I saw Dr. Oro today and I am not sure how I feel about my take on some of the aspects of our visit. Soooo, I am hoping someone, or many of you here could have some input for me...
First off, he re-read my brain MRI. What I have is a 7mm herniation on one side and the other side showed at 0. It was right at the line he drew. So, Chiari on only one side. Did any of you show that???
Then, it shows that the ventricles in the center of my head are small - kind of squished. He said that could be a sign of general brain inflammation, and he talked mostly about diet for that. That kind of threw me off. Because we talked about a lot, i forgot to ask him if Chiari could squish and inflame my brain. Any thoughts?
He said that having only one tonsil so enlarged could either be because it is so large that it is pressing on the other tonsil and inhibiting it from dropping, or that I have one tonsil herniated because the pressure from my brain inflammation is pushing that one tonsil down.
He was a bit thrown off because I don't have crippling headaches. I always have a mild headache, but not very often to I have ones that put me in bed. I also have a very high pain tolerance. I don't get an automatic headache when I sneeze, cough, etc. Did all of you who had decompression surgery, and it helped, have typical Chiari headaches before surgery???
I do have one compressed cervical disc and one in my thoracic area. He didn't seem to think it was quite bad enough to cause my symptoms. The curve of my neck is opposite of what it should be. That causes some stuff, and he said we want to keep an eye on it, but nothing to pursue right now. It seemed more like he wanted me to be aware of it and that it could cause some pain.
Given all of that, he wants me to look at changing my diet, which I know I could always eat better, and would be a good thing (the Paleo diet is what he likes). He talked about OMega 3 for inflammation. The ultimate thing he wants to see is a CINE MRI. I will have it in the morning.
He didn't eliminate decompression surgery, but wasn't totally convinced yet it would help. I am not buying that my diet has caused me to flipping go downhill in the last 2 months. I am not saying he said that was the end all, but it really threw me off. He did say that the 7mm herniation has impeded the spinal flow behind the herniation itself. Oh, he also said that he often sees that the two tonsils are herniated unevenly, but rarely sees one is so large (sounds like mine was big around too) and the other is not herniated at all.
So, friends, I am dismayed. I need input, encouragement, your similar stories. And really, I am more than dismayed. I cannot keep going on like this. I am glad that he doesn't want to put me under the knife without knowing more, but I just am frustrated and sometimes feel like a hypochondriac. He is strict about weight, and that isn't one of my issues.
Please help me