Not chiari diagnosed, but my brai

[mariefruit]

Hello, everyone!

I've appreciated this forum since last Feb, when I found my brain is something wrong by seeing MRI.

Today, I want to ask if someone is in similar case with me.
I was told by NS I'm not chiari because my tonsil doesn't shape like typical chiari person, whose tonsil shapes pointing edge. Mine shapes round edge, even though my tonsil is 5.2mm below.
Also, in my own view, the tonsil doesn't look blocking the CSF flow.

Actually, I took MRI 2010 because of head pain and on that time, tonsil showed 6.6 mm, but nobody noticed it.

My question is,
if there is anyone who was diagnosed that 'Not Chiari' by NS even though the tonsil is below the  foramen magnum.

FYI, I've been sick over 12 years because of body weakness, such as fatigue, muscle weakness, head pain, frequent strain muscle. I quit my study and can't get any simple job because of my weakness of body.

Thank you for your reading.

[selmaS]

  There is no way to correct the title, but u can ask what u want by re-posting to the same thread like u have...so no worries.

A NS that "one" of the specialties is Chiari is not a true Chiari specialist.

A true Chiari specialist only treats Chiari and Chiari related conditions...a NS can treat nething neurological....but it does not mean they have all the info, new ways to treat, or experience to handle ne surprises that may crop up.JMHO

Keep in mind, our list of Drs does not constitute a referral or endorsement...only that a member here has been to and treated by the Dr and liked them...the list is there for u to use to research them.

Well the comment by the Dr proves he is not a specialist as there is a new classification of Chiari 0...meaning a herniation less then 5mm...but again, Chiari is not the herniation it is a malformation of the skull...treatment with surgery is done if a CSF obstruction is present along with symptoms...or if a syrinx is found...and ALL other related conditions need to be ruled out.

I may repeat what constitutes Chiari....as I feel so strongly that the Drs are not giving it weight by the length and I have known several members with Chiari that had much more severe symptoms as a result of a herniation measuring less then 4mm's.....

AND I can not stress enuff we ALL need to rule out ALL related conditions as they can affect how we feel and heal post op should we have surgery.

JMHO

[mariefruit]

BTW, is there anyone who knows how to change the title of question?

My question title should be, 'Not chiari diagnosis, but my tonsil hang below'. :(

Thanks,

[mariefruit]

Thank you for your comment, Selma!

My NS, Dr. Shuer Lawrence, is at Stanford and I was told one of his speciality is Chiari. Also, I saw Dr. Paul Jackson, NS too, who is in the dr-list of this site.
Dr. Jackson also said I'm not chiari, because my tonsil is too short, :-(

However, Selma, your mention, 'Chiari is not the herniation but the malformation of the skull' makes me think about chiari-malformation clearer.

Thanks a lot!

[selmaS]

  Hi and welcome to the Chiari forum.

Yes, the questions should be was the Dr that said NOT CHIARI a true Chiari specialist?

There are far too many Drs , NS's included that are not well informed or experienced......

Have u had a CINE MRI to see if  u have a CSF obstruction?
It is not a clear indication of a blockage when reviewing a reg MRI as that is a still pic and with a CINE it is a movie in real time and they chart it against ur BP to see if it pulsates....

It is possible to have an obstruction that changes as ur heart beats....so it is not a complete blockage...

Chiari is not the herniation but the malformation of the skull....so Chiari, or not Chiari u can have symptoms either way...only more testing will tell u just what is going on.