European interventional radiologists are against CCSVI

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

Postby 1eye » Fri Dec 03, 2010 9:53 am

I do not think Europeans will be forced to travel outside the EU for treatment. It is the cradle of CCSVI treatment and no words can change that.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2893
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Advertisement

Postby cheerleader » Fri Dec 03, 2010 11:12 am

Leonard wrote:Joan, thanks for your reaction. The fact that we are exchanging ideas here between Europe and the US and that this can be seen by the whole world is due to US policies, namely those that made the Internet thrive. Your country has (at least had) the power to move old things and entrenched interests away, to bravely pursue new ideas, new lines of thinking. Let us hope that for ccsvi we get that same chance.
Leo


There is a new study out of the Mayo clinic just today that may continue to help the dialogue of blood flow, the endothelium and brain health--
http://www.sciencedaily.com/releases/20 ... 161923.htm

I believe it represents a new lexicon in how we think of the brain. I hope the research in the US will embolden EU researchers. I just received a new paper from Austria this week on this same subject:

Christian Humpel---Chronic mild cerebrovascular dysfunction as a cause for Alzheimer’s disease?
Laboratory of Psychiatry and Exp. Alzheimers Research, Department of Psychiatry and Psychotherapy, Innsbruck Medical University, Austria

The internet is fostering worldwide collaboration. I look to the International Society of Neurovascular Disease to pave the way:
http://www.isnvd.org/

Hang in there, Leonard---thankfully, we have each other, like-minded researchers and the internet to fortify our resolve,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5031
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby thisisalex » Fri Dec 10, 2010 2:12 pm

ok, here is the original englsh version...

http://www.springerlink.com/content/964 ... ltext.html

CIRSE Commentary

Cardiovascular and Interventional Radiological Society of Europe Commentary on the Treatment of Chronic Cerebrospinal Venous Insufficiency
J. A. Reekers1 , M. J. Lee2, A. M. Belli3 and F. Barkhof4

(1) Department of Radiology, AMC, University of Amsterdam, Amsterdam, The Netherlands
(2) Department of Academic Radiology, Beaumont Hospital, Dublin, Ireland
(3) Department of Radiology, St. George’s Hospital, London, England
(4) Department of Radiology, MS Center Amsterdam, VU University Medical Center, Amsterdam, The Netherlands

J. A. Reekers
Email: j.a.reekers@amc.uva.nl
Received: 1 November 2010 Accepted: 3 November 2010 Published online: 7 December 2010

Abstract
Chronic cerebrospinal venous insufficiency (CCSVI) is a putative new theory that has been suggested by some to have a direct causative relation with the symptomatology associated with multiple sclerosis (MS) [1]. The core foundation of this theory is that there is abnormal venous drainage from the brain due to outflow obstruction in the draining jugular vein and/or azygos veins. This abnormal venous drainage, which is characterised by special ultrasound criteria, called the “venous hemodynamic insufficiency severity score” (VHISS), is said to cause intracerebral flow disturbance or outflow problems that lead to periventricular deposits [2]. In the CCSVI theory, these deposits have a great similarity to the iron deposits seen around the veins in the legs in patients with chronic deep vein thrombosis. Zamboni, who first described this new theory, has promoted balloon dilatation to treat the outflow problems, thereby curing CCSVI and by the same token alleviating MS complaints. However, this theory does not fit into the existing bulk of scientific data concerning the pathophysiology of MS. In contrast, there is increasing worldwide acceptance of CCSVI and the associated balloon dilatation treatment, even though there is no supporting scientific evidence. Furthermore, most of the information we have comes from one source only. The treatment is called “liberation treatment,” and the results of the treatment can be watched on YouTube. There are well-documented testimonies by MS patients who have gained improvement in their personal quality of life (QOL) after treatment. However, there are no data available from patients who underwent unsuccessful treatments with which to obtain a more balanced view. The current forum for the reporting of success in treating CCSVI and thus MS seems to be the Internet. At the CIRCE office and the MS Centre in Amsterdam, we receive approximately 10 to 20 inquiries a month about this treatment. In addition, many interventional radiologists, who are directly approached by MS patients, contact the Cardiovascular and Interventional Radiological Society of Europe (CIRSE) for advice. Worldwide, several centres are actively promoting and performing balloon dilatation, with or without stenting, for CCSVI. Thus far, no trial data are available, and there is currently no randomized controlled trial (RCT) in progress Therefore, the basis for this new treatment rests on anecdotal evidence and successful testimonies by patients on the Internet. CIRSE believes that this is not a sound basis on which to offer a new treatment, which could have possible procedure-related complications, to an often desperate patient population.

