This Is MS Multiple Sclerosis Community: Knowledge & Support

Its all about the valve
by Mike Arata on Wednesday, August 31, 2011 at 10:20am

Why we can all be thankful that CCSVI is a valve problem.

Early in the lifespan of CCSVI treatment narrow areas of the jugular and azygos veins were treated with balloon angioplasty. Pioneers like Dr. Zamboni described ho this helped patients. Unfortunately half or more relapsed shortly after treatment. This relatively poor outcome was not unexpected as it is well documented that balloon angioplasty of native veins is a limited treatment.

Treatment of compressed veins with stenting has been shown to be quite effective. In the iliac vein a stent can have a 5 year patency of over 90%.

Thankfully we have come to realize that the abnormality causing CCSVI is not a narrowing of the vein but rather an obstructing valve. When this treatment fails it has been described as restenosis. This is an inaccurate description in most cases. A better term would be recoil. The valve is stretched but then bounces back. New treatments should be aimed at valve disruption. Attempts to modify restenosis have little applicability in CCSVI.

The key thing to remember is if veins are ballooned open. More often than not they will close again. Fortunately the jugular and azygos vein problems of CCSVI are very unique in the body and are a result of an abnormal valve. Balloon disruption of the valve appears to have much better patency than balloon dilation of a narrow vein.

Unfortunately, as Dr. Haacke and Dr. Sclafani will both tell you, there are many variations, all caused by congenital problems that make everybody's veins different. I think the older you get the more different they may get. It isn't always any one thing. That's what makes it hard to treat. If you only have valve issues, lucky you.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I have assymetric valves, I wonder how these could be treated. My gut feeling has always been that the valves are the problem.

I wonder how many MSers have EDS/hypermobility and don't even know it - strong link with valve problems there...

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Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.

Previously, when Dr. Arata was talking about balloon disruption of the valve, it meant tearing the annulus or the ring of the valve. If this is still what is meant by this term, then he is comparing two things: tearing the valve and ballooning the vein elsewhere other than the valve. Why is he not comparing tearing the valve with ballooning the valve? The latter is what the other researchers are doing.

Cece, I hope this quote from Dr Arata answers your question.

Mike Arata
"simply put, we break the valve. The valve is like a seal covering the opening. If you stretch a rubber seal it will bounce back. If you tear it it will stay open."
September 1 at 9:04am

Thanks, dania. Maybe there is some research support in google scholar for the tearing of valves elsewhere in the body, with good outcomes. I will look.

There is still no reason for this comparison:

Because there are no IRs doing the latter, in the treatment of CCSVI.

Does anyone know if he is keeping track of outcomes or putting together a CCSVI study? Awhile back, I thought I heard that PI had plans for this, before PI became Synergy. It would be good to get some data to support the claims, so we'd know if he was onto something with this.

I've appreciated the reposting of his statements, even when I disagree.

I've often wondered if breaking the valves in that way would stretch the vein too much or damage the vein walls.

I wonder what his views are on cutting/trimming the valve leaflets?

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Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.

He did say "appears" to have much better patency ...
At least, now, there is discussion about valves and the role they play, unclear as it might be. When I had my first procedure in June 2010, all they were doing back then was angioplasty. And when that alone, is done it "seems" most people restenose". We are all along for the ride on this learning curve. Some of us have paid a very high price being guinea pigs.

Cutting or trimming the leaflets would require a valvulotome, and there is currently no valvulotome on the market in the US for this.

My right jugular is patent now for 7 months with no further intervention on that side. I don't know how long it will stay patent. I would be really surprised if it never required another ballooning.

It might just be the reality that CCSVI treatments need to be repeated, if not in everyone then certainly in some of us. This is a harsh reality if one is paying out-of-pocket for the procedure. But then again we have MS, we are familiar with harsh realities.

Even in June 2010, IRs were doing angioplasty on the area of the valves since that is where the narrowings mostly were. Even if the IR didn't know it was a valve, it was still narrowed, and it was where he ballooned.

I agree about the learning curve and the too-high price that has been paid.