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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: stents and more

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › CCSVI › stents and more › Reply To: stents and more

July 1, 2015 at 6:17 pm #5568
Dr. Diana
Keymaster

I’m so sorry for your predicament. It is not entirely clear to me what exactly is happening, but I had a couple of thoughts/comments. First, when you say her IJV’s are compressed, what is compressing them? Is it really a compression, or is it a blockage (usually a clot) or have the IJV’s collapsed (they can collapse from high ICP itself)? If they are compressed by *something* (tumor, bone?), the something may need to be removed. Does that make sense? I’m not sure where you live, but here in the US, I don’t think anyone is stenting these veins — the FDA warns of the dangers, and treatment for clots needs to be treated completely differently, of course, if they are blocked for that reason. Many times these veins open right back up when the ICP is reduced — they appearance of collapsed veins is sort of a red herring — not the cause of the problems. When you say she has evidence of edema — do you mean papilledema? If so, medical treatment is always preferred, if there are no tumors, etc causing the problems. Options include Lasix, steroids, weight loss (if part of the problem) and perhaps changing her Diamox dosage, timing, CO2 levels, etc. Some doctors will also try Octreotide. Has she always had these problems or are they due to something else? If due to something else and if the cause can be addressed properly, high ICP is usually temporary (also encouraging medication as opposed to surgery). This takes a careful evaluation, clearly, but CAN be done. 😉

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