Emma is pretty much in the same position as you. Although we found that atlas and jaw work alleviated a lot of problems previously grouped in with MS.
Dr Diana's reply on the Dr S thread was:-
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.
Now my non medical mind had reached the same conclusion as her - lack of incoming oxygenated blood cause by poor drainage is troubling the eyes. In a nutshell.
It just seems so logical.
Dr Sclafanis response to my question earlier is:-
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
I'm not surprised to be honest. When Dr S doesn't know - he says he doesn't know and I respect that more than taking a wild guess.
I would really like to get someone of Dr S's mindset working with eye people - I'm not convinced the eyesight improvments are anything neurological based whatsoever but purely vascular. After all it isn't beyond the realms of possibility that Prof Zamboni has accidentally come up with a procedure to help eyesight issues whilst searching for relief of MS Symptoms. It sure wouldn't be the first time medical breakthroughs had been made in this way.
Ultimately to us this now comes down to cost sadly. I'm not going to enter a theoretical conversation about "worth" - it's a specialist procedure with limited availability and it has a price attached to it, it is what it is.
We have a history of improved eyesight from Emma's first procedure which, with the wonderful benefit of hindsight, was an undertreatment in Scotland (and rightly so - that is not a criticism).
So for £2000 would we go for a second procedure? Yes, I wouldn't even be asking we'd be booked in.
But it's not. Being in the UK our locality is no longer offering procedures so we need to travel. If we wanted to undertake the CCSVI procedure again we'd really want it to be Dr S performing it. So we have to travel to the USA on top of the procedure. This is when it mounts up and realistically it will cost us £12,000.
Now I'm of the opinion that your health is worth more than money, so I'm not averse to paying to go. Apart from one small problem - I don't have £12,000 and we'd have to borrow it or sell our car - or similar.
Then I start thinking, what if this works and lasts for another 24-30 months and we need to do it again - we won't have finished paying for the previous one.
Herein lies our dilemma and the fundamental reason we'd really like someone with an interest in Eye's and their mechanisms to really get stuck into this with someone like Dr S.