Poll: have 2000+ pwMS been de-stenosed?

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

2000+ pwMS has been de-stenosed ?

Poll ended at Tue Nov 23, 2010 11:50 am

Yes it is true
23
82%
No it is not true
5
18%
 
Total votes : 28

Postby scorpion » Wed Nov 03, 2010 5:38 pm

I guess I can see where maybe 3000 people have been treated if we are thinking globally. I for one have no clue what is occuring in Poland, Kuwait, Ethopia, and wherever else poeple are being "de-stenosed". When we talk about getting de-stenosed are people refering to stents or ballooning or both? If the numbers are that high I hope some of the doctors performing this procedure are keeping some good records so that we can see if it is actually helping the patients. I only ask that when people post statistics that they have data to back it up because the people who come to this website for information deserve nothing less. In the past when I have asked people where they found their data I literally go check out their source( if they share it) because I am interested and not because I think they are lying.
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Postby jimmylegs » Wed Nov 03, 2010 6:24 pm

i'm *guessing* total estimates for de-stenosed patients refers to any means.
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Postby bigfoot14 » Wed Nov 03, 2010 6:47 pm

I can add that the IR we interveiwed here in Chicago, to do a procedure on my wife has done 17 so far with 13 more scheduled for the month of november....

We set a date for mid-January as we want the Dr to have done 50
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Postby cheerleader » Wed Nov 03, 2010 7:26 pm

Dr. Dake was referring to clinical trials and treatment centers that are keeping records, following patients, discussing results at symposiums and working with each other. The doctors in this group are Dake, Siskin, Sinan, Simka, Zamboni, Zivadinov, Mehta, Hubbard IRB, and several others. They've been sharing information on the Endovascular Forum, SIRS and vascular conferences. Treatment is both ballooning and stenting of central venous stenosis.

http://www.endovascular.org/

note the number of CCSVI articles on the homepage of the Society of Interventional Radiologists
http://www.sirweb.org/

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Wed Nov 03, 2010 7:37 pm

..
Last edited by Lyon on Thu Jun 23, 2011 6:31 pm, edited 1 time in total.
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Postby Cece » Wed Nov 03, 2010 7:51 pm

Lyon wrote:I don't want to seem vainglorious [...]

I would rather be vein-glorious

Lyon wrote:That's all moot because the actual, and still valid, point is that no one knows the amount treated with accuracy nor the amount (if any) of favorable/no difference/negative results.

Your latter point is valid, but I don't think the count is moot. In sheer numbers, that's how many people with MS were found to also have CCSVI by what is now a vast range of different IRs. It speaks to the association between CCSVI and MS. I am looking forward to the registries and other trials that are beginning, we will get more information as this unfolds. Early days....
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Postby malden » Thu Nov 04, 2010 1:15 am

cheerleader wrote:...The doctors in this group are Dake, Siskin, Sinan, Simka, Zamboni, Zivadinov, Mehta, Hubbard IRB, and several others. ...


This doctors group is trying to find bigger market for their product. MS suffers are small group compared to 25% of the healthy population in which they can also found CCSVI. This is a huge market. They just need to link CCSVI with other symptoms and diseases.
Therefore, they regrouped and are no longer talking about CCSVI as MS related, they are talking about CCSVI 'per se'.
Dr. Sclafani:
'... I do not treat MS, I treat ccsvi and its symptoms like fatigue.....any neurologists know what causes it? or how to treat it? it is one of the consistent improvements that patients describe.'
'...you do not have to have MS to have symptoms of ccsvi and you dont have to have stenoses to have ms...'
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Is De-stenosis safe ?

Postby MarkW » Thu Nov 04, 2010 3:21 am

The opening challenge from neurologists on Zamboni's theory was that it was unsafe. I suggest that vascular surgeons and IR doing balloon venoplasty across the globe write a joint letter (lead author Prof Zamboni ?) after they reach 5000 patients saying:

'in our research and clinics we have we have treated over 5000 people with Multiple Sclerosis using balloon venoplasty. We have found the procedure we used to be safe. The number of serious problems we encountered was X or x/5 per 1000. We suggest that treating this symptom in pwMS a reasonable decision while further research is conducted. Further publications regarding methodology will follow in specialist journals.' 8)

This type of letter is generally accepted very quickly in medical jourmals which publish weekly. This used to be an important method to share information. Nowadays, journals publish on line immediately and in print later but I suggest using a major global medical journal for such a letter.