Introduction

CIRSE believes that the CCSVI theory in its current form has a number of inconsistencies. The core of this new theory is the CCSVI syndrome, i.e., abnormal venous drainage from the brain. However, venous drainage from the head has an impressive anatomic variation, which has not been well catalogued in most textbooks. In addition, valves can be present at a variety of sites in the head and neck veins. Indeed, interventional radiologists who practise parathyroid sampling know about this huge variety in venous anatomy. In addition to the huge variation in normal venous anatomy, the jugular veins have some natural narrowing at two sites, and the azygos vein, so prominent in CCSVI theory, does not drain the brain at all. The azygous vein obviously can drain the spinal cord, but not solely, because many intercostal venous collateral veins fulfil the same function.

In addition, the fact that this imaging is performed with the patient in the supine position has a great influence on blood flow and image interpretation. There recently have been randomised studies comparing so-called “venous stenoses” in patients with and without MS [3, 4]. Both studies showed that there was no difference in the prevalence of venous stenoses between the two groups. This seems to be a strong argument against the existence of CCSVI. However, those physicians performing CCSVI treatment point out that these studies were not performed according to the VHISS criteria. The other part of the theory is that the venous outflow obstruction must be treated. However, if there is a real haemodynamic venous outflow obstruction, there should also be a pressure gradient, and this gradient should disappear after successful balloon dilatation. It has been shown, and confirmed by those who perform balloon dilatation for CCSVI, that over the so-called “stenosis” there is never a measurable pressure gradient. Again, those who perform this treatment will say that it is not the pressure gradient but the change in outflow pattern caused by this stenosis that is the pathologic entity.

What remains is the issue of anecdotal successful treatments. Undoubtedly, some patients obtain symptom relief after treatment for CCSVI, but this could easily be just a placebo effect. Many treatment successes in medicine are based on or helped by a placebo effect. In itself, there is nothing wrong with the placebo effect as long as we recognize that this is at play. It is also known that the more invasive the treatment and the more the treating physician believes in the treatment, the stronger the placebo effect is. Furthermore, MS can affect emotional and labile responses and is characterized by spontaneous relapses and remissions. This makes the gathering of scientific evidence to support CCSVI theory difficult in anything other than an RCT.

What we now have is the dilemma of a new treatment being promoted and performed by some early pioneers, with the popular press trumpeting its success and thus decreasing the chances of performing a properly conducted trial because it is considered unethical not to offer patients this new and promising treatment. The primary task of physicians is primum non nocere or not doing harm. We believe that harm can be caused by offering treatments without any scientific proof of efficacy as well as the more usual forms of medical harm. Pseudo-arguments such as “There is nothing else” or “Do you know how much they pay for medication that does not work?” are not valid and scientific arguments.

Confronted with these contradictions and lack of evidence for CCSVI treatment, some pioneers have taken to calling their work on MS patients a “phase 1 study.” However, a phase 1 study without a protocol, that has not been approved by a medical ethical committee, that does not require informed consent, and that does not have safety committee oversight does not qualify! CIRSE believes that only properly conducted trials with significant scientific rigor can solve this dilemma. We at CIRCE believe that a small prospective randomised trial, with a sham arm, is required. A trial monitored by an independent society, such as CIRSE and/or the European Society of Neurology, would be ideal.

