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How long before diagnosis?

Yes so it's been a roller coaster of symptoms, the worst been the ear pressure, and the extreme fatigue like i need to take a nap every five minutes.
I can't get a diagnosis because i got no syrinx, and my herniation is very minimal less than a millimeter, almost nonexistent.
All my symptoms lead me to chiari !!  
How long did it take before you got a diagnosis?!
2 Responses
620923 tn?1452915648
COMMUNITY LEADER
I had been to Drs all my life.....non DX until I was 48....it can take time not only because not all Drs will give MRI's for the symptoms we may present with ...but so many do not know how Chiari can and does affect us...and they dismiss it so many times....
When was your last MRI? Do you have copies?
What areas did you have a MRI of?
1756321 tn?1547095325
A standard MRI - sagittal (side) view is used to help identify Chiari 1.  A CINE (stands for cinema) MRI helps to determine the amount of cerebrospinal fluid (CSF) flow.  A CINE MRI can be useful in cases of borderline/Chiari 0 malformations or if decompression is needed.

Excerpts from Chiari Australia - frequently asked questions:

"2. Does size matter?

-The definition of chiari used by most doctors is that the tonsils need to be herniated at least 5mm to be classified as chiari. There is no correlation between the length of herniation and symptoms or prognosis.  However there has been new research which focuses on the Chiari 0 where there is no herniation as seen in classic Chiari, but that the tonsils block the CSF flow as much as Chiari 1 causing the same issue.

4. What is borderline or type 0 Chiari?

- Borderline Chiari is not always recognised by all doctors. It is where the cerebellar tonsils are not herniated but crowd the Foramen Magnum stopping CSF flow like in Chiari 1 malformation. This can cause the symptoms seen in Chiari 1 and can be treated the same way. It is also called Chiari 0 by some."
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620923 tn?1452915648
Allentown, PA
987762 tn?1331027953
Australia
1756321 tn?1547095325
Queensland, Australia
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