Has anyone had CCSVI treatment?

Everyday living
81

Where does this come from please? It is not in the link you provided.

All too many people seem convinced that CCSVI and MS are intrinsically linked. This appears to be particularly prevalent in the people who post in favour of CCSVI. I suppose it is natural given the original tenet of CCSVI, but it is unhelpful. If CCSVI is a disabling condition that is readily treated, then it should be treated irrespective of the patient having MS. However, the data are not convincing. Prof Zamboni reported that 100% of MSers had CCSVI, but that 0% of controls did not. These data have not been replicated. Moreover, CCSVI has been found in normal, healthy people. If we add the fact that ā€œliberationā€ has very mixed results, it suggests that the diagnostic criteria and methodology, the condition itself and the procedure in different patient groups needs much more research before it is rolled out.

82

Firstly Hi to Sybil and welcome aboard.

I had a doppler scan done 2 years ago as well and like you, stenosis was found in my veins. I was actually on the waiting list for Liberation through a major hospital here in Melbourne but the Interventionist radiologist who was performing the procedure got banned from doing it by the hospitalā€™s ethics committee.

My neuro was on the ethics committee of that hospital and told me to wait until proper trials were conducted into it because some of the diagnostic results were a bit dodgy. She is part of the international research team into CCSVI and the more data she has collected from the various trials under way around the world the less convinced she is that CCSVI is implicated in MS at all and that the protocols for substantiating venous insufficiency are a bit dodgy too. So it sounds as if Canada is being very pro=active in lobbying for further trials.

Which leads me into my reply to rizzla2012 and welcome to you too. Gosh, we are getting a lot of new people all of a sudden. This is great.

Rizzla I am not sure how the youtube link has any bearing on the 7 out of 8 veins scannedā€¦ But to try and further clarify my pointā€¦

Zamboniā€™s original results showing that 100% of MSers have blocked veins has not been duplicated elsewhere and some researchers are now concerned that the protocols he developed for doppler ultrasound are flawed. So there may be many people being diagnosed with a condition they donā€™t actually have. My veins were subsequently rescanned and no abnormality was found but this time I did not go to the clinic specialising in Zamboniā€™s protocol. The scanning was done as apart of neurosurgical operation I needed on my neck due to an accident. But being absolutely positive that my blood flow was not impaired was vital to my survival so I am pretty confident about those results J

So if the diagnostic criteria are potentially flawed isnā€™t it important to run trials, to establish exactly WHAT CCSVI is or isnā€™t and how to accurately diagnose it and then establish if it has any bearing on MS?

TBH, I really donā€™t understand why people get so angry when the possibility that CCSVI may warrant objective study is raised. Surely that is in the interests of the current supporters of CCSVI? If the theory is valid, trials will bear this out and validate it. Isnā€™t that what you want???

Cheers,

Belinda

83

I think, Belinda, it is more of a knee-jerk reaction. Sort of:

"How dare they (whoever ā€œtheyā€ is) ask that CCSVI be subject to objective study." Possibly because those folk who have parted with good money for a private treatment do not want to face the possibility that they got it wrong.
What do we know?

  • Some people have had the treatment and claim to have obtained some benefit.
  • Some people have had the treatment and claim to have obtained no benefit.
  • Some researchers have queried Zamboniā€™s findings.

Whammell provided a URL link to several studies currently being undertaken to research the link - if such a link does exist - between MS and CCSVI. That is clear proof that the scientific community do take CCSVI seriously. The collective results of these studies should offer a definitive assessment of the benefits, or otherwise, of CCSVI treatment for PWMS.

My attitude is much the same as **rizzoā€™**s, and it is worth repeating:

That is, balanced information, no hysteria, no shills, and no trolls. And the computer savvy amongst us will know what a troll is.

Geoff

84

Can I remind you that you are using a service provided for free by the MSS and point out that weā€™ve let this thread run uninterrupted for six days?

Also, Anon, the general idea is that forum members use that facility for sensitive posts and expect to be able to deal with a recognisable on-line profile whenever possible.

