I saw a Neurosurgeon yesterday and he said my cerebellar tonsils were just one and a half mm below the acceptable level and most Chiari Malformation patients' are around 2cm or 3cm below that line.
My headaches are absolutely terrible. I am starting to develop neck pains too now. I suffer with all the symptoms a typical Chiari Malformation patient suffers with, but he said these things are likely to be caused by something else.
I don't know what to do now. I'm not rich and I'm on disability, so my options are limited. But it looks like I don't have Chiari now anyway. I've been told by two different hospitals now that I don't have it.
Interesting....I have Chiari 2.2 and my neuro diagnosed me with peripheral neuropathy...which is possible, but I also have Chiari symptoms as noted by a NS. My NS has asked me to have a follow up EMG/NCS and also to have a C,T,and L spine MRI to check for a syrinx. If you can go to a NS that specializes in Chiari.
Shogun, I agree with everything Em said. Forget about these last appointments and keep moving forward. Most NSs have an outdated education on Chiari- statistically it’s no wonder so many if us have this same experience. There are great NSs out there who actually help people. Keep fighting!
I agree with those above. I know I'm new to this and don't know anywhere near as much as almost everyone else on this board, but all the research I have done has said that the size does not matter when it comes to Chiari. Some with barely any length on the tonsils have lots of symptoms and some with really long ones have hardly any symptoms.
I would try and find a different NS, one that's more current on research. I definitely know how much of a pain that part is, my first neurologist I went to had no idea at all about Chiari. I'm pretty sure he googled it before walking in and telling me what I had, and didn't know much beyond the name.
Thanks for your help guys. I'm feeling really deflated and I've completely lost my enthusiasm, but once I get a bit better and stronger I will look into finding a neuro surgeon who specializes in Chiari Malformation.