First liberation procedure in UK

cheerleader · Post by **cheerleader** » Tue Nov 03, 2009 3:13 pm

Bob-Alex is referring to some private correspondence, which I also received. Not for posting. I'm sure it will all be worked out-
cheer

Lyon · Post by **Lyon** » Tue Nov 03, 2009 3:30 pm

MrSuccess · Post by **MrSuccess** » Tue Nov 03, 2009 10:04 pm

any chance some details of what is happening can be posted.

I'm pleased that our good doctors - Z & D - have apparently rocked the boat.

To have their work ignored .....would be a concern ........

My gut feeling is money , not new solutions ....is at the heart of the matter.

CCSVI research is going to divert some serious cash that had/is in the pockets of drug research .

The solution is to contact - on masse - the MS Society and ask that CCSVI be funded. Funds raised by grassroots supporters.

Mr. Success

cah · Post by **cah** » Tue Nov 03, 2009 10:51 pm

I think what has also to be done is to convince more People, MSers and Non-MSers, at least that CCSVI has to be researched. There are millions of MSers and caretakers out there, but only a minority is online and only a minority of this minority is here. Not a single neuro will tell his patients about it unasked until it becomes standard procedure. This may take several years - or never will be if there's to much opposition and not enough people (and money) to fight for it. So it's not only about convincing professionals but also to grow the grassroots. Don't be afraid of being called crazy! Tell it to literally everybody!

GiCi · Post by **GiCi** » Wed Nov 04, 2009 8:22 am

cah,
I take your point but I would not be as pessimistic as you seem to be. As soon as a minimum of two centres publish a well conducted study that demonstrates beyond doubts that the liberation procedure is followed by an improvement in the condition of MS well beyond the spontaneous fluctuation of its natural course, and better than that obtained by the action of drugs or stem cells treatment, then a chain reaction will occurs and everybody will try to jump on the wagon.
I predict that a very large number of neurologists will have a lot to apologize for in the future.
In the mean time we have to wait (which does not mean cease to be active in spreading the news as much as possible).
GiCi

ozarkcanoer · Post by **ozarkcanoer** » Wed Nov 04, 2009 8:38 am

I am participating in Dr. Haacke's MS-MRI study. On Dr. Haacke's website he states that this currently preliminary study that I am involved in is a precursor to approaching MS societies for more research funds. Remember that the NMSS said that they would fund any CCSVI study that showed promise. I'm not sure who is funding Dr. Zivadinov's study.

cah · Post by **cah** » Wed Nov 04, 2009 9:26 am

GiCi,

totally agree with you, and I'm the opposite of pessimistic...

It's just that, at this time, neurologists can but do what's standard. It will take some years until the CCSVI diagnosis and treatment will become that.
So, the more patients tell their doctors instead of the other way round, the faster this process will be.

But perhaps this is a very "german" point of view. Here, almost everyone has an insurance which pays 100% of the costs - as long as it is standard procedure. People don't even know how much it is - they don't get the bill at hands. Everything is very well organised. People distrust everything which is not paid by insurance.

And, well... I can't deny that I'm slightly impatient

Rokkit · Post by **Rokkit** » Wed Nov 04, 2009 2:16 pm

GiCi wrote:I predict that a very large number of neurologists will have a lot to apologize for in the future.

And I predict there will be much more tap dancing than actual apologizing.

mrhodes40 · Post by **mrhodes40** » Wed Nov 04, 2009 4:42 pm

tap dancing instead of apologising

Indeed! My guess is that before there is even proof of this it will be framed that "CCSVI is the long lost MS trigger" and nothing more; ie CCSVI is not the cause of MS lesions, the immune system is the cause just like they said. I bet my entire savings all 3 cents that

As soon as a minimum of two centers publish a well conducted study that demonstrates beyond doubts that the liberation procedure is followed by an improvement

I believe as soon as there are two studies we may very well be able to demand treatment. The reason is that for some time the unproven hicy treatment has been covered by insurance with JH requesting it based on the small work already completed. The number of actual patients in completed studies on that is shockingly small--and not blinded or controlled either---snd on much fewer than liberation patients already in the pipeline.

