BECOMING A COMMON STORY

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

BECOMING A COMMON STORY

Postby dania » Mon May 16, 2011 5:25 am

Those of us who were treated and had improvements but they disappeared can relate to this story.

http://www.vancouversun.com/health/Alta ... story.html
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Postby 1eye » Mon May 16, 2011 5:56 am

Continually calling PTA unproven experimental unsafe dangerous or any of the other loaded adjectives I keep hearing from the press is ridiculous and irresponsible, bad journalism. It happens every single day hundreds of times a day in almost every hospital. It is a mainstay of modern medicine. As someone with 3 stents put in his chest by one of the top cardiac surgeons in Canada I resent this tremendously. Endothelium is endothelium, in both veins and arteries. Veins are not sacrosanct. My brother has had a plastic shunt in his jugular since he was a newborn, almost 50 years ago.

Let's have a movement, or get off the pot.
Last edited by 1eye on Tue May 17, 2011 5:27 pm, edited 1 time in total.
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Postby dania » Mon May 16, 2011 6:32 am

The only reason for posting this story, is that this woman improved after being treated. But the improvements disappeared 6 weeks later. My improvements disappeared also. Too many of experiencing the same.
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Postby ikulo » Mon May 16, 2011 6:39 am

Thanks for sharing Dania. Hopefully these types of articles will continue to inform and educate those who are considering treatment that you can in fact get worse after. I know first hand the feeling of crushing defeat that accompanied the return and worsening all of my symptoms and more.

Those very early in the disease and with low disability should think twice about being treated.
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Postby Cece » Mon May 16, 2011 6:42 am

If zero was where she was before undergoing the treatment and 10 is where she was right after it, her MS symptoms are now at three, Romanuik says, down from a seven, a month ago. She’s certain the regression means her veins have become blocked again because there was no stent put in to hold them open.

She is still improved from where she was before the procedure. (Zero is bad, ten is good, on her scale.)
These reports scare me, especially in Canadians, because there isn't easy follow-up care. She's assuming the loss of improvements is from elastic recoil / return of the vein to it's usual state, that's why she thinks a stent is the solution. But it could be clotting, intimal hyperplasia, scarring....
Those very early in the disease and with low disability should think twice about being treated.

Or seek out a more conservative IR.
I had a great day yesterday. Took the kids to the Mall of America amusement park. Took separate cars because I knew I'd have the energy to drive home afterwards and that way my husband was able to go on to something he had scheduled. This would not have been possible before my procedure. Plus the colors were so bright, and I thought to myself, it's been three months, will I be getting used to these colors anytime soon?
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Postby scorpion » Mon May 16, 2011 7:18 am

Cece wrote:
If zero was where she was before undergoing the treatment and 10 is where she was right after it, her MS symptoms are now at three, Romanuik says, down from a seven, a month ago. She’s certain the regression means her veins have become blocked again because there was no stent put in to hold them open.

She is still improved from where she was before the procedure. (Zero is bad, ten is good, on her scale.)
These reports scare me, especially in Canadians, because there isn't easy follow-up care. She's assuming the loss of improvements is from elastic recoil / return of the vein to it's usual state, that's why she thinks a stent is the solution. But it could be clotting, intimal hyperplasia, scarring....
Those very early in the disease and with low disability should think twice about being treated.
Or seek out a more conservative IR.
I had a great day yesterday. Took the kids to the Mall of America amusement park. Took separate cars because I knew I'd have the energy to drive home afterwards and that way my husband was able to go on to something he had scheduled. This would not have been possible before my procedure. Plus the colors were so bright, and I thought to myself, it's been three months, will I be getting used to these colors anytime soon?



or the placebo effect has run its course.....
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Postby Cece » Mon May 16, 2011 7:37 am

I am curious about this because while it is maddening to have placebo placebo placebo always mentioned, placebo is real and must be at play at least in some capacity (minor, in my opinion.....). Here is what she said about placebo in this article:
“The way that I felt after the procedure and the things I could do without any effort, without thinking, is undeniable. There’s no way it was a placebo effect.”

The improvements are captured on a video shot by her husband Chris in India right after the treatment. What makes her cry whenever she sees it, is how easily she hopped up on a bed and swung her legs up off the floor, movements she used to have to think to do and that took time to accomplish, and, that she’s back to doing the same way again.

edited to add: when it's mobility improvements, it seems especially less likely to be placebo.
Last edited by Cece on Mon May 16, 2011 9:18 am, edited 1 time in total.
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Postby PCakes » Mon May 16, 2011 7:56 am

scorpion wrote:or the placebo effect has run its course.....

sigh.. :(
The only way we will ever know the answer is through research. The only way research will happen is if the momentum stays positive.
There's two sides to this discussion. We know that. Why can't we join forces now and use all this energy to PUSH ?

I talked with a good friend the other day that had read all the Globe and Mail articles last week.. this is the glean..she said .."oh, it is so sad that the theory is not true. You must be so dissapointed."

We have to stand together, we need public support or things are going fall apart and slow to a crawl. I don't think any of us want that.
Last edited by PCakes on Mon May 16, 2011 8:33 am, edited 1 time in total.
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Postby WeWillBeatMS » Mon May 16, 2011 8:06 am

scorpion wrote:or the placebo effect has run its course.....


Seriously? Are you really still strumming on the placebo banjo? That song is played out and you need to let it go. The condition called CCSVI is real and this angioplasty treatment that we have available to us at this point offers real (even if short lived in some cases) results. In the future maybe their will be some less invasive way of correcting it. And the short lived results that some people have had after having the liberation procedure are at the expense of those who had the procedure early on. I am grateful to them and feel bad for them and respect their decision to "go for it" early. Now those who are going for the procedure more recently with experienced physicians are having more lasting results. The doctors such as Dr Sclafani and others have gone through a learning curve with their techniques. The improvements are lasting longer without restenosis now. To say to someone such as Dania and Donna Romanuik who are genuinely struggling having gone through the procedure(s) that what was experienced was nothing more than a placebo effect is not cool.

