Is this Chiari?

[bosmama401]

I have been diagnosed with 5.7 cm. syrinx in thoracic spine, and a foraminal narrowing at C5-6 and C6-7, and a cerebellar tonsillar ectopia. Is any of this mean I have Chiari? My NS just said no tumor causing syrinx. He says spinal cord trauma. Is this chiari, if so, how bad? Thanks for any help.

[selmaS]

Hi, sorry we do not know all the good chiari drs out there, but to help u do research we do have a list started by the members here....do take a look and see if there r ne drs in ur area or in an area u can travel to.....http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

....we also have a link to a Health Page titled LINKS which has non profit orgs that will fly u to a dr appointment or surgery.....http://www.medhelp.org/health_pages/Neurological-Disorders/Links/show/538?cid=186

Hope this helps : )

"selma"

[bosmama401]

I am new on this forum, but can already tell it has compassionate members. Thanks for answering my many questions. do u no of a good specialist close to eastern Ky.? or in Indi? Once again, thanx 4 your help.

[selmaS]

Hi...I have to agree with Pam....call a true chiari dr to find out...the fact u have a syrinx means u need to get to a dr that is well informed on these matters.

As Pam pointed out, a syrinx is a sign that u have a CSF blockage and it can lead to perm damage....

The cerebellar tonsillar ectopia is another way to say Chiari...but, chiari is the malformation of the skull not the ectopia...and the ectopia or herniation can be the result of a CSF blockage as well, or even tethered cord pulling it down.

Since ur dr is saying it is trauma related, did u have an injury or MVA that could be the reason for it?Not everyone with the signatures for chiari and syringomyelia will  actually have it...it can be acquired like ur dr suggests ur was or congenital.....

"selma"

[pamk5]

It sure sounds like it.  The most important thing you can do at this point is get a copy of your scans and reports and find a true Chiari specialist.  There is a list here of docs that members have used and liked.  I would do this sooner than later since you have a syrinx as this can cause permanent damage pretty quickly is my understanding.  In order to know how bad there will need to be more tests done like a Cine MRI to see how much blockage of CSF you have.  I am sure others will give you more info very soon.  

Best of luck to you!

Pam