What a wonderful trip!

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

Postby Arcee » Fri Oct 02, 2009 11:59 am

All bonifide clinical trials include placebo arms


I think it is a bit more complicated as different countries, and probably even different universities, have different standards for different diseases. So in some cases there is not a placebo arm but there is a comparison group which may be on a generally accepted standard of care rather than a placebo per se.

If a study is framed as a trial regarding MS patients in the US, then the notion of a placebo arm, in my understanding, is really murky or even unlikely or not allowable. I am not exactly sure how a study framed as CCSVI and a "surgical" procedure fit in, but as Marie points out, there is a huge ethical consideration even if the standards of MS studies do not apply.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby MrSuccess » Fri Oct 02, 2009 7:28 pm

Okay. I've rolled the placebo surgery thing around in my mind , and I think I have come to some good conclusions.

First off ....I think the CCSVI repair has been divided into two distinct categories .

The first category -balloon expansion as performed by Dr.Zamboni is IMHO a procedure. As described by GiCi.

The second category -stent placements as performed by Dr. Dake is IMHO ....an operation

So what's the difference you ask ?

I categorize an Operation as- removing or adding -what have you. On the other hand , the Procedure is -more or less- ...exploritory . There is no trace of any surgical work. [ other than the entry point in the groin]

Therefore .... I see the procedure done by Dr. Zamboni as an answer to the question asked by Neurologists : What about the placebo effect ?

I think you know where I'm going with this ............ :twisted:

Perhaps our dynamic-duo - Marie and Joan - can comment .....




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Postby radeck » Fri Oct 02, 2009 7:39 pm

redundant post - removed
Last edited by radeck on Sat Dec 19, 2009 5:01 pm, edited 1 time in total.
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Postby MrSuccess » Fri Oct 02, 2009 9:48 pm

Hello radeck - You are right ..I'm not a scientist . Do I sound like one ? :wink:

Like most people , when I need to understand new ideas and concepts ..I use the Internet to find answers . Like ,This Is MS. A great source.

A question/statement was mentioned that I think is important in regard to CCSVI . And that is the concern that Neurologists believe CCSVI might have a placebo effect[b] .

Earlier today , you offered an opinion that you felt a CCSVI placebo controlled trial ...is out of the question .

Sorry ...but I don't agree with you.

You must bear this in mind. Several patients have had to get Dr.Dake to perform additional stent work. These patients reported that the second fix went better....unlike the initial surgery.

Now compare that to Dr. Zamboni's liberation patients. As far as we know his people have no implants of any kind , leading to sore necks , pinched nerves and blood thinner medication complications and so on....

It is entirely possible that some of the Liberation patients could have had exploratory surgery of their veins ....without correcting any stenosis... :idea:

And suffered no harm. Especially those with extremely low EDSS scores.

What happens if those patients begin to report back to Dr. Zamboni, that they have drastic improvements ? 8O

That's why those educated intelligent neurologists are withholding their support.

Any Volunteers ?



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Postby CureIous » Fri Oct 02, 2009 11:09 pm

:) Doing my part to restore the thread back it's original intent.
Last edited by CureIous on Sat Oct 03, 2009 9:01 am, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Jamie » Sat Oct 03, 2009 6:00 am

Hey dudes, do me a favour and take this elsewhere?

Thanks.

The FACTS ARE:

1) Mel now works full time
2) Mel is now back exercising when she chooses to. (She used to run 10ks and half marathons pre-MS.)
3) Anyone who says the fatigue was in her head to my face will get punched in theirs.
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Postby Jamie » Sat Oct 03, 2009 6:26 am

Also, Mr.Success, can I ask aliitle about you?

You've made 17 posts on TIMS, all about CCSVI.

Is it you with MS or someone close to you?

What treatments have you/your friend/relative with MS looked at?

Can you share some of your experiences with the disease? It would sure help us know where you are coming from?

And make us more open to your perspective perhaps.

