internuclear ophthalmoplegia, one and half syndrome & CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

internuclear ophthalmoplegia, one and half syndrome & CCSVI

Postby EJC » Sat May 11, 2013 3:46 pm

Internuclear ophthalmoplegia(IO) (right sided) + one & Half syndrome.

Yep, I had to google both of those too.

This is the latest fun diagnosis Emma has had for her ever worsening eyesight issues.

She's had all sorts of wonderful improvements since starting treatment with Dr Amir that I guess it's only fair that something else goes wrong somewhere!

This latest diagnosis was made last week by a consultant Opthalmologist at our local hospital. Hat's off to the guy he did actually thoroughly test Emma rather than the usual "It's part of her MS" diagnosis.

Every time we discuss eyes, my mind automatically jumps back to the improvements Emma and so many others received on the table during a CCSVI procedure. There must be a link. So when I asked the consultant what the cause of IO and his answer was vascular and nerve issues I was jumping all over the vascular bit and straight into a discussion about CCSVI and how so many people have had vision improvement.

He'd never heard of CCSVI but for a delightful change was open minded and willing to absorb and listen and promised to go away for the holiday weekend and read up about it.

I gave him details of this forum and suggested if he had any questions that Dr S was the oracle as far as TiMS goes.

So Mr Kumar, if you're reading this thread thanks for being open minded and at least having a look at CCSVI and it's possible connection with IO and other problems.

If anyone else has any experience of the IO diagnosis please chip in. In the meantime I'll update once we get any more info at this end. Next appointment in one month.

There is possible treatment for this condition by means of a botox injection to the muscle in the offending eye, the thought of which makes me cringe!
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Re: internuclear ophthalmoplegia, one and half syndrome & CC

Postby CureOrBust » Sat May 11, 2013 7:31 pm

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.
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Re: internuclear ophthalmoplegia, one and half syndrome & CC

Postby EJC » Sun May 12, 2013 1:05 am

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.


So far nothing has been discounted. In the same way I ask specialists to be open minded I try and stay the same way.

We have a further consultation in a months time and we'll see what that brings.

IO is not uncommon in stroke patients (immediately after a stroke) - hence the strong vascular connection.
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Re: internuclear ophthalmoplegia, one and half syndrome & CC

Postby CureOrBust » Sun May 12, 2013 5:58 pm

I do hope it resolves quickly. Good Luck.
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Re: internuclear ophthalmoplegia, one and half syndrome & CC

Postby EJC » Mon May 13, 2013 2:04 am

So many people report eyesight improvements with CCSVI treatment and the connection to why this is still seems unclear.

So I figured instead of asking the IR's for the answer I got the opportunity to ask an eye specialist.

The question to ask isn't "why does CCSVI treatment improve eyesight" but a more generic "why does a procedure to improve flow through the IJV's renal veins and azygos veins create improved vision in so many patients?" That removes the contentious medical procedure from the question and asks a direct anatomical question.

Hopefully we get someone looking at the question from the other side of the fence - and that can only be a good thing.
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Re: internuclear ophthalmoplegia, one and half syndrome & CC

Postby EJC » Sat Jun 15, 2013 5:39 am

So this week Emma visited an orthoptist at our local hospital to see if they could tie down the issues of her eyesight.

After a 15 - 20 minute exam she was diagnosed with http://en.wikipedia.org/wiki/One_and_a_half_syndrome.

It was then explained to Emma that there really is nothing that medicine can do to help this condition. Botox injections into the offending muscle behind the eye may or may not help and may or may not last a matter of weeks/months before repeat injections are required.

This is a blow, Emma had physically improved so much with Jaw and Atlas treatment from Dr Amir that finding regression in Emma's eyesight is frustrating.

Her last visit to see an opthalmic surgeon was coincidentally only a few weeks before Emma had CCSVI treatment in Scotland in 2010. Having read the notes on Emma's condition back then the orthoptist said she had returned to her pre CCSVI treatment level of eyesight.

This now brings up the obvious question in our minds. Do we now repeat the CCSVI procedure purely looking for eyesight improvement?

This is a big deal for us now as the procedure is no longer available in the UK, so our clinic of choice would be Dr Sclafani based on his standing within CCSVI and his contribution and willingness to communicate with patients on here. We also need to beg and borrow the money to do this - so cost is the number one issue for us.

When Emma initially had the CCSVI procedure in 2010 the eyesight improvements were the single biggest (and unexpected) improvement. The effects of this procedure lasted a little over 24 months before reappearing and 30 months before returning to pre procedure levels.

Emma was patient number 39 in Edinburgh, this was the infancy of CCSVI in the UK and pretty much worldwide and at the time they were being, quite rightly, cautious in treatment. To that end it is reasonable to assume that based on knowledge available now that Emma was under treated and that a repeat procedure may offer similar and hopefully more permanent improvements.

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.
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Re: internuclear ophthalmoplegia, one and half syndrome & CC

Postby Cece » Sat Jun 15, 2013 10:27 am

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.

No, that's not mad, because it worked once.
Besides the eyesight getting worse, is there any reason to believe the veins have restenosed?

My eyesight improvements have continued, knock on wood. It seems that the venoplasty did something but what exactly? Improved venous drainage of the eye, since those veins flow into veins that flow into the internal jugular veins that were previously congested? If 1 1/2 syndrome is neurological, then it could be reversible or irreversible. If it's vascular then that too is either reversible or irreversible. A lot of help that is, sorry. Good luck with any decision. In the best of worlds, this would be covered under NHS, and fully researched to know exactly what the odds were of venoplasty helping eyesight in her condition. In the current world, it's speculation and what we have to go on is that the eyesight responded to the procedure last time around.
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Re: internuclear ophthalmoplegia, one and half syndrome & CC

Postby EJC » Sat Jun 15, 2013 12:35 pm

It's worked once so it may work again is my logic - but there's no guarantee with these things. I think it's certainly a positive indicator though.

Each time we find ourselves in front of an eye specialist I ask them how improved blood flow (drainage) may help ease these eyesight problems.

I try my hardest to phrase the question in a way that doesn't include the letters CCSVI, in an attempt to remove possible prejudice.

I've had a range of answers from "I don't know" to "it's placebo you just think you can see better", but the most common suggestion (and that's all it is - a suggestion) is that improved blood flow and oxygenation of the muscles controlling the eye is easing the issue.

Here's an idea - maybe CCSVI is actually a procedure to help eyesight issues that also happens to alleviate some other symptoms historically associated with MS.
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Re: internuclear ophthalmoplegia, one and half syndrome & CC

Postby dlynn » Tue Jun 25, 2013 8:37 am

EJC,
I noticed that a few of the eye conditions, from the link you provided, are possibly caused by ms. If CCSVI is related to ms, and all other
possible causes have been ruled out... I wrestle with this decision also. My eyesight had improved after my first procedure along with other symptoms, heat intolerance, fatigue, pain, balance etc. All my symptoms came back approx. 2mos. ago starting with vision,
"flashing lights" in the early a.m. then it subsides within an hour. My main concern this time is proper blood flow, I don't want to lose anymore function. I believe that if my blood flow is restored, my body will have a chance to heal and if it alleviates my symptoms, then,
I thank God! This is such a big decision. I wish you and Emma the best.
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Re: internuclear ophthalmoplegia, one and half syndrome & CC

Postby EJC » Tue Jun 25, 2013 12:11 pm

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:-

drsclafani wrote:
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

DrS



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.
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