Recently Diagnosed

Hello everyone.

My name is Melinda, and I am a 35 year old female living in Pennsylvania.

I was just told on Monday that I have Chiari Malformation type 1. I had never heard of this disorder until then, and while there seems to be a plethora of information available on the web, I'm still kind of lost in what any of it means for me.

I went to the Orthopedic surgeon last week on Tuesday for sharp neck, back and right shoulder pain. I've had neck and back pain as long as I can remember, but Tuesday was different. My entire right arm went numb from the pain.

The Ortho did an x-ray and found no bone damage so he requested an MRI. I had the MRI on Saturday and on Monday I saw the Ortho again to get the results. He said that I had a mild to moderate herniation in my C-5 disc that was compressing my C-4, C-5, and C6 disks. However, he said that he was reluctant at this time to recommend a treatment plan until I spoke to a Neurosurgeon due to the Chiari Malformation. I asked him what that was, and he said he was not an expert and felt uncomfortable even trying to explain anything. I asked for a copy of my MRI report and it states, "The cerebellar tonsils project 5.5 mm below the level of the foramen magnum, concerning for mild Chiari Malformation."

I don't go to see the Neurosurgeon until November 30th, and I don't even know what to ask about. I saw a list of symptoms related to Chiari, and I could say that I have several of them. But I could also say that they could all be explained by other things.

I guess what I'm really looking for right now is kind words from people who have this disorder, and some reassurance that I'm not crazy or overreacting, and that other people have felt this fear and confusion while waiting to get more information.

Yes I had basilar invagination complex Chiari. I had tingling, numbness, back and shoulder pain and headaches. The surgery helped very much plus it stopped any progression. I want to Hopkins which is excellent. Good luck