Spreading the news

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

Spreading the news

Postby GiCi » Mon Sep 14, 2009 11:15 am

I belong to the group of people who believed that prof. Zamboni's original idea of the correlation between CCSVI and MS was right, and my belief has grown even stronger reading his subsequent publications and after the congress in Bologna.
We need to accept the fact that even an 100% correlation does not prove cause and effect. In other words, the finding that all MS patients have anomalous drainage of venous blood from the brain does not scientifically mean that CCSVI is the cause of MS (although I strongly believe this to be true).

The population affected by MS is a vulnerable one: to be diagnosed with an incurable, although slow, disease which has unknown proven cause is at least devastating.
I understand the enthusiasm of people who would like to divulge the good news of a possible cure with any means all over the world and to force the medical profession to take the new discovery into serious consideration and to act.

I tried to do that in my hospital and I met a wall of scepticism or indifference.

Unfortunately it seems that we will have to wait for the evidence, coming from different researchers, to come trough. I understand that this is painful because so many patients will see their treatment delayed, but I do not see how a popular movement of support can change the normal proceedings of scientific progress.
It may also be unfair to raise eccessive hopes in the public. It would also be unfair to tell people that they could be cured if the medical profession accepted Zamboni's theory. They would feel to be the victims of the system and probably be quite resentful.

I am sure the solution will come: it is only a matter of time.
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Postby cheerleader » Mon Sep 14, 2009 11:33 am

GiCi-
We try to stay clear of the "cure" word around here...but are not always successful. We want to spread the word that there is a direct correlation between CCSVI and MS, and that there needs to be a coalition of vascular doctors and neurologists working together and looking at Dr. Zamboni's research.

Speaking personally, all of my efforts have been to explain CCSVI in layman's terms, to translate the medicalese and research into understandable language, so that any MS patient can have a dialogue with their doctor, and perhaps be tested and treated for CCSVI. The word we need to spread is not "cure"....the word we need to spread is "education!" My hope and struggle is to find more doctors willing to explore this.

A well-educated patient is a patient that is proactive, hopeful and participates in the healing process. But your point is well-taken-
The population affected by MS is a vulnerable one: to be diagnosed with an incurable, although slow, disease which has unknown proven cause is at least devastating.
I understand the enthusiasm of people who would like to divulge the good news of a possible cure with any means all over the world and to force the medical profession to take the new discovery into serious consideration and to act.


it's a delicate balance between hope and realism-
thanks,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Brainteaser » Mon Sep 14, 2009 3:48 pm

Restraint is the key - as someone who has tried almost everything over many years, disappointment is the norm. But if we don't try, then things won't change.

But with CCSVI things are slightly different - it seems to be that MS is aligned with CCSVI - nothing more, nothing less (at this stage).

So the focus at this point is to correct our CCSVI - and if there are consequent health/MS improvements, then that is a bonus.

However what is just a little concerning is where members of the mainstream medical industry are saying that CCSVI is unusual but not a problem - the body has the means to correct itself, which is some feedback I received recently. Maybe time and education might alter this view - we can only see.

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Postby GiCi » Tue Sep 15, 2009 9:49 am

cheerleader,
I think I have amply demonstrated that I am aware that Zamboni himself does not adventure in talking about a possible cure of MS via a liberation procedure.
In my post I was trying to express esactly this, i.e. that we believers in CCSVI must be careful in avoiding that our enthusiasm transmitted an unrealistic and unproven hope to MS patients. I wanted also to point out the slow process with which the medical profession adopts new theories and procedures: evidence must become overwhelming before significant changes in medical practice take place.
I thank you for your comments,
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Postby Ana » Tue Sep 15, 2009 10:42 am

I also think there is no good being missionaries for CCSVI. But we must be present. E.g. the biggest German MS forum has a new thread about Boulogna and a well-known professor posted some short remarks that MS is surely an autoimmune sickness and that medication must be developped on this basis. He ignored the arguments for CCSVI and tried to cut off any discussion. So I couldn't help answering his post. One of my thoughts was that many others might read this and if the post of the expert stays unanswered they might believe that all this about CCSVI is rubbish.

So I think we should take care that the door remains open, i.e. that people got aware of the theory and are able to find out more about CCSVI by themselves.

