More news!

[wingnutt]

Just got a copy of my MRI. Cerebellar tonsils 8-9mm below foramen magnum asymmetric prominence of CSF space measuring 1.2 cm could be a small cyst. Possible small arachnoid cyst in left CP angle region!??

[selmaS]

  As Viv is trying to say or imply is that Chiari is not well known even the info they get in med school  may take all of 5 mins to cover....we have to remember  the only way they knew about Chiari was during a postmortem....MRI's were used in research in the 70's...and started to use to dx in the late 80's....but bcuz of the cost were not widely used....so even though they knew what chiari was, they did not know how to dx it or how it would or could affect us....I went to Drs starting back in the 60's  so I got dx'd of migraines, anxiety and  growing pains,,,,,same things they still try to tell  us now even thou they can see the blockages they still do not have the research in how it affects us....

SO, all in all most Drs do not know what it is they r looking at , to know what to share with the patient...

  My case in point, my first MRI was of my lower back....and it showed I had tethered cord, and that was in the early 1990's....I was never told and found out bcuz  I requested all MRI's and reports when I got my dx of Chiari in 2008....

This is y we always say go to a Chiari specialist bcuz  they do their own research....and foucs all their attention on Chiari and Chiari related conditions.

[Viva001]

The shortest & least critical answer is that research on Chiari is in its infancy.  Although Selma corrected me, & said it's in its fetalhood.  (or something like that).
:)

[wingnutt]

Why didn't my pcp or the NL tell me the whole truth about my MRI reports?!!!  All they said was, "ya, it's Chiari malformation "! And in reality it was more than they originally told me!!

[wingnutt]

Not yet. I'm making an appointment with a doctor in Boston at Massachusetts General Hospital. He deals with Chiari and I got his name and number from another Chiari patient who went to him and liked her results.

[selmaS]

  Hi...I know several members here with Chiari also had an arachnoid cyst....many times they can leave them alone as they do not do too much ...depends on the size......and if it is creating an issue.....

Did u have  a CINE MRI yet?