Oct 6 Neurologist Appointment - New Info

Hello everyone,

My neurologist appointment went as expected.

I did learn one new thing. He said my spinal column was also much smaller than a normal adults. He said it was congenital - I guess I was born that way. I wish I could remember more. The appointment was at 3:15 and over an hour away. By that time of day I'm beat and they spent a lot of time with me. And I sat in a chair and he sat on the exam table and the PA-C sat on a tall stool, so I had to look up at them, which made me tired and my neck hurt. LOL. I was to embarrassed to stand up or ask them to sit down lower for me!

When I first went into the appointment I saw a PA-C first. At first she said there were no abnormalities in my MRI's, bla bla bla. My husband and I kept looking at each other wondering if she was in the right room because the MRI report that came with the scan I had in my purse was two pages long. LOL. AND on the neurologists own website he reported that my scan was abnormal. She kept calling my scan beautiful. So I was asking her questions and she was answering with generic answerers. She said that the neurologist had looked at my scans and didn't note any problems. Then she said she was going to go talk with the neurologist to see what their next move would be. She came in about two minutes later and asked for my disk with the images because the images they were sent were about two inches tall each. At which point I just smiled and gave her the disk.

They came back in and spent about 45 minutes with me and were both very nice. They said that they didn't know much about my condition and did not have any answers for me. They recommended they send me to a neurosurgeon for a second opinion since they were nearly positive that I did not have MS. They did not want to recommend the lumbar puncture at this time. Which I told them I was not ready for anyway.

I did specifically ask them about the dangers of lumbar puncture with people with Chiari and they flat out told me there were no dangers.

He again said my Chiari 1 malformation was small - so I am assuming he is referencing the herniation rather than the actual malformation of the skull. Which I believe they are not measuring correctly either. They did believe some of my headache symptoms were from the Chiari, but nothing else. They said seeing another neurosurgeon and hearing it from him/her would help ease my fears in this area. However, they are sending me in state - so that means it will not be a neurosurgeon that specializes in Chiari.

I specifically asked about the retroflexed odontoid with pannus - I was told that the neurologist looked at it and did not see a problem with it. Speaking of, I played around with the grabb-oakes measurement. Not sure if I did it right. What do you all think? I attached a picture.

They also told me that Chiari symptoms present themselves very quickly - which is why they did not believe my symptoms were from Chiari. ???????

He also said I have that herniated disk at c5 and c6. Its a very small herniation and he said in a regular person it probably wouldn't be a big deal, but where my spinal column is so small it might be causing issues. So, if that is causing my loss of strength in my hand, pain, and my inability to open bottles and doors, etc, he said it was unlikely to be fixed without surgery. Yuck.

So, he said, with the herniation, the Chiari 1 malformation, and the small spinal cord, he thought it best to send to a neurosurgeon.

Basically I left there with more determination to send my images and info to a Chiari specialist in the meantime. :) I did manager to copy my MRI CD's onto other CD's and they actually work! Patting myself on the back for that.

They were very nice, spent a lot of time with me - but I think I would be more comfortable actually seeing a Chiari specialist at this point. Especially since I've scared myself to death from searching around on the internet. LOL

I'm glad he decided against the lumbar puncture! How very little a NL knows about Chiari is honestly frightening!