Greg [admin]

85

Hi, I donā€™t want to get into any lengthy discussion, I have not had ccsvi, I remain interested in what becomes of it longer term. If it had been around when I was newly diagnosed in 1995 I think I would have been tempted to go for it, but now with 2 children I want to just hang on in there, and not take any unnecessary risks, however if I was to dramatically worsen, I would be tempted to give it a go. Thatā€™s how I feel. Cheryl:)

86

[quote=ā€œgoodvibeā€]

Goodvibe, your attitude is really quite astonishing. Talk about biting the hand that feeds you! I am sorry that you are so troubled by paranoia and conspriracy theories about the MSS, and feel so hostile towards the organisation that is hosting this forum that you make an attempt at veiled threats against it (ā€˜some of us get a little heads upā€¦ā€™ - Oh, for Goodness Sake!)

I for one do not welcome that kind of hostility on here. Would you please try to control yourself.

Alison

87

Goodvibe, if this is the kind of aggressive rhetoric you & your buddies were using on the MSS Facebook page then Iā€™m not surprised CCSVI is now a banned subject there - youā€™ve obviously not learned from that lesson. Chill out & take a dose of your peace & love. If you could calm down people may be more inclined to listen

88

[quote=ā€œgoodvibeā€]

I have no idea where you got the idea that I was acting like a child. I am deadly serious.

Do you retract your suggestion that I am paid to suppress personal testimony on this website?

89

Goodvibe,

You seem to have lost your peace and love rather badly. I did NOT say that I believed your response to the CCSVI treatment was ā€œfictionā€. I actually said, ā€œI am not disputing you have had a remarkeable improvement in your MS and of course I am pleased for you.ā€

I also said that, "It may also well be that the CCSVI procedure did work. But we donā€™t knowā€¦

90

Oh dear

A more inapropriate username is hard to imagine

91

Hello again goodvibe,

You must be using the revolving door to leave the building.

I donā€™t think any body IS claiming, ā€œMS is absolutely due to the immune system.ā€ I think we all recognize that there are several actions involved. However the immune system is clearly shown to be significantly involved as in this study.

It isnā€™t difficult to find research papers to support this theory. Google is an incredible aid to informed opinion but since you donā€™t seem to be able to do your own research I am sure many of us will be delighted to help you outā€¦

Around 30 genetic risk factors for developing multiple sclerosis have been discovered by a UK-led team.

It brings to more than 50 the total number of genetic clues to the disease.

The research, published in Nature, will help identify risk factors and perhaps future treatments or even a cure, said the MS Society.

Most of the genes are linked to immunity, backing the idea that the disease is triggered when the immune system turns against itself.

Genes are only part of the story, however, with other factors, such as vitamin D or a viral infection, thought to play an important role.

The study, carried out by a consortium of international researchers, led by the universities of Oxford and Cambridge, is the largest yet into genes and MS.

It looked at DNA from almost 10,000 MS patients, and more than 15,000 healthy controls.

Twenty three known genetic variations, common in the general population, that give a tiny increase in the risk of getting MS were confirmed, and 29 new ones identified.

Another five are strongly suspected as being involved, bringing the total number of genetic variations associated with MS to 57.

Professor Alistair Compston of the University of Cambridge told the BBC: "This is suddenly a big new number of genes to try to understand.

ā€œ80% of the genes that are implicated by the 57 ā€˜hitsā€™ are immunological. This shouts out that this is an immunological disease at the beginning. This is a very important confirmation.ā€

Belinda

92

Mr Campalani was one of the speaker at the LDN/CCSVI medical conference in Dublin last September. Although is a vascular surgeon and did speak a little about the safety of the procedure he spoke mainly about the results the procedure had given him. He also has a great sense of humour.

I find it so reassuring that so many doctors are now speaking out about the many injustices our current medical system is forcing on people. Clearly he could just shut up and just do what is best for his career but no he and many others are speaking up.

93

To goodvibe.

I am still waiting for either a retraction or an apology for your suggestion that I am paid to post on these boards.

