Chiari Malformation Community
What Now?!
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What Now?!

NS nurse called and we had the following conversation:

NS.: I want you to see (NL) because there are several tests that need run before we can decide that surgery is what you need.
Me: Several?
NS.: Yeah, Many. A lot.
Me: Oh yay.
*sigh*

Now I'm having my fifth MRI in 2 months soon and an EMG.  What tests can they possibly want to run.  I do know they already ruled out the MS but the NS wasn't happy that the NL didn't do a spinal tap to rule it out.  I will NOT let them do a spinal tap.  I've heard that can make the Chiari worse.  I am so frustrated.  I just want to be fixed!
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  We all would like to be fixed, but that is not possible...we were born this way.....and surgery can make things worse if u 1- do not have the right dr and 2- if u do not have the right dr!

Tests r needed to know just what all is going on...regardless of having chiari with symptoms not everyone is a surgical candidate.

Did they do a CINE MRI?

MRI of ur thoracic and lumbar spine?

A LP can be done if medically necessary, but to rule out MS is not medically necessary...but, they can be done  as long as the tech knows u have chiari and to draw slowly....so if u have a good tech it can be done safely....not that I would want to have it done...it can be, but we should try to avoid them.

I would have the tests, and get copies of all of them reports, CDs all of it and get another opinion and go from there.

This is a very frustrating thing to deal with and most Drs and their staff do not make it ne easier for us.
  "selma"
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