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I have read many of the posts and I am happy to find other people who suffer from some of the same symptoms that I do. I have noticed lately that sometimes whem I get a shooting/zapping pain from the back of my head to the front my tongue curls and freezes up for about a min and I can't talk. Has anyone else evr had this happen?
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Avatar_universal
I get something similar. some times when I turn my head or look up etc. I get the shooting/zapping pain but everything goes black. basically it feels like I'm on pause. I can't talk ,see , I don't want to move for fear of falling. trying to hide these episodes are hard. one nasty lady at work is telling everyone I am a drug addict. i have many other symptoms. but ur not alone or crazy! my herniation is only 3mm and I have neck trauma. and nerve damage.
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620923_tn?1452919248

  Hi and welcome to the Chiari forum.

I personally never had that exact symptom, but we r all diff, and will have diff experiences with this condition.....but many times we have something very similar, but affects us just a bit differently. The same issue is causing it, just in diff locations of the body.

There have been times where I felt frozen and could not respond...and it is not something that goes un noticed....

Have u been able to locate a true chiari specialist?

  "selma"
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1616310_tn?1298594551
My herniation was 4mm in 2005. I am going for mri in March to see if there has been any change.  My symptoms come and go and the list is long but when there are multiple symptoms present at once it is the worst feeling in the world. I get very embarassed when these weird things happen in front of people I don't know. People can be cruel. Thank You for replying to my post.
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1616310_tn?1298594551
I do not have a specialist right now.
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620923_tn?1452919248

  Hi...Chiari is known for symptoms that cycle so the fact that urs come and go and can get worse at times is very typical.

Well, know u r not alone here..we all understand : )

Have u ever been checked for a syrinx, tethered cord, Ehlers Danlos...sleep apnea or other chiari related issues?

  "selma"
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1616310_tn?1298594551
I don't think I have been checked for any of those. I am in the Boston area and have appointment with a Dr. Thaler at Tufts Medical. I am looking around now online to see where the specialist are in my area
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620923_tn?1452919248

  Well do check all the drs out, ask many questions....and go with ur gut as well as the info u obtain from ur research.

There r many drs that will do chiari surgery, but not all do them on a regular basis and r as experienced....so try to get one that  is well experienced.

Let us know how else we can be of help : )

"selma"
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Avatar_universal
Hi All,
I am very new here! Just got somewhat of a diagnosis last week.  My regular doctor thought it was a brain tumor, so he sends me for an MRI.  Turns out, I have low lying cerebral tonsils.  That's all he tells me.  I do have an appointment with a neurologist tomorrow morning.  Very nervous.  I am in MS, so I do not think there are any specialist around.  
I am enjoying reading all the post.  This is soooo new to me!  I've been treated for EVERYTHING in the past 7 years, only to find out this is the culprit.  
Glad I found this group! :)

"c"
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