stop progression or not?

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

stop progression or not?

Postby slody » Wed Jul 07, 2010 4:07 am

Hi,
I thought c c s v i would stop my ms from progressing but after reading Dr Simka's reply about restenosis I'm feeling disheartened. Was I wrong?
Thanks,
Slody.
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Postby concerned » Wed Jul 07, 2010 10:06 am

I don't think we know one way or the other yet.
Who told you that it would stop progression?
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Himself!

Postby BELOU » Wed Jul 07, 2010 10:15 am

Come on concerned... It comes from Zamboni himself during his interview at CTV.

''If you keep no narrowing you have no more relapses''

But in fact relapses are not always related to progression. Lots of people here state that it stops the progression. But in fact nobody knows yet...

Use the force!
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Re: Himself!

Postby concerned » Wed Jul 07, 2010 10:18 am

BELOU wrote:Come on concerned... It comes from Zamboni himself during his interview at CTV.

''If you keep no narrowing you have no more relapses''

But in fact relapses are not always related to progression. Lots of people here state that it stops the progression. But in fact nobody knows yet...

Use the force!


That seems like an irresponsible thing to say. Did he say "That's the theory" or did he say "That's the truth?"
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Postby BooBear » Wed Jul 07, 2010 10:23 am

I have an issue with relapses tied to progression overall.

I have had several relapses since my dx in 2004. However, I have also had new lesions identified without relapses. My last MRI (taken six months apart) indicated two new areas of lesions- without a relapse.

I know relapses appear to be the "standard" for disease progression, but if you can get new lesions without relapses then have you progressed? I am of the opinion that you have.
Three veins angioplastied.  One renewed life.  
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Postby CCSVIhusband » Wed Jul 07, 2010 11:19 am

What if you've never had a 'relapse' ... yet have progressed. Then post CCSVI liberation your symptoms disappear?

I've seen it ...
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Postby Lyon » Wed Jul 07, 2010 1:04 pm

.
Last edited by Lyon on Sun Nov 20, 2011 8:09 pm, edited 1 time in total.
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Postby tazbo » Wed Jul 07, 2010 3:30 pm

Hey Slody...in answer to your question, there are a variety of reports about post angioplasty treatment for CCSVI. There are many posts on this site and lots of news. The Dr who may do your procedure will hopefully have a comment on his results history. My advise is to take some time to read some research. Some commentaries you may get with your question might only confuse your search for clear guidance.
Good luck...
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Re: Himself!

Postby Salvatore24 » Wed Jul 07, 2010 6:47 pm

concerned wrote:
BELOU wrote:Come on concerned... It comes from Zamboni himself during his interview at CTV.

''If you keep no narrowing you have no more relapses''

But in fact relapses are not always related to progression. Lots of people here state that it stops the progression. But in fact nobody knows yet...

Use the force!


That seems like an irresponsible thing to say. Did he say "That's the theory" or did he say "That's the truth?"


This is the hypothesis:

Dr. Zamboni said that he has found narrowing in the jugular & azygous veins in the majority of MS patients. Upon opening these veins, they have reported significant relief and no progression or relapses. The ones that have gotten worse (be it further progression or relapses) are patients that the veins have renarrowed. He has never said that this is the cause or cure for MS. He is saying "this is what I found, other people need to research this hypothesis".

I don't understand how people can twist his words, and make out that he's saying that this is a cure for MS. These are his findings, he just wants others to look into it as well, because he believes it plays a significant role in MS.
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Postby concerned » Wed Jul 07, 2010 7:04 pm

I didn't twist any words. I asked why the poster thought it would stop progression, and somebody responded with a quote from Zamboni saying Liberation would stop relapses. I'm pretty sure there's no proof of that and saying it on national TV (international on the internetz) seems highly unethical to me. (at least if he said it as if it were a cold, hard fact.)
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Re: Himself!

Postby BELOU » Wed Jul 07, 2010 7:21 pm

Actually, he said, ''if you keep no narrowings, you have no more relapses'' You can twist it the way you want but this is what he said...
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Re: Himself!

Postby concerned » Wed Jul 07, 2010 7:31 pm

BELOU wrote:Actually, he said, ''if you keep no narrowings, you have no more relapses'' You can twist it the way you want but this is what he said...



and somebody responded with a quote from Zamboni saying Liberation would stop relapses.


Besides paraphrasing and not quoting what you said, how was what I said a 'twist' or inaccurate? Or was that towards Salvatore? What the internet lacks in subtle nuance it makes up for in gross miscommunication.
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Postby fogdweller » Thu Jul 08, 2010 11:10 am

Lyon wrote:
Although EDSS testing isn't perfect, it's what we're stuck with in the attempt to gauge progression.

Most people with MS that I've communicated with weren't as interested in lesions, black holes and relapses as they are with the symptoms and progression of disability which directly and obviously affect their lives.




Actually I saw a study last week that related EDSS to MRI black holes and concluded that the appearance of plaques was corelated to EDSS and that they could be used as a surrogate marker for worsening EDSS. That will allow an objective, easily determined factor to be measured for FDA trials. (one of the reasons that relapses are used for FDA trials and not progression is that we did not have a measurable factor of progression that we could reliably use for these trials. Now we can just measure MRI plaques.

I looked for the url of that reference, but did not find int right away and I am busy this a.m., but I will try to find it later.
Last edited by fogdweller on Thu Jul 08, 2010 1:55 pm, edited 1 time in total.
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Postby fogdweller » Thu Jul 08, 2010 11:13 am

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Re: Himself!

Postby thornyrose76 » Thu Jul 08, 2010 12:37 pm

Salvatore24 wrote:
concerned wrote:
BELOU wrote:Come on concerned... It comes from Zamboni himself during his interview at CTV.

''If you keep no narrowing you have no more relapses''

But in fact relapses are not always related to progression. Lots of people here state that it stops the progression. But in fact nobody knows yet...

Use the force!


That seems like an irresponsible thing to say. Did he say "That's the theory" or did he say "That's the truth?"


This is the hypothesis:

Dr. Zamboni said that he has found narrowing in the jugular & azygous veins in the majority of MS patients. Upon opening these veins, they have reported significant relief and no progression or relapses. The ones that have gotten worse (be it further progression or relapses) are patients that the veins have renarrowed. He has never said that this is the cause or cure for MS. He is saying "this is what I found, other people need to research this hypothesis".

I don't understand how people can twist his words, and make out that he's saying that this is a cure for MS. These are his findings, he just wants others to look into it as444 well, because he believes it plays a significant role in MS.


No, it's not a cure but someething that will have to be managed throughout one's life. Finding and treating it as early as possible is critical for those with MS because it will wawrd of possible permanent neurological damage.
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