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Hi Dr Diana,
I had retinal photography today as I am hoping for some “proof” of CCSVI to present to my POTS or EDS consultants to warrant further testing.
I has lots of tortuosity (think that’s what they called it). Veins/Arteries coming out all zig zagged rather that in a straight line and also my veins and arteries are the SAME size.
There was no beading.The optician had not heard of EDS or POTS so didn’t know what the relevance would be in that setting but said the finding would normally indicate HIGH blood pressure yet mine is LOW!!
Do the findings indicate CCSVI or warrant further investigation??
Your comments would be greatly appreciated 🙂
Melanie.
Hi Dr Diana,
I had retinal photography today as I am hoping for some “proof” of CCSVI to present to my POTS or EDS consultants to warrant further testing.
I has lots of tortuosity (think that’s what they called it). Veins/Arteries coming out all zig zagged rather that in a straight line and also my veins and arteries are the SAME size.
There was no beading.The optician had not heard of EDS or POTS so didn’t know what the relevance would be in that setting but said the finding would normally indicate HIGH blood pressure yet mine is LOW!!
Do the findings indicate CCSVI or warrant further investigation??
Your comments would be greatly appreciated 🙂
Melanie.
Hi Melanie, I’m afraid I would need to SEE the images. Usually, in high blood pressure, the A/V ratio is abnormal, but you say yours is the OPPOSITE of what we’d usually see. And beading? I have NEVER had a doctor see this. You may or may not have it, but images have been sent to me, even by doctors that reported no beading. When I magnified the images a fair amount, BAM! There it was. I ask myself if I would have missed this 20 years ago, too. Yea. Probably. It just wasn’t on our radar at all. We didn’t learn to look for this in school. And twenty years ago, we did not have the technology needed to see what we need to see. So what I’ve found is usually missed, and understandably so. What I HAVE learned, is that I believe we can avoid angioplasty for CCSVI, and do better by treating it medically. Yea. I could not believe how quickly I responded. And I had the dreaded severe “hyperadrenergic POTS”. Gone. Well, as long as I take my medicine… 😉 My son, who was death warmed over for years, too sick to even be tutored at home for three years keeps complaining that he doesn’t need medicine any more. He is FINE. 😉 (I have not idea where he got that stubborn streak.) Of course, he would not be fine without medication, but we have a good handle on it now. I will tell you that after about 2 years, I didn’t need Diamox any more, and was able to go off of numerous medications as I improved (I was so happy to get off of Cymbalta purely because of the COST! Yikes. And who can go off of xanax cold turkey? Well, me. As long as you correct the issue at the source. I still have trouble believing that my need for xanax went away, literally over night. We’re going to see some changes coming soon!! I can hardly wait to get the trials started. Working on it, everyone. Hang in, my friends, 🙂 Diana
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