As doctors and interventional radiologists, we certainly hope that all of the anecdotal reports detailing improvements in QOL will prove to be true and that patients will benefit from this new treatment. Interventional radiologists have a long history of introducing pioneering treatments during the last 30 years that have proven to be of enormous benefit to patients. Recently new treatments, such as fibroid embolization, vertebroplasty, and carotid stenting, have all been interrogated by randomized trials. We believe that CCSVI treatment should be evaluated in the same manner. Furthermore, we believe that until real scientific data are available for CCSVI and balloon dilatation, this treatment should not be offered to MS patients outside of a well-designed clinical trial.

Open Access This article is distributed under the terms of the Creative Commons Attribution Noncommercial License which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited.
References

1. Zamboni P (2006) The big idea: iron-dependent inflammation in venous disease and proposed parallels in multiple sclerosis. J R Soc Med 99:589–593


2. Zamboni P, Menegatti E, Weinstock-Guttman B, Schirda C et al (2009) The severity of chronic cerebrospinal venous insufficiency in patients with multiple sclerosis is related to altered cerebrospinal fluid dynamics. Funct Neurol 24:133–138


3. Krogias C, Schröder A, Wiendl H, Hohlfeld R, Gold R (2010) Chronic cerebrospinal venous insufficiency” and multiple sclerosis: critical analysis and first observation in an unselected cohort of MS patients. Nervenarzt 81:740–746


4. Doepp F, Paul F, Valdueza JM, Schmierer K, Schreiber SJ (2010) No cerebrocervical venous congestion in patients with multiple sclerosis. Ann Neurol 68:173–183
User avatar
thisisalex
Family Elder
 
Posts: 218
Joined: Wed Dec 02, 2009 4:00 pm
Location: Hungary

Postby Johnson » Fri Dec 10, 2010 11:04 pm

cheerleader wrote:and Frank Gehry...


...is, CANADIAN!

And Jimi Hendrix learned to play guitar in Vancouver, Canada, while living with his Auntie.
Last edited by Johnson on Fri Dec 10, 2010 11:41 pm, edited 1 time in total.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby Cece » Fri Dec 10, 2010 11:10 pm

However, there are no data available from patients who underwent unsuccessful treatments with which to obtain a more balanced view.

If they're counting youtube videos among the success stories, then our pklittle thread here totally counts as data on the negative for that more balanced view.
Cece
Family Elder
 
Posts: 9011
Joined: Mon Jan 04, 2010 4:00 pm

Postby Sotiris » Sat Dec 11, 2010 12:40 am

thisisalex wrote:ok, here is the original englsh version...

http://www.springerlink.com/content/964 ... ltext.html

Thanks for the link alex.
Apart from promoting the authors' point of view which is certainly legitimate, the article contains the following misinformation:
It has been shown, and confirmed by those who perform balloon dilatation for CCSVI, that over the so-called “stenosis” there is never a measurable pressure gradient.


We have discussed this previously here:
http://www.thisisms.com/ftopicp-139884.html#139886
User avatar
Sotiris
Family Elder
 
Posts: 126
Joined: Fri Dec 04, 2009 4:00 pm
Location: Greece

Postby cheerleader » Sat Dec 11, 2010 11:43 am

Johnson wrote:
cheerleader wrote:and Frank Gehry...


...is, CANADIAN!

And Jimi Hendrix learned to play guitar in Vancouver, Canada, while living with his Auntie.


Dude!
Apologies to my Canadian friends. Assumed Gehry's American since he's been LA forever....and Jimi, well, of course living in Vancouver with your aunt would provide ample time to practice your axe :)

Thanks for the complete release in English, alex. So many factual errors, so little time.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5031
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Jugular » Sat Dec 11, 2010 12:10 pm

If this so-called liberation placebo effect consistenly and regularly outperforms every single form of therapy or treatment, mainstream or alternative, that has ever been attempted in the treatment of MS, then leave us to our placebo and @$*^ off.
User avatar
Jugular
Family Elder
 
Posts: 375
Joined: Mon Dec 21, 2009 4:00 pm

Postby scorpion » Sat Dec 11, 2010 12:54 pm

Jugular wrote:If this so-called liberation placebo effect consistenly and regularly outperforms every single form of therapy or treatment, mainstream or alternative, that has ever been attempted in the treatment of MS, then leave us to our placebo and @$*^ off.