I found this forum via a German forum and found the German forum via another forum by the mere catchwords "venous MS". This made me curious and I started a search via Google. Then I spent about 3 days with reading and decided afterwards for me personally that this theory is the only logical explanation for MS. I claim to be a rather logical person so all the other theories and treatments seemed to be absurd.

I'm confronted with MS only since a very short time though I'm suffering from the symptoms since years till I found out what it was.

So my first reaction was "MS?! What kind of sickness is that? What's in the internet about it?" Then I searched and read a lot and got quite puzzled. Before I had the rather naive attitude that in case of a sickness -apart from cancer- you go to a doctor. The doctor finds out very fast what kind of sickness you have and then gives you some medicine which helps or at least relieves your suffering as the doctor is 100 % on your side. Naive, isn't it?

Well, in case of MS that view of life crushed for me. There was nearly a dozen of different medicines, but they didn't seem to help or no-one could tell whether taking them changed anything. MS was broadly claimed to be an autoimmune sickness but apart from some artifically infested mices there was not more proof. One could also claim that MS is a heavenly punishment, maybe for sins in a former life. And the worst, you couldn't trust every doctor as some seemed to be payed by the pharma enterprises.

So when I read CCSVI I got very excited as there was it, the logic I had been searching for. And moreover I got the feeling that there were doctors really caring for their patients.

Sorry if this is a bit off-topic and probably not in perfect english, but I wanted to tell this so much.
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Postby zap » Tue Sep 15, 2009 10:46 am

I dunno. I am all for hope. I think it is justified. No treatment has shown the promise that this does.

There is growing evidence of more than mere correlation - when people experience relapses after Liberation, they were all found to have restenosed. People with stenosis but no MS diagnosis have come down with MS. 100% of MS patients are being found to have stenoses. etc etc etc

What more do we need before it is time to jump up and down and scream from the rooftops?

While this might not be part of the normal scientific process, let's face it - science is not done in a pure vacuum, and public pressure can and does have a huge impact. Also, there are reasons to rush - we are all deteriorating, and there are good reasons to think that opening up our venous blockages can stop that. (the MS deterioration, not normal entropy and death of course!)

I am very much in favor of grassroots organizing and building momentum and pressure on the medical establishment to engage with this theory ASAP.
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Postby blitzi » Tue Sep 15, 2009 11:23 am

One very big thing is that medical treatment business for MS is HUGE!! hundred of hundrer millions dollars world wide, maybe even billions

ALL big manufacturers of MS drugs will do all they can to prove this thing wrong!
And they have money to do so... many people even doctors say many things, when they get little bonus from medical company.

(Sorry for my bad English skills)

And yes, new to here. Or do I have to say new to write here because I have read this forum about 8 months now :)

So hello to everyone.
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Postby zap » Tue Sep 15, 2009 11:41 am

Yeah, it's terrifying to think of what well-financed, organized opposition to this theory could do - and would do, with the billions of dollars at stake. It will be like the MS neuro in Italy said to Cheerleader - "If this is true, I'll be out of a job" - but times a few million, as an entire network of pharma-based industries and organizations fight to survive, fight to preserve their pipeline of funding and profits.

In my opinion, if we're not looking out for ourselves and pushing up from below, the odds go down significantly that this paradigm shift will take place sooner than later.

There is a lot of corruption in the system ... anyone see this recent article? Just the tip of iceberg of course, but interesting:

http://www.nytimes.com/2009/08/19/healt ... .html?_r=3
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Postby cheerleader » Tue Sep 15, 2009 12:20 pm

Welcome to Ana and Blitzi and all the new followers of CCSVI from around the world-

I know it seems like an uphill battle, but remember...Dr. Zamboni's work was just published in December 2008! So, things are actually happening quite quickly, thanks to the internet, and Dr. Zamboni's tireless commitment to MS patients. He and his dedicated team are doing the work of 1000 doctors, and we all need to keep them in our good thoughts and prayers.

The best defense is a good offense....the best patient is an informed patient. I have listed some talking points and responses to dubious neuros here:
http://www.facebook.com/note.php?note_i ... 210&ref=mf
It is geared towards Americans, but all can read it and take the info to their doctors. Yes, it will take years and years of studies to change the standards of procedure for MS. BUT, if you have venous stenosis, you can have that diagnosed and corrected by a vascular doctor, without the need to prove it is causing your MS.