The difference between the 2000 pwMS I quoted and 3000 from Cheer is easy to explain. My 2000 figure comes from a web interview with Dr Hubbard which may be viewed on the web:
http://www.komonews.com/home/video/106175483.html
Cheer's 3000 number was personal information from Prof Dake MD, so you have to decide if you trust it or not. I trust it and hope it will be available in a quotable form before too long. :idea:

I am amazed the venoplasty is moving so quickly and hope we pass the 5000 pwMS by balloon venoplasty, in 2011. :o

MS neuros say more evidence is needed. Double blind, placebo controlled, multi-centre trials are a pre-requisite. Such a trial is not possible to design as a definite diagnosis requires selective venography. The act of selective venography may open webs or sceptums in a stenosed azygos vein, thus giving unintentional treatment at diagnosis !!

De-stenosis is not a cure for MS but I for one have no doubt this symptomatic therapy is worth a try, if like me your MS is progressive.

Kind regards,

MarkW
Last edited by MarkW on Thu Nov 04, 2010 5:44 am, edited 3 times in total.
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Safety is tested before efficacy in healthcare

Postby MarkW » Thu Nov 04, 2010 3:37 am

The Lancet Neurology published an editorial challenging safety:
Lancet Neurol. 2010 May;9(5):464-5.
Venous abnormalities and multiple sclerosis: another breakthrough claim? Qiu J.

Two quotes:

"Poor judgment in medicine can lead to interventions with fatal consequences. Lives should not be lost before these interventions are halted, but they often are."

"Many experts, such as Alasdair Coles, a neurologist at the University of Cambridge, UK, are openly critical that Dake subjected his patients to a grave risk without any evidence that the procedure would help to treat MS." :evil:

2-3000 balloon venoplasties with no deaths is a good answer.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby fernando » Thu Nov 04, 2010 6:36 am

I can't give accurate worldwide estimates but here, in Argentina, almost 10 patients have been liberated (I visited one of them) and I know that that is true for Chile, too. And they are just starting.

This just give an estimation of how many countries are "liberating" patients.
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Postby Algis » Thu Nov 04, 2010 7:12 am

9 patients were treated in Taiwan; MS sufferers with CCSVI.

Outcomes range from "little" to "very significant"

(hard to say on 9 peeps but as a foreigner I just have to accept those data).
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Postby sbr487 » Thu Nov 04, 2010 7:18 am

Mark, when you started this thread, I wasn't very comfortable but its good to note that some interesting information is coming out (like treatment in Taiwan, Argentina, Chile) ... I did not know most of these cases ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Pharmacists are good at counting

Postby MarkW » Thu Nov 04, 2010 8:46 am

Hello sbr487,
I was very confident of my 2000 number when I posted it, especially as Dr Hubbard had stated 2000 in a web interview. The real figure is probably much higher as Athens (Greece not USA), Austrailia, NZ, India, Belguim, new clinics in Poland, Sclafani and NE USA doctors, Scotland etc etc have not been included. I trust the 3000 number from Prof Dake via Cheer but that includes stenting which I deduct from 'balloon venoplasty'.

This number is very important for 'safety of procedure' reasons. Prof Zamboni was clear the procedure of balloon venoplasty is safe (interview in the Benelux recently).

Would you contact the Indian clinics every month and post an Indian number ?

Kind regards,

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Jugular » Thu Nov 04, 2010 9:13 am

I think these numbers have some bearing on the safety of the procedures being performed, some relavence on the number of patients with a treatable condition and next to no relevance on outcome.

Clearly the vast majority of these procedures were angioplasty without any reported serious consequences. It's more difficult to assess stenting. There has been one death (unrelated), one emergency trip and several reported cases of thromboses in the stents that seem to be fairly difficult to fix. The number of stents appears to be unknown, however.

At present the most serious risk of angioplasty seems to be restenosis due either to throbosis or 'rebound' that can lead to a more severe restriction than what was initially treated, worsening the patient's condition. Apart from that, restenosis seems to mainly lead to losing some of the gains from having the procedure and the need for more angioplasty.

Perhaps we should adopt McDonald's marketing strategy and say "over 4,000* freed!"




*neck veins.
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Unsupported comments from Jugular

Postby MarkW » Thu Nov 04, 2010 9:29 am

Jugular wrote:
At present the most serious risk of angioplasty seems to be restenosis due either to throbosis or 'rebound' that can lead to a more severe restriction than what was initially treated, worsening the patient's condition. Apart from that, restenosis seems to mainly lead to losing some of the gains from having the procedure and the need for more angioplasty.


Do you have any evidence that restenosis is due to 'thrombosis or rebound' ?
Why do you post about angioplasty ? Are not veins being treated ?

MarkW
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Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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