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leonna20x
07-12-2007, 03:03 PM
Hello,i have been told i have chiari with no compression,and so therefore my symptoms are not caused by chiari,which i know are...Has anybody been told they have no compression? And what happend?
Mom2boys
07-16-2007, 04:36 PM
what symptoms are you having? Is it similar to those noted for ACM? How does one get Dx'd w/Chiari w/o compression? When you say compression are you speaking of the cerebellum being compressed into the spinal cord?

I am new to the ACM Dx and will find more out at the end of the month. I am fortunate to have been submitted to the panel for a case study at the University of Washington and am being reviewed by three chief neurosurgeons Dr Truelove (MD, Cranial/dental UofW), Dr Loesure (Chief Neurosurgeon UofW) and Dr Ellenbogen (MD,FACS and chief of the Chiari Clinic at Harbor View Medical and UofW).


I feel like I am in good hands but neurological pain and diagnosis is so difficult. I don’t know the ACM is going to be a much better Dx than Trigeminal Neuralgia. At first I was happy I don’t have TN but am quickly finding that ACM isn’t better and could be worse in many ways. And that brain surgery may be an ultimate choice I may be forced to make which was the same for TN (MVD surgery). I hope to successfully treat my symptoms regardless of the diagnoisis. I just hope to live a pain free life with as little meds as possible and hopefully no surgery.


OK Now Im just rambling :rolleyes:

L.
Nanna B
07-17-2007, 10:42 AM
Hi Leonna,
I have been told by 3 drs that my symptoms are not from the Chiari, it must be something else, they said. Like I need something else, sheesh.

In June I went to the Chiari Institute, the NL told my that my Chiari was pretty severe.

I am wondering for you, though, could it be that you have enough space for the spinal fliud to flow? And maybe that is why they say it is not compressed? It is so hard to figure out what a dr is trying to say.
Either way I would definitely find someone with expertise to help you figure out what is going on. Don't stop until you are satisfied.

Good Luck,
Nan