People are shelling out lots of money for this procedure and they deserve the truth. The sad thing is people are saying things like"I felt better immediately after waking up! That is not placebo!" Or "I still feel better six months into my procedure! That is not placebo!". Why? In studies the placebo effect has been felt up to one year. Until a double blinded trial is performed the placebo effect, if we are ever going to get to the truth NEEDS to be considered. How do you know the liberation procedure has outperformed all other forms of therapy? What about the many people who had no improvements or became worse after being "liberated"?
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby Lyon » Sat Dec 11, 2010 1:13 pm

.
Last edited by Lyon on Sun Nov 20, 2011 5:06 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby cheerleader » Sat Dec 11, 2010 1:31 pm

Not to go OT, but Jeff is coming up on 20 months of relieved fatigue, relief of cog fog, relieved heat intolerance, better bladder, no more sleep apnea and no spasms. Dr. Dake said Jeff's relief was something akin to what he'd seen in repairing central venous stenosis and vena cava syndrome. He's even written about it.

Dr. Dake on CCSVI treatment "placebo"
It is intriguing to observe that some of the symptoms of MS mimic symptoms observed in patients with superior vena cava syndrome. Obstruction of the superior vena cava, usually caused by a tumor or radiation, impedes venous drainage of the head and neck. Relief of the obstruction with balloon angioplasty and stent placement, if required, provides swift and dramatic resolution of the symptoms of impaired cognition and fatigue. Thus, it is not surprising that patients with CCSVI associated with MS also report rapid relief of these nonlocalizing symptoms after treatment.

http://vaware.org/images/stories/pdfs/v ... lowres.pdf
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5031
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby scorpion » Sat Dec 11, 2010 1:41 pm

cheerleader wrote:Not to go OT, but Jeff is coming up on 20 months of relieved fatigue, relief of cog fog, relieved heat intolerance, better bladder, no more sleep apnea and no spasms. Dr. Dake said Jeff's relief was something akin to what he'd seen in repairing central venous stenosis and vena cava syndrome. He's even written about it.

Dr. Dake on CCSVI treatment "placebo"
It is intriguing to observe that some of the symptoms of MS mimic symptoms observed in patients with superior vena cava syndrome. Obstruction of the superior vena cava, usually caused by a tumor or radiation, impedes venous drainage of the head and neck. Relief of the obstruction with balloon angioplasty and stent placement, if required, provides swift and dramatic resolution of the symptoms of impaired cognition and fatigue. Thus, it is not surprising that patients with CCSVI associated with MS also report rapid relief of these nonlocalizing symptoms after treatment.

http://vaware.org/images/stories/pdfs/v ... lowres.pdf
cheer


Cheer I am coming up on three years of better balance, less fatigue, and better heat tolerance. Obviously, since I have never been liberated, it is the natural course of my disease. I am certainly not saying Jeff did not benefit from his procedure but because the natural course of each person with MS varies it can not be ruled out that Jeff may have had these improvements regardless of the procedure.
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby Lyon » Sat Dec 11, 2010 2:12 pm

.
Last edited by Lyon on Sun Nov 20, 2011 5:06 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby concerned » Sat Dec 11, 2010 2:42 pm

Lyon wrote:Fighting science so desperately only makes situations surrounding CCSVI seem all the more suspicious.


Agreed.
concerned
 

Postby Cece » Sat Dec 11, 2010 2:47 pm

Lyon wrote:2. Perhaps you're right and we should forget about clinical trials and testing and placebo effect and precede only on first hand impression and the opinions of a few doctors. Of course that's also going to have to be the rule for all other fields of medicine and research.

In a conversation with my MN IR, Dr. Cumming, he expressed that CCSVI treatment seems to be being held to a higher standard or requirement than other surgical techniques being explored and that isn't right, it should be held to the same standards as anything else.
Cece
Family Elder
 
Posts: 9011
Joined: Mon Jan 04, 2010 4:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service