Dania - Thank you for sharing your angioplasty experience with all of us here in TIMS. I very much respect the fact that you are trying to prevent other people from going through the same thing you are experiencing. But don't you agree that people that are having the procedure done now (like in the past six months or so) by a reputable IR are having much more lasting results than those done a year ago or more?


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Postby scorpion » Mon May 16, 2011 9:23 am

WeWillBeatMS wrote:
scorpion wrote:or the placebo effect has run its course.....


Seriously? Are you really still strumming on the placebo banjo? That song is played out and you need to let it go. The condition called CCSVI is real and this angioplasty treatment that we have available to us at this point offers real (even if short lived in some cases) results. In the future maybe their will be some less invasive way of correcting it. And the short lived results that some people have had after having the liberation procedure are at the expense of those who had the procedure early on. I am grateful to them and feel bad for them and respect their decision to "go for it" early. Now those who are going for the procedure more recently with experienced physicians are having more lasting results. The doctors such as Dr Sclafani and others have gone through a learning curve with their techniques. The improvements are lasting longer without restenosis now. To say to someone such as Dania and Donna Romanuik who are genuinely struggling having gone through the procedure(s) that what was experienced was nothing more than a placebo effect is not cool.

Dania - Thank you for sharing your angioplasty experience with all of us here in TIMS. I very much respect the fact that you are trying to prevent other people from going through the same thing you are experiencing. But don't you agree that people that are having the procedure done now (like in the past six months or so) by a reputable IR are having much more lasting results than those done a year ago or more?


WeWillBeatMS


Yes I am. Seriously. PCakes I agree with you the only way to find answers is through research but I think another aspect of this is that when research results are released, no matter what we individually believe, we accept them as more evidence one way or the other BUT not as some conspiracy hell bent on keeping the status quo. The only difference between Cece and I is that I believe most of the improvements are a result of placebo OR the natural course of an individual's disease; other than that we are in agreement. :oops: That said I would openly welcome CCSVI being the real deal so I could get rid of some of the damn cog fog I am feeling today. Now now Cece, no comment about this resulting in my placebo comment. :wink:
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Postby 1eye » Mon May 16, 2011 9:25 am

Yes, thank you Dania. I did see it as a positive development that there was such a report and, I really believe the placebo effect has probably run its course about as much as I believe doctors never accept kickbacks from drug companies. I do consider that recurrence of symptoms of extracranial drainage problems is a serious setback for any individual. Given the current, as Dr. Dake describes it, "chaos" surrounding treatment and follow-up it is going to be an ethical burden all MDs will take on sooner or later. Let's hope they choose to do the right thing.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Postby Ernst » Mon May 16, 2011 9:54 am

My wife got incredible and wonderful effects about 11 months ago, quite soon after operation. We had wonderful week and we were bot really surprised the effects she got --> fatique disappered, weaker side of body got stronger, heat intolarance became normal, etc.. and it felt like a miracle.. but about week after procedure her MS symptoms came back little by little. She got very disappointed and I tried to engourage her. But after two weeks with same situation, I was also disappointed -- and we were sure that there is re-stenosis. But 3 weeks after her condition began to improve, just like after op.. and we were once again surprised and extremely happy. And now, 11 months after her condition has been steady, and MS-symptoms have been away. Two years before operation, she couldn't exercise proberly, but last 6 months she has been able to train hard. Would be very hard to think this as placebo, no way.
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby HappyPoet » Mon May 16, 2011 10:20 am

Ernst,
Maybe your wife's vein recanalized on its own. Dr. Sclafani has mentioned that this can happen if a vein started to clot (thrombosis). I wonder how many others had immediate improvements, lost them, and then got them back again. I'm very happy for your wife. Thank you for sharing.
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Postby Cece » Mon May 16, 2011 12:04 pm

The only difference between Cece and I is that I believe most of the improvements are a result of placebo OR the natural course of an individual's disease; other than that we are in agreement.

I even agree with you that, until well-conducted research gives us answers, we don't have the answers we'd like to have. MS is tricky to study with the relapsing-remitting. Even trickier when we are studying it through anecdotes.

Do you really think it will come in on the side of placebo and no effect? It just makes sense, for my own 80% and 100% closed jugulars, that opening them was healthier than leaving them blocked.
That said I would openly welcome CCSVI being the real deal so I could get rid of some of the damn cog fog I am feeling today. Now now Cece, no comment about this resulting in my placebo comment.

:) Your placebo comment generated some conversation, it wasn't bad. :)
I hope the research is done quickly and well and that it shows that CCSVI treatment works. Cog fog begone.
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Postby WeWillBeatMS » Mon May 16, 2011 12:08 pm

Ernst wrote:My wife got incredible and wonderful effects about 11 months ago, quite soon after operation. We had wonderful week and we were bot really surprised the effects she got --> fatique disappered, weaker side of body got stronger, heat intolarance became normal, etc.. and it felt like a miracle.. but about week after procedure her MS symptoms came back little by little. She got very disappointed and I tried to engourage her. But after two weeks with same situation, I was also disappointed -- and we were sure that there is re-stenosis. But 3 weeks after her condition began to improve, just like after op.. and we were once again surprised and extremely happy. And now, 11 months after her condition has been steady, and MS-symptoms have been away. Two years before operation, she couldn't exercise proberly, but last 6 months she has been able to train hard. Would be very hard to think this as placebo, no way.


That's what I'm talking about! :D Re-Destenosis!

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