NEGATIVE OUTCOMES

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

NEGATIVE OUTCOMES

Postby dania » Sat May 07, 2011 12:24 pm

How many of us, after having the procedure, experience improvements only to have them disappear and have the symptoms return, or get worse? How many got retested and found they have restenosed and that stenosis is worse than originally? How many of us, now have a totally occluded vein?

I am one of those persons. After seeing great improvements with the first procedure that were short lived and trying another 4 times, all 3 of my veins are totally occluded due to scarring. The last doctor, Dr Arata, who is fantastic, said my only hope lies with a VEIN BYPASS.
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Postby pklittle » Sat May 07, 2011 12:49 pm

dania, how is the blood returning from the brain and spine if all 3 are occluded? do you have extensive collaterals?

as for me, i tried once resulting in one occluded vein, have sustained vision improvements, but everything else has gone downhill.
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Treated twice

Postby Rosegirl » Sat May 07, 2011 1:06 pm

I have been treated twice.

The first time was Julyh 2010 at Georgetown University Hospital in DC. I was one of 30 patients who were undertreated. My only problem is walking (holding on to 2 walls is best, and outside I use a scooter). I got the HD vision thing while on the table, and that was all. The doctor missed the left jugular (he was in a vertebral vein), said the right IJV was fine and ballooned my azygous.

I was retreated last month. The new doctor found and treated the following blockages: left IJV 80%, right IJV 95%, azygous 70%, left renal stenosis 70% and left common iliac 80%. Again my eyesight changed -- now I can read that impossibly small print on pill bottles.

Unfortunately, there has been no change in my walking. I have been told to be patient, that some people see improvements up to six months after treatment.

My problem is really stiffness, which in turn affects my balance. One numerous occasions, everything works perfect -- for anywhere from 30 seconds to a few minutes. I suspect there is a flap or something else that moves that was not treated. My experience says that my walking can be corrected, but I'm at a loss of what to do but wait to see if I get some improvement gradually.

Patience is not my best virtue.
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treated once

Postby munchkin » Sat May 07, 2011 6:20 pm

I was treated once and I had great results. Spasticity, balance, heat intolerance, bladder, foot drop, and fatigue. Everything was great for about 2 weeks and then things slowly started to fade.

At the one month mark I had an U/S and it showed that the LIJV was occluded but at that time the right still had good flow. I will be going for another U/S in a couple of weeks and will find out how occluded the LIJV is and if the RIJV is still showing good flow.

We all knew going in there were risks, but I think most of us thought we wouldn't get worse, we just wouldn't have any improvements. Some people are getting much worse much quicker. I think we are all sure it works but how many times do you try and at what risk to your veins. Dania has said what has happened to her. Are there any Dr's in either the states or Canada that are able/or trying to deal with these outcomes?
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Re: treated once

Postby Lyon » Sat May 07, 2011 6:56 pm

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Postby munchkin » Sat May 07, 2011 7:42 pm

No offense taken. I should have been more careful writing that statement. My reference was to those of us who have had our veins opened and experienced improvements. I speak for myself when I say that I wouldn't go back for another try if I didn't' think it had done something for me.
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Postby Lyon » Sat May 07, 2011 8:07 pm

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Postby CaptBoo » Sat May 07, 2011 8:11 pm

There are a number of us on this site that have had the procedure and know that in our world there is a relationship between CCSVI and MS. Nobody knows what that relationship may turn out to be. And, yes Bob, there is not a credible body of science that proves anything either way, but, hey, it worked for me and with your wife having a non-aggressive case, you can afford to wait. Stalemate.

ColRose continuously makes the point that there cannot be any relationship between clogged veins and MS and in fact clogged veins can not cause harm. If CCSVI has no relationship to MS, then how come some have various degrees of improvement, some have various degrees of degradation, particularly when imaging shows restenosis. Restenosis disproves placebo.

