A few pictures worth 38 words from a expert

I sent a famous Chiari malformation  doctor on the wast coast the same thing as my first post the other day. this was the response:

The images you sent me show borderline low-lying tonsils, but do not show changes seen in Chiari malformation. Your tonsils are rounded and there is ample room for cerebrospinal fluid to circulate behind and below the tonsils

This is what I understand:
Chiari malformation occurs when the section of the skull containing the cerebellum is too small or is deformed, thus putting pressure on and crowding the brain. The lowermost portion, or tonsils, of the cerebellum are displaced into the upper spinal canal. The pediatric form, Chiari II malformation, is always associated with a myelomeningocele. The adult form, Chiari I malformation, results primarily from a small back portion of the skull.

When the cerebellum is pushed into the upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid (CSF) that protects your brain and spinal cord. This impaired circulation of CSF can lead to the blockage of signals transmitted from your brain to your body, or to a buildup of spinal fluid in the brain or spinal cord. Alternatively, the pressure from the cerebellum upon the spinal cord or lower brainstem can cause neurological signs or symptoms.

What I don't understand is If the tonsels are rounded and there are no signs of Syringomyelia does that exclude Chiari malformation when the section of the skull containing the cerebellum is too small or is deformed, thus putting pressure on and crowding the brain ?  Can over crowdind  in the back of the skull be excluded  for impaired circulation of CSF because there are no signs of Syringomyelia ?  
Or is the truth of the matter unless you have signs of Chiari malformation II with Syringomyelia it's harder to get  real professional help for it at the Chiari malformation medical centers because it is not life threatening yet ?
Since the onset of all symptoms were caused by trauma IMO there would be less reason to think that just because there are no signs of Syringomyelia yet that I don't have a  impaired circulation of CSF but I'm not a expert doctor either. I just know I have all the symptoms of Chiari malformation.
I saw my PCP today and will see my nuro doctor again to try to get another  new MRI with a CFS flow by some place in Honolulu if there is one.that recognizes Chiari malformation .Does anyone else have back head nerve snaps all the time?
Aloha
http://picasaweb.google.com/bobdiode/MRIs#slideshow

[selmaS]

Hi Bob,

I was dx with chiari I.....and was recommended for the decompression surgery.Not sure what u mean by back head nerve snaps???

I wonder if u have a related condition.....tethered cord? U said a syrinx was ruled out.....what about EDS??

And I have no idea who ur dr was or how well known in chiari he is, but the herniation is not the most important, it is CSG flow...did u have a flow study done???

I do not have a syrinx...and I have restricted flow.....

There r some NS that do not recognize chiari having symptoms if it is below a 5 mm herniation.Again, not knowing who the dr was u sent ur images to, I am not sure how to suggest ur next move.

This is a frustrating condition to find a dr for...too many NS say they treat chiari, but it is not their main focus......

I do hope other members pop on anad add their comments.

Good luck
"selma"

[sissy114]

Hi Bob,
Let me start by saying that I still don't understand everything about Chiari but I had surgery Dec'08. I was dx with Chiari II, which I think is considered to be pediactric form
of chiari. I just turned 57. The 1st NS did say I was a young 56, maybe that is what he meant. I had problems for more than 16 yrs, didn't have a syrinx but  didn't have much
CSF flow. What kind of symptoms are you having? Everyone is different. I do know that
I saw 3 NS, one said he wouldn't do the surgery, the last one said that the symptoms
would keep getting worse and I felt so comfortable with him and knowing that he had
done Shane's and Lovemygirls surgery, I chose him. I would do it all over again because
I am improving every day. I would suggest that you get more than one, or 3 or how many
it takes to help you decide what is best for you.

Keep us posted and
Good Luck!!!

[sissy114]

while i was rambling on, the 3 or more, opinions, left that out.

[jyojlynn]

Hi Bob
I too have low lying tonsils and only a 2-3mm herniation.  The NS I saw said it wasn't enough to be considered Chiari.  He also said that none of the symptoms I was having were related to the Chiari, as there are NO symptoms to this disorder - LOL!! His advice to me was to go to Nepal and read to small children. No lie.
My GP has done a better job of working with me than any NS I have been to.  I do have the Chiari diagnosis now, but really nothing else has changed except my GP increased my pain meds and put me on a duragesic patch - which has helped a great deal.  
I totally understand your frustrations!

[youngwife]

There is an institute in New York that is very famous for being pioneers in Chiari.  They have some wonderful patient educational videos that every Chiari patient should watch. Understanding and empathy are phenomenal, but education is power. (If after googling, you need my help with finding the link, please pm me.)

Now, Chiari I is not just an adult version of Chiari.  Chiari II can be found in children and adults.  There are significant differences between Chiari I and Chiari II.  Chiari II involves Spinal Bifida.  Chiari 0 and Chiari 1 malformations are caused by a too small base of the skull.  This leads to a compressed hind brain which usually results in compromised flow.

Now, just because he thought you had plenty room for CSF flow, doesn't mean that you have good flow.  A CINE MRI would show (or least give a clue to) whether or not you had adequate posterior and anterior flow.  

A full spine MRI would check for Syringomyelia.  Do you know if you had one of these done?

Now, the image that you posted above is not a mid-line sagittal, which is what most radiologist use to diagnose Chiari.  But, the cerebellum tonsils that they are usually diagnosing by are actually para-sagittal.

From your MRI image, what I can see is that your tonsils look as though they are very 'squished' in  your skull.  In order to accurately diagnose you, one would have to have all of your scans.

You also might want to send Dr. Michael Rosner an email, and include a few images.  He is a Chiari expert, and can give you another opinion to consider.

You are your best advocate.  Don't stop until you have peace with your diagnosis, and a plan for treatment or appropriate observation.

Blessings to you,
Rebecca