Unofficial Symptoms List ~~

[selmaS]

Ok...we know what most Drs will accept as a chiari symptom...but, we also know we have many more symptoms that r chiari related that fall thru the cracks...lets make a list of all the symptoms not on the Official lists.

[ND1970]

I get a squiggly line in my left eye sometimes.  Like a bad picture tube where the picture is going.  it's in the upper left hand corner.
And the incontinence.
When jogging, I run into garbage cans, trees even people, as my spatial sense is off
noise and sensation when laying down that fluid is running in the back of my head
buzzing.  sometimes as loud as a bee hive, sometimes barely audible

[selmaS]

  HI and welcome back.

I know what u mean it is very diff and I am one that had to travel out of state to get to a Dr....

That member is no longer an active member, u may want to send a PM as she will receive an e-mail .

  I know she has not posted who she did go to or how it turned out.

[Marine_Corp_Brat]

Thank you for the list, I researched this long ago! as my insurance won't cross state lines I can't go to most of these and it was disheartening to see a post from a Chiari sufferer on this site that lives in Mobile Cheerio767 wrote:Hi.  I live in Mobile and was diagnosed in 2000 at 33.  Their are no chiari specialists here so curious as to whom you saw.  The one neurosurgeon at the *University hospital network does not treat it and said to come back when paralyzed.  
Needless to say I wrote back b/c I was floored! I left the name of the one I found on here and hope to find out if they are able to see this Dr. and how they like him! It's crazy that we can't get the care we need because there are no docs around and insurance won't let you go where you need to!

[Csly]

Mobile Alabama??? I am in Alabama too did you ever find a dr

[selmaS]

  Hi...the list we have is for the states here, and does not even cover all of it, as the list is comprised of the members Drs names....

There is a list for the UK, it is the Ann Conroy Trust.....there is a link to that list in the Health Pages...I am not familiar with ne of the Drs on the list nor am I familiar with the org that made the list....

Here is the link ....http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS-UK/show/1503569

[Hayleyrose]

where is this list and does it cover the world not just america? x

[selmaS]

  Many of us do not have a Chiari specialist near us and do have to travel, I did, I went out of state as the Drs here had no idea how to treat it....that was the best thing I could have done.....do look at our list and use it to research Drs...keep in mind they r names of Drs that other members went to and liked, not all may be true Chiari specialists...so do research them as the list is not a referral...u may find one closer to u then u think.