Why is noone talking about it?

[happyandy]

Well,

 

Just read the article from the flat earth society, ooops I meant the MS Society (Medical Advisors comment)

 

http://www.mssociety.org.uk/research/az_of...h/cd/ ccsvi.html

 

Whether or not Zambonis theory is correct or not, I really think that a "jurys out" response would have been more balanced and appropriate.

 

No wonder JK ditched this mob.

 

Andy

[colmmc]

Take a look and regeister

 

you know it makes sence

 

http://www.essentialhealthclinic.com/website/

 

colmmc

[Christina]

I was listening to the News at 4pm today on Classic FM and CCSVI was reported - seems like it's getting a lot more media coverage.

 

Chris

[Bernadette]

Ooh, I'm interested!

 

I'm seeing my neurologist on Saturday, so I'll run it by him, and he can shoot it down in flames.

[Tania B]

Colm,

 

I've registered. Very interesting indeed.

 

Tania

[colmmc]

Excited me,

 

I'm Positively Giddy.

 

colmmc

 

But this still needs signing. by everyone,

 

and everyone you know.

 

 

ttp://petitions.number10.gov.uk/CCSVINOW/

[Lindyloo]

It looks good doesnt it?? Also thanks Solrose for explaining about the veins etc..

 

great news

[Mrem Mac]

OK, I can only explain it in its simplest of ways.

 

Here's a scenario...

 

My mum and her bingo friends got their sinuses drained, the doctor has found a cure for the common cold. The results were amazing, they always seemed to be moaning about one cold or other.

 

It was funny how many people went to this doctor. Poor guy must have been exhausted. The amazing thing was, he was so excited about the discovery, and cutting down common cold symptoms.

 

Some of my mums Bingo friends were still a bit run down, but in general there was a much happier atmosphere when they got together. I saw such a big change I decided to look into it. It seemed so logical, check to see if the person showing common cold symptoms has a blockage, if it's safe to fix, fix it.

 

I was so convinced It could help me too, I rushed to the doctor surgery. The doctor stopped me at the gate. He told be is having sleepless nights and cannot bear to see people going through misery but they are in a middle of a big, but silly argument, and his hands are tied. The screening is not allowed because they done believe it had anything to do with the sinuses because it was different.

 

One group of thinking, claiming it was a common cold, the other saying it was a problem in the sinus area.

 

The doctor decided to look at the sinus and noticed a blockage in the sinus area of his wife. He found the blockage, because he was using better equipment than they had in the 1950's and 1960's. He chuckled to himself, thinking of how technology had advanced so much since he was running around in shorts, as a child.

 

He realized the importance of the removal of the blockage, and could do the relatively safe surgical procedure. The problem wasn't the the screening and treating of the sinus. There was an ongiong argument over it being a common cold or the sinus. He showed them how he did it. He initially tried an experiment to drain the sinus, testing on his wife. She was feeling great for the first time in years.

 

Now it's up for debate whether it is a common cold and they should take medicines, or they use this new scanning equipment which was unavailable when they were testing in the 50' and 60's.

 

The crazy thing was, I could not get screening for a sinus problem because they say it's always the cold I have, and the two are unrelated.

 

I want screened, so that I will be ready when they do get around this ridiculous argument. This Argument could wait so I suppose I will have to endure it for another 5 years.

 

...scenario over.

 

-----------------------------------------------------------------------

 

Fact. Dr Zamboni has found a blockage.

 

Fact. Technology has advanced enough to allow us to see the blockage.

 

Fact. People have see improvements and results are well documented.

 

Fact. The screening can be done.

 

Fact. The surgical procedure can be done.

 

------------------------------------------------------------------------

 

 

Why can the patients not get screened for CCSVI? It is safe, so why can they not be screened? Checking for CCSVI, is essential and there is no reason for the delay. If screening can be undergone, at least we will have more information at hand and patients will have quicker access to treatment, if this proves conclusive.

 

If this is a relatively safe surgery, why are they not looking to see if the patient has a blockage? Blockages are not normal, any plumber will tell you that. Any model who got a nose job will tell you that. I had my appendix out, It wasn't causing me any problem. I had an rare operation in the same area, and they took my appendix out. I felt better and didn't question if there was a connection.

 

If the blockage can be removed do it, just for the sake of doing it. It's not normal and may, or may not, be linked to MS.

 

Do people think Dr Zamboni is crazy?

Obviously not, some of the most talented doctors in the world are going crazy over this theory. It's as if a light has just been switched on. Have we been looking in the wrong direction, so much so we have forgot the real victims in this argument, the MS patients themselves. It would be a crazy option to not have mass screening, immediately. It is crazy if the people who have this blockage cannot to have it safely removed because of an argument.

 

I, like others have seen more that enough evidence to support this theory. MS is a degenerative disease, and MS patients are scared to wait for the argument to resolved, as this is wasting valuable time that they may not have left.