In case you didnā€™t know, things that people say on the internet are covered by libel laws.

I am serious. I want either a retraction or an apology.

I am a scientist with MS who contributes to these boards on an entirely voluntary basis and without any direction from anyone but myself. My full name has been used on these boards on several occasions. That means that it is not only my username that is defamed by your suggestion; it is also my professional reputation and credibility.

94

Am I right in thinking that the ā€œconferenceā€ referred to above only lasted 1 day?

Clearly there was not much to be reported that was not said several times before. Of course, a real medical conference would have made the papers available on the 'net by now, and certainly published the proceedings. But then, it was not a real medical conference, was it.

What sort of ā€œresultsā€ did Mr Campalani talk about - the several thousand Euro that he gets from each procedure? If it was to do with results in terms of patient benefit, then could we please have a reference for the paper?

Geoff

95

CCSVI and the Liberation proceedure is on my to do list before I am paralyzed below the waist.I spent Ā£1100 on an MR Venograph two years ago in Frankfurt and have a big stenosis in my right jugular and the left is fairly knackered as well. Iā€™ll be having stents as well,'cos my veinous system would just close down again.

Iā€™ll take this oppourtunity to thank ALL the people who voted to get rid of the RTTR system on the old website This new system is soooooooooooooooo easy to followā€¦MEGALOL of sarcasm,as this thread is unreadable to my three neurons. However,congratulations to those who have got so involved,personal and distracted for so long.

It is a very personal decision to have the Liberation and if I was a Newbie I would wonder what all the fuss is about on here.If you think it might help and can afford itā€¦

Wb

96

[quote=ā€œgoodvibeā€]

Hello Goodvibe.

You certainly have spread some good vibes with me and the rest of the New Media team. Not sure what you mean by a ā€˜snake in the grassā€™ though. Could you elaborate?

This service is paid for by the people who donate and raise money for the MS Society. Itā€™s their generosity that allows us to provide it free of charge to people affected by MS.

As of last year, the MS Society is both a registered charity and a registered company. Many other charities have the same set up - Age UK, Terrance Higgins Trust, NSPCC to name three.

We made this change to protect our members from financial liability. This means if the charity was to get into financial difficulties, the company would be liable rather than the Societyā€™s members. We are not allowed to make a profit and must use our resources only for charitable activities

As to your comments on wages etc yes, we do get paid and yes the Society does give staff the option of a pension fund. As far as flash hotels and company cars go, I must be missing something. Maybe Iā€™m not mates with the right people hereā€¦

Bob Barbour

Head of New Media

97

As stated previously, there are only a few regular members of these boards who have had the procedure done. It is an absolute doddle to find testimonies about CCSVI on the internet, so if you are interested in personal statements, I suggest you simply google it. Please be aware that people who have had neutral or negative results do not tend to post.

Also, the nature of a forum is identical to that of a conversation - it is fluid. Indeed, if you look at any forum, you will find that many posts do not directly answer the original question. I canā€™t see any productive or fair way to prevent this. Perhaps you can? Iā€™d be interested to hear them, and what effect you think they might have on the forum and its community.

98

Iā€™m sorry I gave you the impression I was arguing. Actually, Iā€™m quite confused by this. Why was pointing you to a place where you could get what you were asking about arguing?

99

Ah! Thank you for clarifying it

100

Goeff

Goodvibe put the link up with Mr Camparniā€™s results in his own words. Whilst he would no doubt be qualified to perform the procedure he works for the NHS which as you no doubt know does not currently offer the procedure.

I am aware of your views about both LDN and CCSVI conferences, I guess we just need to differ in our views on the subject rather that start yet another argument upsetting people still further.

I am rather outside the CCSVI movement. I went to the MSS discussion on the subject and talked to the protesters outside MSS London and am of course aware of other similar protests around the world. They remind me rather of the protests outside the GMC during the time of the Andrew Wakefield ā€˜trialā€™ - placards and all that.

Here the link Goodvibe put up just in case you missed it.

http://www.youtube.com/watch?v=xKgganSjKEQ&feature=share%C2%A0