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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: retroflexed odontoid

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › CCSVI › retroflexed odontoid › Reply To: retroflexed odontoid

April 24, 2014 at 5:36 pm #4990
decompressed
Participant

Thank you for responding Barbara!!
No I didn’t have a fixation surgery, I didn’t even know of such a thing when I had my decompression surgery. The NS assures me that my symptoms are not related to the Chiari because there is sufficient flow at the decompression site. It seems to me though that some of my original symptoms are worse now than before surgery (ringing in ears, headaches (pain and frequency) and neck pain, nerve pain. Plus now the swallowing is an issue as well as insomnia, heart palpitations, dizziness, balance…

What do you mean instability? How can you tell? Is that what makes a retroflexed odontoid? Or is that separate. I’ve been trying to figure out how to measure the odontoid. I found a pretty good study online that shows a Grabb-Oakes measurement, when I follow that and measure the MRI from 2012 it was 9.3mm and the one from this year is 11mm. I may not be measuring right, but did measure both images the same. Is it normal for it to continue to worsen?

Until October, I was cycling 20+ miles per day and enjoying long rides on the weekends. I’ve never had heart issues and aside from this am relatively healthy. I’ve also noticed weakness in my arm strength and my legs feel sort of heavy, but I was figuring that was atrophy from not being able to ride/exercise.

Thank you again Barbara! Your response and help is very much appreciated!!

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