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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: Jugular Valves

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

September 16, 2011 at 12:16 pm #1475
Chicken Boo
Participant

Hi Chicken Boo, IJV valves! My thoughts honestly, vary with the tide of information. You probably know I just spoke at the National CCSVI Society meeting in Canada, so I got to rub elbows with the best, and we are learning as we go. My IJV valve was faulty on my right side and I had a large IJV (“garden hose”) on that side. And yuck, I can FEEL the reflux (on both sides to some degree), so I was fine with the IR ballooning that valve to toast (an 18mm balloon). But I wasn’t on mast cell treatment at that time, and now both IJV’s ache a bit (9 months later). So I wonder about an endothelial backlash with an immune reaction now. There is so much we don’t know yet, but my gut is telling me to open the valve and take all precautions to avoid an immune response (including mast cell treatment and rigorous trigger avoidance) before and after treatment. Next week, I may have a different answer! ha

Hi Dr Diana,
Mast cell treatment, must admit I don’t know much about that so will have to look into it 😉

I do not have significant reflux (but I have *a little*) in my veins but I often getting fluttering/pulsating sensations roughly where the valves are (mine are assymetric). I always thought I was getting some sort of strange sensations in my thyroid gland but now I realise it’s vein/valve related.

What did they do to modify your valves? If anything?

Have you read about Dr Zamboni’s new thoughts on the valvulotome for the IJV? I feel this is heading in the right direction… For me personally I do not have MS so I guess I can currently say there’s no doubt in my chicken and egg scenario (no pun intended!) so WHY am getting stenosis – my money is on faulty valves due to hypermobility.

And the possibilty of Lyme – still 50/50 on that one.

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