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I am very happy to have found this forum, the lovely Dr Diana, and you guys!
How refreshing it is to see a doctor who is enthusiastic about research and empathic about living with chronic poorly treated illnesses but still wanting to further science by not giving up. It’s like watching an angel!
From watching the videos, I like the idea of CCSVI as a possible cause of so many of our neurological and neurovascular symptoms.
So I am keen on trying to get some tests done. :p
Could someone possible let me know any tests we can do, preferably non invasive?
(Or is that impossible). Eeeeek.
I had a test when they press the probe on your neck (to assess risk of stroke I think?) and that was normal. But that was only one test.
I know there are more tests, probably even a 640-Slice 3D colour CT scan might help? Before trying that, I was thinking something along the lines of a Transcranial Doppler (TCD).
As you can see I am guessing.
Many thanks for any ideas!
Hi POTS, my wife was tested for CCSVI at Stanford and the Hubbard Foundation in San Diego. Those facilities both use a functional 3T MRI/MRV/MRA to image the anatomy of your vessels (with particular focus on internal jugulars and azygos), but also test the flow of blood through those vessels as well. Stanford, and others, also perform an ultrasound of the neck area, not transcranial. There are some facilities that use only MRI or only ultrasound. I am not aware of any that use CT, but I haven’t looked everywhere.
there’s also intra-venous ultra sound and plain old catheter venography too.
also, correcting myself, i think CT scans actually are used to see if the atlas of certain spine bones are causing a narrowing of the vein as well.
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“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