Either there is a relationship between the two or there is not. If there is not then having an IR balloon your veins should neither positively nor negatively affect MS symptoms. If your symptoms are affected one way or the other there is a relationship. Of course I am only speaking for me and my relationship with MS and CCSVI. I know neither you nor ColRos have a personal relationship with either.
<div>There be no dragons   ...Reese Palley</div>
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Postby dania » Sat May 07, 2011 9:06 pm

pklittle wrote:dania, how is the blood returning from the brain and spine if all 3 are occluded? do you have extensive collaterals?

as for me, i tried once resulting in one occluded vein, have sustained vision improvements, but everything else has gone downhill.

Dr Arata said my vertebral veins are doing most of the work returning the blood from the brain to the body. But they are not sufficient.
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Postby Lyon » Sat May 07, 2011 9:52 pm

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Postby munchkin » Sun May 08, 2011 6:00 am

Hi Lyon

I will try to answer your question without getting into the other issues, they are not my forte.

The reasons that I thought it worked are because I knew some people personally that had the procedure done overseas and their results were not placebo. Each person knows their own body and those of us with MS know how our bodies behave. I knew that the procedure changed how my body was behaving during waking hours and during sleep which I wouldn't be able to influence with wishful thinking.

My decision to try the CCSVI procedure was based on a number of factors: it made sense to me that slowed blood flow would affect the flow of oxygenated blood entering the brain (my husband works with hydro systems), my MS clinic neurologist told me he didn't know why I was getting worse and there wasn't anything he could do for me so I should come back for a visit in one year (that kind of cinched it for me), and my belief that I wouldn't get worse from the procedure just maybe not better.
I had nothing to lose except the cost of the procedure but I got a chance to gain some of my mobility back.

As a Canadian, I was self pay, so this was a pretty big decision when you look at the costs involved. The government here wasn't even going to let research happen and that made me wonder about the reasons why. With all of that being said and with everything that is happening with totally blocked veins I will be waiting for a while before I make any decisions on what to do next.
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Postby Lyon » Sun May 08, 2011 6:14 am

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Re: NEGATIVE OUTCOMES

Postby mavis » Sun May 08, 2011 3:07 pm

dania wrote:How many of us, after having the procedure, experience improvements only to have them disappear and have the symptoms return, or get worse? How many got retested and found they have restenosed and that stenosis is worse than originally? How many of us, now have a totally occluded vein?


Your story is a sad one Dania. I hope you find the right doctor to solve your problems.
I had a treatment a year ago that brought some nice changes for me, mainly decreased spasms and fatigue. Then I restenosed. Although it wasn't worse than the original blockage, it was close. I certainly progressed and I am in worse condition today, but I don't blame the procedure for that. We know that MS is a progressive disease. Looking at the progress over the last 4 years where my MS has been very punishing, I strongly think I would have come to this point anyway.
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Postby ozarkcanoer » Sun May 08, 2011 3:30 pm

I have had the venoplasty twice, done by a top-notch IR is the USA. I had great improvements starting 2 weeks after my first procedure. They lasted about 2 months and then my pain started up again but not nearly as bad as before the procedure. I had a second procedure in March and the IR discovered that the stent in my left IJV is completely blocked.

In spite of all that I think I am better than I was before. Unfortunately I have daily fatigue, headache and pain and I don't know what to do about my left IJV. I hope to see a local (St Louis) IR in June for a consultation to see if there is anything (a bypass ?) that can be done.

The mistake I made was not having follow-up soon enough.

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Postby 3girls » Sun May 08, 2011 9:28 pm

After I was liberated I continued to test and change my diet and supplements, with the assumption that the blocked veins had been caused by poor nutrition and years or decades of undiagnosed celiac disease. I am mostly symptom free now. If ever I start to feel the tingles coming I can generally pinpoint it to forgetting to take my supplements (mainly fish oils and B12) or missing yoga, etc. I guess what I'm saying is that I think the liberation treatement is a huge step in the right direction but if we don't address the underlying cause of the stenosis then we can expect it to come back. I'm curious if those with negative outcomes have looked into nutritional/lifestyle strategies and if there might be some patterns to emerge.
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