Here's a kick in the head...

[jyojlynn]

So, as many of you know, I have been getting ready to go to see the Chiari NS spec on Monday.  In prep for this appt, I went to pick up all of the films I have had done for the past 7 years.  Just out of curiousity, I read the reports that had been written that went with my films.  There wasn't a report with the 2000 report, but this is what the 2005 said: "Patient has low lying cerebellar tonsils but in my opinion does not meet the criteria for Chiari 1 malformation".  Every report afterward said the same thing, except that it never mentioned Chiari again, just low lying tonsils.

I couldn't believe it!  In the radioliogist's opinion?  So because of this man's belief I have suffered all of these years without a diagnosis.  Please, please pray that the NS doesn't say the same thing.  I am so afraid that he will dismiss me due to what this radiologist said.  I just want to scream and cry and have a tantrum - all at the same time.  Sorry for the negativity, but it just really hit me very hard.

Joy

[Shane99]

Yeah, I agree. It's a shame that so many people have to fight to be believed.

I've read that somewhere around a .5 of a percent of the population could have low level Chiari, call it Chairi "0". If I'm doing the math right, isn't that 1.5 million Americans? Now, I'm sure they don't all have symptoms, but enough do that it shouldn't be ignored as a cause.

I don't normally think Chiari "0" causes syringomyelia, but it can effect other issues, like memory, concentration, vision, headaches etc.

[jyojlynn]

I found this article stating that the defining of Chiari is too restritive.  Here is an insteresting study that has been published:

http://www3.sympatico.ca/ejfs/chiari0pubs.html

Maybe that will help others as well.

[jyojlynn]

Thanks Shane, I will do some Internet searching today looking for Chiari 0. I'm not sure how I could have this many symptoms at a level 0 while others have no symptoms at a 1.  Weird.

Joy

[Shane99]

Not defending anyone, but basically - as I understand it - Chiari "0" is if the herniation is less than 5mm. It's apparently a fairly common occurance. Most radiologists and neurologists just don't think anything less than 5mm will cause symptoms.

I know that that's just not so, but that's what my neurologist explained to me when I asked him that very question.

This is why it's so very important to go to a specialist. They understand that smaller herniations can cause symptoms.

I would suggest you specifically mention that Chiari "0" can still cause symptoms to all of your doctors - try and find a hardcopy of a doctor agreeing or something where a Chiari"0" patient was treated because of symptoms.

[selmaS]

it is unfortunate, but a common occurance. If the radiologist is not familiar, or not looking for chiari it can be overlooked!
On one of my reports it says "CMnwith cerebellar tonsils extending 6mm below the level of the foramen magnum which is just above normal limits of degree for a patient of this age"
what does that mean...everyone has chiari?? Radiologists and their interpritations can impede getting proper attention and treatment.

I am a big advocate of asking for copies of all reports,labs and films, CD's....and even tho u may not understand the verbage, read over the reports and ask ?'s......if the dr doesn't work with u , find a new one.....am I am not say self dx, but u have to have an active role in ur health care.

I've been to 2 diff NS and am getting ready to see a 3rd.

the big key is the NS MUST be a chiari specialist.

Joy- even if this dr gives u the brush off- maintain ur mission- to find an expert so u may get proper treatment.

Good luck
Godspeed
"selma"

[lor124]

my MRI said he same thing. I went to the NS and she sent me to a headache specialist for aggressive treatment for migraines. She wants to rule that out before she considers surgery. The headache specialist has sent me back to the NS stating it's not migraines. The NS said she could do surgery on "normal" brains all day but she would rather not. I didn't really like her bedside mannor but I was told she was good. Has anybody ever heard of Dr. Gail Rosseau in Chicago?