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What exactly does this mean ? Chiari Malformation

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Unread 04-23-2010, 10:02 AM   #1
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Unhappy What exactly does this mean ? Chiari Malformation

Hey there!
My name is Michelle, I'm 17 years old. I was recently hospitalized for three days for stroke like symptoms. Many tests were done and my MRI results came back stating:
My MRI results came back as
"There is a Chiari one malformation. The cerebellar tonsils extend about 1.6 cm below the foramen magnum."

I am suffering from all of the main symptoms of Chiari and saw a neurosurgeon who seems to think it isn't my Chiari (but didn't even look at my MRI's. When I was younger I also had pseudotumor cerebri. He's sending me for MRA's, as well as EEG's. This neurologist seems to believe it's because a condition with my heart (PFO) and I see the cardiologist this Monday. I do go to see a neurosurgeon in about 2 weeks...
Is there anything I can expect or look forward to?

Thank you!
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Unread 04-23-2010, 10:15 AM   #2
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Sorry, small mistake... I saw a neurologist not a neurosurgeon.
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Unread 04-27-2010, 04:48 PM   #3
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Hey Michelle,

The results you describe indicate a fairly significant Chiari herniation. I had a 10mm (1.0 cm herniation) and was suffering daily. I had cranial decompression and most of my symptoms were relieved for about 5 yrs. I did have scar tissue buildup from so many yrs undiagnosed that I believe is causing residual symptoms sometimes.

My best advice to you is to trust your own instincts.

Spend some time daily with a calendar or a journal and track your symptoms. I found that any symptoms I did or do still have are exacerbated by my menstrual cycle or illness or lack of sleep, etc.

I saw 3 different drs before I was comfortable with the neurosurgeon who treated me. 1 told me it was a "stress disorder" (HA- of course i felt stressed, my brain was squeezing into my spinal canal). The next one who by the way is a revered neurosurgeon in the area, told me "Yes, you do have a Chiari but I don't believe your symptoms are that severe". I asked if he had ever had the sensation that his eye could blow out of his head at any moment? He said he would prefer to see me again in 3 months. I fired him too.

My 3 doc was very gentle and patient but still waited 6 mos or so before surgery to see if I continued to herniate. I went from an 8 to a 10 mm then he agreed to surgery.

Sorry for the length but I just wanted you to know that you have to be strong and believe in yourself. Only you know how you feel and you have be detailed and persistent to get the care that you need. It is always great to take someone with you who can also advocate for you.

Good luck and I'm here if you have questions.
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Unread 05-03-2010, 11:57 AM   #4
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that is where you went wrong . Neurologist dont knosw about chiari . you need a neurosurgeon and one that is a specialist in chiari . where do you live.
Remember That Life Is Short!!!" break the rules, Forgive quickly, Love truly, laugh uncontrolably, And never regret anything that made you smile
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Unread 05-06-2010, 01:30 PM   #5
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A neurosurgeoon will do a CINE MRI,, if he deosnt know what that is,, run from that guy,,, CINE MARI shows spinal fluid flow,,, and even thugh you have a Chiari,, it may not be casuing any symptoms,, do not run into surgery,, its not fun,,, no fun at all,, again,, if you are not having symptoms,, do not get this done,,I did and am worse off for it,,, all I got was well we tried
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