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Old 07-14-2009, 12:21 AM #31
wild-at-heart wild-at-heart is offline
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Default That's me...

"She basically gets extremely fatigued to where she can barely walk, she has seizure like episodes, poor memory, speech and coordination problems..."

They tested me for MS and lots of other things too and found nothing for 7 years. I have a chiari type 1 and syringomyelia. See a neurologist until they figure out what it is that's going on.

Tell your wife, I know how she feels. Those were my symptoms. Not "seizures" but points when outta nowhere my eyes would cross to where I couldn't see and they would shake...I'd go ghostly white, then red faced...cold sweats...my muscles quivered...I couldn't walk or stand...lost ALL sense of equilibrium...sick to my stomach...slurred speech...poor hearing...absolutely no sense of pain except that my head hurt so bad...and I have the speech problems, coordination issues, and some really hardcore memory stuff.

From the symptoms, I would think have chiari checked for. I'm not a doctor, though, I can't diagnose. As a last thought, if it IS chiari...the decompression surgery isn't that bad. I had it...put me out of commission for about a week and a half...after three days, I could do things, just tired and really stiff. But it helped EXCEPTIONALLY. I might have a "seizure episode" about once every 5 or 6 months when before it was at least once a week. And my coordination has gotten better and I just FEEL better. So if that's what it is, have the surgery. It's so much better than before.

Anything else I can answer, please ask.

Good luck and God bless.
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Old 07-19-2009, 10:13 AM #32
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Default I looked at the MRI

Quote:
Originally Posted by dfaulk View Post
Okay...here is a few shots from a different angle. Does this look like possible CM1?
I am a doctor of Chiropractic who also has C1M and am looking for answers. I looked at all of the views of the MRI and would say that there IS what we would consider "crowding" at the foramen magnum ( the hole in the base of the skull). She probably also had this MRI laying supine, right? Well what happens when she is standing with the weight of the brain pushing downward? Go to the Mayo clinic website and look up Chiari 1 Malformation, and diagnosis, it will tell you exactly what studies are needed to confirm the diagnosis. There is a very good Chiari Center in Aurora Colorado as well.
Good luck to you and your wife!
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Old 07-19-2009, 12:40 PM #33
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Mayo Clinic is not the place to go for Chiari . There are many Chiari specialist all over the Us . where do you live so that we may help you find the right dr.
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Old 07-14-2010, 08:03 PM #34
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Quote:
Originally Posted by dfaulk View Post
Okay...here is a few shots from a different angle. Does this look like possible CM1?
we too are looking for a dr in louisiana for my 15yr old, but no luck. What clinic in houston actually helped your nephew.
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Old 09-20-2010, 07:14 PM #35
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Quote:
Originally Posted by dfaulk View Post
Okay...here is a few shots from a different angle. Does this look like possible CM1?
not a doc but looks like slight chiari compared to my daughters 6mm; we are in same boat, desperately searching for chiari specialist in florida, we live in sarasota, and my daughter has already been to all childrens in st. pete; to no avail! i cant believe we came home with continued pain; and no recommendations for chiari specialist; they recommended narcotics as the next step for my 14 yr. old. I will continue to search for a chiari specialist; anyone out there from florida? we are our children's advocates...
good luck to you.
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