HELP! Atlanta CINE and PM

[Eyestagmus]

I was diagnosed a year ago with CM1 at 6mm.  I have so many symptoms and they are worsening since car accident when I was diagnosed.  However, I was post neck fusion, 4 levels, 2 years, I was never told I had Chiari, but dx with Nystagmus, cluster/migraines, complicated migraines, extreme headaches when I cough or sneeze or strain, Horner's syndrome, costochondritis, condromaltia in both knees, ringing of my ears, and the list continues...sleep apnea, bad-- frequently feeling of passing out, mostly with the pain in head....I have seen PM and they disagree that any of this is Chiari related and that 10-20% of the worlds population walks around with CM an does not even know it.  I have cried at several Dr. visits because the pain is so real and the 'episodes' are excrutiating...no migraine meds work.  Can anyone please give me any advise and any way to have a CINE MRI, as none of the Docs have even heard of it, or either the one that did said he believed the car accident just made my brain swell and it's probably gone down now.  So sad...I need someone who will follow through. this is real!  Thank you in advance.  

[selmaS]

  Hi and welcome to the Chiari forum.

Thanks for sharing that info on the CINE MRI's.....

Hope u stick around and share more of ur Chiari journey with us.

[Jenniferwells]

Dr. Barrow at Emory is fabulous. They perform the CINE MRI there at the hospital.

[selmaS]

  Post neck fusion syndrome....isn't that the same as a failed surgery?

Goodness I have no idea, but I would call around to other Drs and send copies of ur MRI's and reports and see what a diff set of eyes can offer.

I had a Dr in NY send me an RX for testing to be done here at home....some will do that for u, so do get in touch with a Chiari specialist and see if with the info and MRI's u have if they can offer u that type of help.

[Eyestagmus]

AMEN!!  I read somewhere that somebody got a Dr. from Ohio to order a CINE in Atlanta?!?  I cannot find that anywhere now.  The Dr. is key, but family and friends, I feel are thinking I am just searching until I hear what I want to hear.  It is very frustrating because this pain is so debilitating.  I was diagnosed yesterday with some sort of post neck fusion syndrome!??!?  Where do I start>

[selmaS]

  Hi and welcome back, it's been a while since u posted.

I understand ur frustration and it is that Drs just are not trained, educated etc on how Chiari can and does affect us. It is true not all with low lying tonsils have symptoms but low lying tonsils are not the same as Chiari and far too many Drs refer to herniated cerebral tonsils as Chiari  when it is not, The symptoms and treatments may be the same, but it is not the same condition.

Ur Drs need to determine if u have Chiari or low lying tonsils and then if the tonsils are indeed causing a CSF obstruction....so to get the CINE MRI to know that u need a Dr that understands all of this, the Dr is the key,

[Eyestagmus]

Sorry, should have been 8mm.