- This topic has 2 replies, 2 voices, and was last updated 8 years, 6 months ago by .
- You must be logged in to reply to this topic.
Some feedback about The Driscoll Theory, and Dr. Diana addresses the question of CCSVI — to treat or not to treat. All disclaimers in place! Be sure to check with your doctors. A must see! http://www.Prettyill.com
What is the name of this video? I’m having trouble finding it!
I see my neuro in a month and want to address CCSVI with him (just for a diagnosis; patiently waiting on your research!). He’s (finally) on board with letting me direct our research (since his words twice now have been ‘I don’t know where else to look; you should see a neuro in a teaching hospital’). He’s given me Diamox and just ordered some labs to check in MCAD, and has already given me a script for Gastrocrom.
What should I ask for? fMRI, doppler?
I had to take that video down to regroup, Hon. It seems that a lot of people thought that CCSVI equals “I must have angioplasty”. Yikes. Most of us deal with vascular inflammation that got us into this place to begin with, and many develop anti-phospholipid syndrome, deal with MTHFR gene, livido reticularis and other vascular issues. I am working on “work arounds” so that we don’t have to have angioplasty which may set us up for thromboembolism.
More information coming!
Knowledge is power — an fMRI or doppler (or an MRV) will tell you what you need to know. If you go doppler, be sure the operator has lots of experience, OK? But no matter what they find, nor how many people get some symptom improvement, we WILL have a better procedure to “fix” this. Hopefully, we won’t need to wait very long!
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