Chiari problems

Hey guys my first post here. I have been having some real issues with the doctors overt the last coupled of week so ill just give you my story and see what you think.

Over the last few years I have been suffering with various symptoms. These are difficulty hearing in noisy areas, memory problems, poor balance, fatigue and poor quality sleep and nose bleeds. Finally a month ago my doctor sent me for a ct scan. The results came back saying that I had chiari type 1. My. Doctor told me it was nothing to do with my issues and was an incidental finding.
So naturally I went home and did some research and it all seemed to fit chiari. I phoned the doctors back to be informed I had already been reffered to to the neurologist.

Iv spent the last four week stressing about this diagnosis and felt like I was getting somewhere.

I had my appointment last Thursday to which to my suprise I was told to forget about chiari because its an irrelevant illness and I probably didnt have it anyway as ct scans are not accurate. I now am waiting for a mri but I feel more lost than ever. Why would they tell me I had it if it didnt diagnose it and why does mo one seem to care even if i do. One doctor tells me to stop heavy activity and. The other says do what you want. Any one else had these issues

I have. It seems neurologists do not take this illness seriously at all. I was told by 2 neurologists that this could in no way cause my issues and that I most likely had chronic fatigue syndrome or fibro. I finally got an appointment at the Mayfield Chiari center where they said all my symptoms were classic chiari.

If I were you I'd go ahead and get the MRI...ask for a copy of the disc (they can give you that right away) and the report when it is ready. If your neurologist isn't helpful at your follow up look for a neurosurgeon who specializes in chiari and see if you can send in your MRI for review!

I say wait for the MRI and then find a neuro surgeon. Since u r having symptoms they can’t say it is incidental…I think the key for most of us will b to find an experienced doc who is up on the newer criteria for Diagnosis which takes symptoms into consideration

I had the MRI that diagnosed CM1 20 years ago... and another MRI just in August since my care has gone undone for so long. I also had a neurologist appointment in August and he said that my CM isn't bad enough to be causing my fatigue and other symptoms and he suggested nerve blocker injections for my headaches (I am not comfortable w/ that after reading about it). It is SO frustrating to go to a doctor, someone you think should be able to help you, and to be blown off.

I have my first appointment w/ a neurosurgeon on October 19, so I will see where that takes me. With my limited research... my symptoms from birth fit perfectly w/ CM, but try telling that to someone who looks at you and sees nothing wrong....

Definitely go for the MRI. I'd give more advice, but I'm just after that point myself right now. ;)

Seems Neuosurgeons, and not all, are the most skilled at assessing Chiari and its implications. Having a Cine MRI, that sshows graphically and measureably any interruption of spinal fluid flow works ends speculation. Having a neck x-ray and tilt table test was also among the tests ordered after the neurologist's initial assessment and speculation. In past, I'd had both and head & later body MRI's. Turns out neurologists saw the Chiari, but since they don't treat Chiari, it was considered incidental and not treated nor was I referred because s/s could better be explained by other Dx. I know about confusing messages too. In terms of activity limitations pretty much on own. Still learning. If a symptom gets worse then I suspend or stop activity. Ex. If I bend over to pick something up, good chance I'll experience head pain; same w/ tilting head backwards. I also have POTS so any activity that causes my body to heat up will undermine my ability to continue the activity. I am learning to understand ways my body "speaks" to me. Hope this helps.