Excuse the intrusion but you seem ready to discount peoples personal experience without actually sharing any of yours.
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Postby cheerleader » Sat Oct 03, 2009 6:58 am

Jamie wrote:Also, Mr.Success, can I ask aliitle about you?

You've made 17 posts on TIMS, all about CCSVI.
Excuse the intrusion but you seem ready to discount peoples personal experience without actually sharing any of yours.


Thanks, Jamie...
I asked a similar question on a research thread where I got some personal zippy come backs. We're all on here, sharing truth and our experiences and trying to help each other. Of course, now we've opened your "Wonderful Trip!" up to another destination. I'll start a welcome wagon thread for our new CCSVI poster...

I am SO GLAD MEL is living, exercising, working and healing. We have a similar scenario going on in our house. Thanks for sharing her experience and your journey together with us, Jamie. It is a wonderful trip...

Back to JAMIE and MEL! because bold makes it more important!

cheer :!:
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jamie » Sat Oct 03, 2009 7:07 am

I would also like to say that Mel has a bachelors in neuroscience, a masters in genetics, is a phd and researcher and is also a teaching professor at Baylor College of Medicine.

Additionally she counsels women with high risk of genetic illnesses or general high risk pregnancies.

To suggest that she doesn't have the intellectual ability to make a decision like this is laughable.

I'm not exactly dumb myself.

I would suggest someone in awe of a run of the mill neurologists intelligence isn't exactly a mental athlete themselves.
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Postby Loobie » Sat Oct 03, 2009 7:51 am

Just remember, the easiest job in the world is a critic. That's why there are so many of them. The hardest is to criticize and then offer up a well thought out different opinion. or alternative. When the criticism doesn't come with the latter, then those people to me just fall in the category of blog comment posters and the like. The dumb masses if you will.
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Postby patientx » Sat Oct 03, 2009 8:20 am

cheerleader wrote:I just want to say that the doctors I saw today are much better behaved at questioning than some folks online here....they understand the nuance of "tone". It is possible to question people without being nasty or deriding them...and yes, debate is very important, but so is respect. I was impressed by that today. Even when people had completely different opinions (venous stenting was one such topic)...everyone spoke with respect.
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Postby Lyon » Sat Oct 03, 2009 8:32 am

oo
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Postby guitarguy » Sat Oct 03, 2009 8:54 am

I was just thinking, wouldn't it be nice if the CCSVI people had a private forum? Nothing wrong with healthy debate but some people just want to be argumentive and belittle people.
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present state of affairs

Postby GiCi » Sat Oct 03, 2009 8:59 am

I think it is important to understand where we are at present with CCSVI and its treatment.
Zamboni has found a very strong positive correlation between obstructed venous drainage from the brain and MS. Although any person equipped with a pinch of common sense would think that finally the cause of the dreadful condition has been discovered, unfortunately strong positive correlation (even 100%) does not prove a relationship of cause and effect scientifically.
Even the reported improvements following either ballon angioplasty or stents do not constitute an unrefutable fact, given the unpredictable and fluctuating behaviour of MS and the small size of the population of the experimental sample.

A possible solution would be a double-blind randomized study, but I think it would be unethical and immoral to deny the treatment of venous obtructions in patients in order to have a control-group.

So in my opinion we have to wait until the procedure is performed in an increasing number of centres and the body of clinical evidence increases. The painful drawback is that only a few pro-active patients are receiving help. We must continue spreading knowledge and putting pressure on the medical profession.
A very meagre consolation is thinking how many neurologists will be ashamed of their present obtusity in the near future.
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Postby CureIous » Sat Oct 03, 2009 9:02 am

Jamie wrote:Hey dudes, do me a favour and take this elsewhere?

Thanks.

The FACTS ARE:

1) Mel now works full time
2) Mel is now back exercising when she chooses to. (She used to run 10ks and half marathons pre-MS.)
3) Anyone who says the fatigue was in her head to my face will get punched in theirs.



Exactly. Exactly. Exactly.
#3 is my favorite. Figuratively speaking of course! lol.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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