Venous occlusion correction is covered by insurance in the US, because it is known to cause harm to the organ the vein drains. This is accepted by the medical community. This is why I found Dr. Dake on my own, this is why other MS patients can talk to doctors and ask, "Can we test to see if I have stenosis in my jugular or azygos veins?" That is the first step. Anyone could see my husband had completely occluded jugulars, with tiny collateral veins and terrible reflux...he needed help!

GiCi...we 're on the same side! I'm afraid you thought I was chastising you...I wasn't. We both agree that the language we use needs to be tempered with realism, and not to give any false hope. But we also need to share this and encourage other doctors to examine this paradigm for themselves. A delicate balance, but we'll find our way!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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CCSVI

Postby GiCi » Wed Sep 16, 2009 10:53 am

cheerleader,
I know we are on the same side and I welcome the newcomers to the forum.
I agree that we have to put pressure on the medics and that well informed patients are essential to the cause.
In this respect your committment and actions have all my admiration: a few people like you and the battle would be won in seconds!
The most important point you made is that the treatment of venous obstruction of any organ in the body, including the brain, is an accepted procedure and therefore covered by medical insurance. Your advice to MS patients to demand that their venous drainage from the brain be checked is absolutely spot on. I hope many people will take it on board.

I am fully aware of the power of pharmaceutical lobbies, which make a huge profit by selling drugs for MS: evidence will have to be accepted by them in time.
I am campaigning restlessy in my part of the world and I will let you know as soon as I achieve any breakthrough. At present the wall of resistance to change seems to be pretty solid.
Let's keep working cheerleader, you are throuly inspirational.
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Re: CCSVI

Postby Rokkit » Wed Sep 16, 2009 11:50 am

GiCi wrote:I am campaigning restlessy in my part of the world and I will let you know as soon as I achieve any breakthrough. At present the wall of resistance to change seems to be pretty solid.


Wow, if a cardiac surgeon is encountering a solid wall of resistance, we are in for a long haul.

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Postby LR1234 » Wed Sep 16, 2009 12:16 pm

Yes, but Gici is a patient too. I think Dr's assume that its hard to be objective when you are the one that is suffering.

On a good note my Neuro is coming round to the idea that there may be a vascular problem in MS. He still wants to see others replicate the tests and to establish whether there is a benefit in treating though.
He is doing trials his own trials now on cerebral perfusion and will have the results next year.

Finally the dr's in the UK are coming round to it all (I have e-mailed him and the 2 vascular specialists I saw and introduced them and encouraged them to work together! fingers crossed.
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Postby Waken » Wed Sep 16, 2009 3:47 pm

I, like most posting on the CCSVI threads, solidly believe in a CCSVI - MS connection. I have a neurologist who is very open minded and he never subscibed to the auto immunity theory. He always thought the immune response was a secondary response and that something else occurred first. I sent him all of the papers written on CCSVI but I have no clue if he has read them or if he agrees. I will have the fun of chatting with him this friday during my usual 6 month appointment. I just hope he is not as dismissive as many of the neurologists used by posters on this website. Wish me luck.
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Postby Needled » Wed Sep 16, 2009 4:14 pm

Good luck Friday, Waken. I had a dentist appointment last month and gave her Dr. Z's Dec. 2008 and the Charring Cross papers. I had to go back today, and she said she read them and thought the whole idea was extremely interesting and it seems like there's something there worth exploring more. She passed them along to a doctor friend of hers and she said he had never heard of CCSVI, but he has now. :D I gave her Cheer's notes on the Sept. 8 conference and a copy of Dr. Simka's PP presentation, and when Dr. Z's paper comes out next month, I'll drop that off to her as well. She said in today's world patients have to manage their illness and be their own advocates. That's been said so many times here. Imagine my dentist is more interested and open-minded than my neuro! 8O I'm not totally shocked, though, because she's great and is always interested in what's happening with me, all of me, not just my teeth. It's all one body and it's all connected.
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Postby mrhodes40 » Wed Sep 16, 2009 5:28 pm

I have a neurologist who is very open minded and he never subscibed to the auto immunity theory. He always thought the immune response was a secondary response and that something else occurred first


as a comment my FIRST neuro had this point of view also, they ARE out there just not in sufficient numbers to influence the overall opinion of the neurology community at large.

But if there's enough of them it will help the switch in what "everyone knows" I read a paper one time that suggested the tipping point is 30% as soon as that level is reached a new idea gains momentum but before that it remains a "finge" idea.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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