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I recently stumbled upon and wondered about the Hubbard Foundation. My family is from San Diego (where Hubbard is based) so it stuck out when I saw that they diagnosed ccsvi. I noticed there is a ccsvi conference in san diego being put on by the Hubbard Foundation. Dr. D, is that were you ultimately had your imaging done and read?
I have been recently diagnosed the POTS. I am feeling better most days with medication
Midodrine, Mestinon, Florinef, LDN. What you say about CCSVI causing POTS makes so much sense to me.
Since my illness began, July 2, 2011, I began having daily migraines along with the other symptoms of POTS, the overwhelming fatigue being the most troubling. But I also hear and feel a loud swooshing sound as the blood goes through my neck. Very disturbing sound/sensation.
Without disposable cash on hand, but with good insurance, what is the best way for me to get tested for CCSVI?
Hi, With migraines and fatigue, I wonder if you have external communicating hydrocephalus? Does the base of your head, radiating down your neck hurt? Any nausea, dizziness, sensitivity to noise/light, ear aches, tremors — all worse with straining (valsalva)? That would indicate a need for Diamox. I’ve never heard of a patient HEAR their CCSVI before, but plenty of folks hear the increased pressure if it affects their ears. Hmmm. PLEASE be sure your doctor checks that out, just to be sure it isn’t related to your carotid artery, or cavernous sinus, OK? To be checked for CCSVI (although I wouldn’t recommend TREATING the CCSVI, especially if your cytokines are not yet under control) you can have an fMRI (likely the most reliable test — just google fMRI CCSVI locations), but an MRV will usually also show it (but the radiologist won’t be able to tell you — the images must be read by someone familiar with CCSVI), and in an experienced hand, a sonogram can usually pick it up — especially if there is blood flow BACKWARDS in the vein. When I went to be evaluated, I knew I wanted Dr. Haacke to read my images, so I googled him and the Hubbard Foundation to get started. Then I SPOKE to the interventional radiologists and researched the centers to find out who had the most experience, etc. Yup, nothing replaces a little bit of homework! Let us know, OK? 🙂 Diana