CureOrBust wrote:do not discount that it could actually be "an MS thing" too quickly. A lot of what I read appears to reference MS and brain lesions.
EJC wrote:Would we be mad considering a CCSVI procedure simply to deal with an eyesight issue? This is a £10,000 ($15,000) punt on solving the issue. If it works it's money well spent, if it doesn't we'd be pretty frustrated.
DrDiana wrote:Hi EJC,
I'm not sure what you mean by eye "syndromes", but I know that many people have brighter, clearer vision even on the table when they have their CCSVI procedure. I *think* it is from two mechanisms:
1) The same hypoxia that affects the brain also affects the eyes. We can see that when we look into the eyes. The arteries are too small, and the veins are too big. I had conjectured that endothelin 1 may be the cause of the arteriole constriction, but I'm considering other things, too. If venous blood is not flowing out (and often times CSF is not flowing out), something's gotta give, right? The skull is fixed. So either the brain gets squished (and sometimes a Chiari begins), or easier, the arterial blood has a harder time getting IN. So the vision dims. If angioplasty allows more venous flow OUT (or you do something to allow more CSF out), more oxygenated blood can go IN, brightening the vision immediately.
2) Blood thinners: this is one reason I ask the question. Most patients with EDS end up on blood thinners, and we get strokes easier (ditto M.S. patients). If we have narrowing, partial blockages, etc of venous blood outflow, do the blood thinners allow more blood to exit easier? I didn't get any effects from angioplasty beyond feeling clearer headed for a few days. My son received no improvements. BUT we weren't given blood thinners post-procedure. We are on them now and doing well.
I DO see a fair amount of adult onset strabismus (an eye turns, usually inward). Is that the syndrome you are talking about? High intracranial pressure can cause a palsy of the lateral rectus. Because EDS patients are loosey-goosey, we often wear soft cervical collars at night to allow for continued CSF drainage. Many of us use Diamox (it lowers the amount of CSF produced) to correct the symptoms of hydrocephalus -- including eye turns.
Hope that helps.
That is not an easy question. Worth is something that only you can judge. Obviously, for a radiologist one's vision is priceless. The wonderful ophthalmologic response to angioplasty was very impressive. I am not sure of mechanism of neurological restoration. was it improved csf drainage or improved perfusion? Can we anticipate the same result? Impossible to predict. Better, worse no change
Let's not get into the fee speculation
So i guess i cannot answer your question for you
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