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.
Hi and welcome to the Chiari forum.
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 : )
hi baby girl - i'm glad you took my advice :) everyone on this site is amazing and so helpful and SO full of knowledge :)
Thank you momma <3 I feel a little better already, just that I can post whatever and people aren't going jump all over my bandwagon because they know EXACTLY what it feels like :)
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.