- This topic has 4 replies, 2 voices, and was last updated 3 years, 5 months ago by .
- You must be logged in to reply to this topic.
I am new on here 🙂
I have EDS and POTS (and probably MCAS) and had a MRI in october as I seem to have developed an esophoria (divergence insufficiency). The neuro opthalmologist wanted to check for causes of CN 6 palsy, amongst which a Chiari malformation.
Long story short , i moved countries so have the MRI and the radiologist report (all clear) but couldnt attend the follow up appointment and will now have to wait until I have insurance here.
Attaching a couple of screenshots, if anyone has any insight ☺️
Yes, see the post I’ve just replied to, I think you might have the same.
Any instability in this area could be causing a ‘pincer’ action on the underlying brainstem/spinal cord, see the 2 dots.
This could cause turbulence in the flow of cerebro spinal fluid, as well as irritate the underlying brainstem/spinal cord.
Whilst you’re waiting for further appraisal, my advice would be to wear a Philadelphia collar (with linings!) 24/7. Persevere with it (because it is cumbersome) but notice the improvement, some might be immediate and other symptoms will subside over time.
I have compared various collars and braces on this post:-
It will give you more insight on what works and what doesn’t (my problem is similar to yours)
Thank you so much for your thorough reply 🙂
I will take a close look at the links.
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”
-- Chris Gross