There are differences though, the HUGE one is that hicy works on the autoimmune theory and everyone has already sort of decided that is the way to go, so even with the lack of robust large blinded studies they are able to get insurers to agree it is going to work

But the thing CCSVI has going for it is documentable stenosis. IMHO---hope!!--- they can hardly look at documented stenosis accompanied by even one study that show removing such stenosis helps and say no. The evening news loves stories like that.

ozarkcanoer · Post by **ozarkcanoer** » Wed Nov 04, 2009 5:22 pm

OK, the immune system most likely DOES cause the lesions. But the most important thing is KNOWING THE TRIGGER !!!!! Imagine the sudden shift in thinking !!! I met with a neuroscientist today and mentioned the possibility that if CCSVI is true then an animal model can be created. And with an animal model, based on CCSVI, the whole thing will unravel like pulling a thread on your sweater, LOL. Knowing that microorganisms are the TRIGGER of many diseases was a shift in thinking in the 19th century. If CCSVI is "proven" (whatever that means) it will be like the germ "theory".

I say, give the immune system it's due, the lesions are caused by the immune system. But CCSVI (if proven) will be HUGE. I'll bet you all a pizza on that !!!!

sou · Post by **sou** » Thu Nov 05, 2009 2:23 am

Hi.

I don't care who is responsible for the lesions. I only care about who is responsible for disability.

Let me think as an "end-user". Lesions do not even cause a single aesthetical problem, since they are very well hidden deep inside the skull and the spine. Are they responsible for disability? Nope! Only partially and most of the times it is reversible.

So who is responsible for long term disability? Iron! How did it get inside the CNS? Did the evil T lymphocytes carry it there? No. They only reacted to such abnormality, possibly attracted by macrophages.

So, who is causing the lesions? It depends on the meaning of the word "causing". For me, it is iron. For language-abusing neurologists, it would be still the immune system. But iron is the double trouble!

sou

GiCi · Post by **GiCi** » Thu Nov 05, 2009 5:47 am

sou,
Blaming the deposition of iron in the brain as responsible for the disability would be like blaming the loss of blood from a wound for the consequent death by exanguination. Of course at the end both cause the damage but what is the cause of the cause? CCSVI in the first example, a knife in the second one.
Abolish the inflammation due to stagnation and reflux of blood in the brain and iron will have no reason to accumulate, avoid to be cut and you will not lose blood.
GiCi

sou · Post by **sou** » Thu Nov 05, 2009 9:09 am

Hi GiCi.

That's exactly what I meant. Your post completes my thoughts, but without the sarcastic tone...

sou

acol · Post by **acol** » Fri Nov 06, 2009 2:57 am

The more you read the more you realise you don't know! I have been trying to read through as many threads as I can prior to seeing my doctor next week. Prior to doing this I understood that the MRV was more or less the gold standard as far as determining whether or not venous stenosis was present. However, on the thread 'Ok MRV done, is these pictures normal to you' Blitzi produced photos of the scan which were said to be normal - no stenosis.

This seemed to indicate that an MRV is also dependent on the skill of the operator and may not necessarily produce absolute confirmation of CCSVI. This thread went onto discussing the need for further tests, possibly a doppler test.

I do understand that a doppler test is very dependant upon the skill of the operator and a need to follow some established protocols. I have downloaded Dr Simka's pdf document suggested by cheerleader.

And so my question relates to what test I should hope to get from my doctor. I recognise the huge hurdle that I may have to jump over just to get my doctor to send me for any test. If my doctor is receptive then the easiest (and presumably cheapest) test would be the doppler. My worry here would be one of operator skill. However, if I was lucky enough to persuade her to refer me for an MRV then will the test provide me with the evidence to go for the more invasive Venogram - as a precurser to surgery?

This Is MS Multiple Sclerosis Knowledge & Support Community

First liberation procedure in UK

CCSVI never to be universally treated?

Getting the NMSS and other MS societies involved

Re: CCSVI never to be universally treated?

sou