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Old 03-06-2014, 07:54 PM #3
Raigne Raigne is offline
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Join Date: Feb 2014
Location: Phoenix, AZ
Posts: 41
10 yr Member
Raigne Raigne is offline
Junior Member
 
Join Date: Feb 2014
Location: Phoenix, AZ
Posts: 41
10 yr Member
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Oh Mimi, I am so sorry your doctor was such a jerk. Go to (if the link doesn't show Google American Syringomyelia and Chiari Alliance Project) to get good information. You should only deal with a doctor who actually knows what Chiari is, how to deal with it, and what options to give you.

Like you, I was very symptomatic. I opted for the surgery because I couldn't deal with the symptoms anymore. The Chiari stuff was fixed, but they also discovered I had Syringomyelia and the spinal cord damage done couldn't be fixed and the syrinx just can't be fixed/changed, etc.

I'm still in the midst of waiting for testing results now. The neurologist that my neurosurgeon sent me to is extremely thorough. I've had MRIs not only on my brain and cervical spine, but on my lumbar and thoracic spinal cord as well. Plus I had the longest EEG of my life last week. LOL Now we wait to get results. My weakness is getting worse, the double vision is happening more often and everything wears me out. I'm hoping THIS time a doctor will figure something out sooner, rather than later. If it is MS they need to start me on preventative meds asap as I'm sinking fast and I don't have time for that stuff. I'm a wife, mom and artist and have far too much to do to let anything get me down.

Please make sure you go find a new doctor. The website I gave will be able to give you options in most areas of the US.

Keep me posted on how everything goes. It sometimes takes me a few days to get back here to check on things, but I will come back to see how you are.
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mimiRN (03-06-2014)
 


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