After a very dissappointing appointment with a NS last week I went back to my local neurologist today for a follow up appointment. He wants me to go see another nuerosurgeon and get a 2nd opinion. I don't mind going but I just hate to waist the time and money if my Chiari isn't the cause of my symptoms. He also has me going to get a lumbar mri tomorrow, blood work, and flexation xrays of my cervical and thoracic spine. He still seems to think that my Chiari is causing my symptoms. I'm just not sure though since my cine mri showed no blockage of CSF. I think he is doing the lumbar mri tomorrow to rule out tethered cord syndrome, but from what I have read on that it seems like that is something that would of been noticed when I was a child. He also wants me to see a rhumotologist and get tested for EDS. I am grateful though that he is taking steps to help me get to the bottom of all this. I really appreciate those who commented on my last post, it is really nice to have this support group and talk to others that suffer from similar symptoms and can understand. It seems like so many of you have bulged discs in your neck as well as Chiari. I too have two bulged discs I think between c-4 and c-5, is this something Chiari can cause?
You do not have to have blockage to have serious Chiari Symptoms. Your NL is correct in ordering additional tests & sending you for another NS consult. There is a lot of Chiarians that have cervical spine problems. My C spine has been totally rebuilt & three years later they removed C-5. I always have herniated discs.
Hi Tracy,
If I do not have a blockage though what would be the treatment of Chiari symptoms if they are caused by chiari? I am very grateful my NL is taking this serious. I am sorry to hear you have had such spine problems. How are you doing now after your C spine has been rebuilt?
TracyZ said:
You do not have to have blockage to have serious Chiari Symptoms. Your NL is correct in ordering additional tests & sending you for another NS consult. There is a lot of Chiarians that have cervical spine problems. My C spine has been totally rebuilt & three years later they removed C-5. I always have herniated discs.
It sounds like you have a really good NL which is very rare on this board. I think all the tests are a good idea as is the second NS opinion.
I say GO for the 2nd opinion. I have not gotten the decompression surgery myself either, However, I went to two different NS and had a Dr. at the Mayfeild Clinic reviewed my films (I sent him copies of the CD's) and reports. Mayfield told me that my doctor should order a CINE MRI, which my PCP did. It shows that I do have diminished flow on both the interior side (along the brain stem) and the posterior side (along the skull side). The last NS said he doesn't think I have to have the surgery right now. We would watch it. He also gave me a list of certain blood tests he wanted me tested for to bring to my PCP. Everything was ordered, and when you see the list of symptoms and you do the harebrained thing that so many of us do - go to the internet and after reading, you say, oh it could be anyone of these things; I was tested for Lupus (which I was tested for when I was 18) - came out negative, tested for Lyme Disease - Negative, Rheumatoid Arthritis - negative --- vitamin A, B & D inefficiencies - negative, Extreme Fatigue Syndrome - negative. Was shocked on the negative for that one, I am always exhausted something I never was before I started getting symptoms. Everything pointing to just my Chiari, but I do have Cervical Spine problems too. They are a source of pain that I am currently getting treatment for.