! Crazy thing is he specializes in Alzheimer's, but this man knows so much about Chiari it is CRAZY!! He explained so much to me that no one ever had. What the spinal fluid is doing, (or not doing), why grunting is so bad for me, I mean all this stuff that would have been super helpful when I was diagnosed 5 years ago. (At least I figured out it wouldn't be wise for me to have anymore children!)
Now onto when I went back to him yesterday to talk about my new scans. I haven't changed!!!! HURRAY!! My chiari herniation is still 7mm, he said that as of right now he sees no reason for surgery since my symptoms are still ones that I feel are livable. He did put me on another medication for pain, it is supposed to reduce pain and spinal pressure Indocin I am his test subject. I told him when I lay down on my stomach I feel like I am drowning. Not literally I can't breath drowning but that my head is filling with fluid and I feel like my brain, face, is sloshing around and I have to hurry and turn over. He said how long has this been happening? I told him years. Just something I have learned to live with. He said that was another spinal fluid pressure issue. See I love this man. All the other doctors have just blown me off!!
He also had a bunch of stuff tested in my blood, you know how much of my rx was in my system but I had told him I was super exhausted all the time. Come to find out my iron was an 18. I am now starting iron pills to see if that helps. I will have it retested in 3 months. So that was my visit and have I said I LOVE THIS GUY???