I was officially diagnosed a month ago with Chiari when my doctor also told me that it was discovered four years ago after a cat-scan was done one night after fainting at work. Nice right? The roller coaster of feeling like you're going crazy because you're not being listened to is exhausting both physically and emotionally. I must of been in and out of her office a million times for all of my symptoms that are now being linked to Chiari...my mom has Chiari too and she's the one that recommended that i join this site for an outlet of venting and information. So my question is this: has anyone heard of a neurologist referring you to a physical therapist along with a prescription for muscle relaxers because according to him he cannot explain my neck/shoulder pain because I don't sound like a normal Chiari case?? Thanks!!
Welcome to the group! You're in good company here. :). I think we all know that roller coaster well. I'm still riding it. I have yet to be diagnosed, but I have do many of the symptoms I'll be amazed if they don't eventually find a CM (once I find someone willing to look...)
Unfortunately, it seems like a lot of the docs who actually know what Chiari is still don't know much about it. I've seen a lot of similar statements. What's sad about it is a quick google search would prove them wrong. Why aren't out drs willing to do a little research? Ugh.
We have dubbed this roller coaster ride we get from Drs the Royal Chiari run around....
As for the NL not having the experience to know that what u r dealing with is chiari and not something extraordinary is nothing new, I think all of us have come face to face with a NL or a NS that was like that. With that said, trying PT or muscle relaxers is not far off from something a chiari NS may suggest, it all depends on other test results...IE- CINE MRI, thoracic MRI, lumbar MRI, tests for ICP, EDS, sleep apnea,syrinx...etc...
But the pain u have is chiari or should I say typical chiari pain.
Do try to get them to do more testing.....and find a true chiari specialist to review ur MRI....
If u do not have the copies of ur MRI, old and new, request them along with the reports and always request copies of all tests to be sent to u going forward.
Just know u r not alone in this, and we will help however we can : )
how sweet u 2!!!! and welcome to this forum...this chiari family is a blessing. I am honestly not happy about the reason u joined, but knowing you are not alone does help indeed. <i got so many answers and hints and would have surrender already without the people here.
hahaaa and neck pain is a typical symptom. I will repeat for u...get a real expert. i am now after one year of runaround and a lot of tears refferred to a specialist. one specialsit is probably all u need...my nl told me honestly a lot of doctors are not educated enough and told me my only chance is a specialist...keep us updated on ur journey.
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