 

Please support logic and read everything you can on CCSVI.

[Scully]

Good post. Well done on the theory comparison.

 

I do think it's criminal that patients have to suffer and wait for 'theory's to be tested and tested again, until some patients get the benefits.

 

I understand why testing is needed, but why not do it before.....rather than later. I guess it's all down to money!

 

Scully

[Lindyloo]

Well done Mrem Mac your post is really inspiring for us all to get talking to everyone we know who can do something....If this theory turns out to be a fantastic cure for MS look at all the money that they are spending on DMD's when a simple test can show if someone has a blockage or not..

[paulamac1]

56% of MS patients and 24% of healthy people ? Could it be a symptom of MS more than a cause ?

[colmmc]

If you go to thisisms site and read cheerleaders post you wil understand why they got such disappointing results figures of 56%.

Statistics and more damed lies.

 

Colmmc

[happyandy]

It wasn't the 56% figure that caught my eye it was that normals were about 24%. I still think that Zamboni is on to something. The iron deposits on the lesions ( which nobody argues about, they are talking about retuning the MRI scanners to use this fact as a positive dx ) come from somewhere.

 

colmmc if you can provide a link to cheerleaders post please, I would be most grateful, I couldnt find it on the forum

 

Andy

[Tania B]

What does it actually say on the thisisms site (cheerleader's post) regarding the statistics? Can you summarise for us....please.

 

Take a look too at today's RSS News Feed topic on the subject.

 

Yesterday there was a short feature about CCSVI and the trial on the BBC breakfast show. The MS Society was saying there needs to be more research. How much is enough I wonder. BBC breakfast show link

 

Tania x

Edited 12 Feb 2010, 1:56 pm by Tania B

[colmmc]

I In a bit of a rush today ,can't find the post now but it basically said they only look at the jugular veins and not the azygous vein or the Brachidcephaliic ( sp on both ).

Dr simka's figures are much more positive at 95%.

 

Dr. Marian Simka - Hamilton Canada CCSVI Workshop "about 250 MS patients examined, venous abnormalities found in ~95% of patients examined" -

 

sorry got to run / stumble

 

colmmc

Don't forget the Petition

 

http://petitions.number10.gov.uk/CCSVINOW/

 

We have really got it rolling today.

 

http://www.ms- mri.com/docs/Simka-hamilton%20- ccsvi-1.pdf

Edited 13 Feb 2010, 10:53 am by colmmc

[Tania B]

I had to look up the azygous vein and found it here: Azygous vein. I don't know much about anatomy and I'm fairly sure many of us don't either. This will be a sharp learning curve I suspect.

 

Tania

[Michelle]

It's quite a unique vein then.

 

 

Michelle

[Christina]

It is Michelle - mainly sited on the right side of the body I seem to remember.

 

Chris x

[Michelle]

Came across this on the net

 

 

http://uk.news.yahoo.com/5/20100210/video/...to-37e89e1.html

[gingermagic]

Hello all.

 

Wow this thread is taking off, big time.

 

I have been scanned for CCSVI in this country. They found minor narrowing but nothing that would cause real problems. However the interventional radiologist has said that the scans should be put on file, to await further reaserch.

 

Gary from CCSVI UK told me that if the interventional radiologist in question is not trained to identify CCSVI, it is almost impossible to identify.

 

We need more research on this. It's like Col said to me, 'It's like they have been looking for the car keys in the wrong place, again, again and again....'

 

Auto immunity is an effect, not a cause. I challenge any neuro to slip out of their ivory tower and present proof that this is not the case!

 

First Hughes syndrome, now CCSVI. The direct cause of MS may be demylination, but demylination has a circuylatory cause.

[Bernadette]

Came across this on the net

 

 

http://uk.news.yahoo.com/5/20100210/video/...to-37e89e1.html

 

 

"If the theory is proven, treatments will have to radically change."

 

So, that's that then!

[Christina]

I wonder what will be said of those MS patients who don't have the narrowing or only minimal narrowing that could not be responsible for such damage? It will be interesting to see how this all develops.

 

Chris x

[gingermagic]

I wonder what will be said of those MS patients who don't have the narrowing or only minimal narrowing that could not be responsible for such damage? It will be interesting to see how this all develops.

 

Chris x

 

Chris,

 

I am one of the people that you talk of at present. The interventional radiologist says I have no significant narrowing to speak of. In fact he said that he has seen greater narrowing in people without MS.

 

Zamboni and Simka have found multiple reasons for the restriction of blood flow. Narrowing is just one. Membranes within veins are another, disfunctional valve are another. All result in disfuctional blood flow.

[Michelle]

So when the MS specialist said my problems were circulation related,he could have been on to something. Hmm!

[Christina]

It certainly sounds like a possibility Michelle.

 

Chris x