Has anyone had CCSVI treatment?

[Inactive_User]

goodvibe - - -welcome to the board.

[Inactive_User]

[quote=“goodvibe”]

[quote=brog64]

@goodvibe

@Anonymous

Is it possible to hear from people who have had this procedure done ?

[/quote] Hi thankyou for this question as i’ve said above we are not allowed to talk without being jumped upon but i can tell you with my hand on my heart i have had the treatment it does work after 14 years of ms and lots of MS drugs in that time. i am cno longer afraid of MS or for my future.

Thankyou for looking beyond the arguments, lots of luck in what ever you decide as your path for treating your ms.

peace and love brother (or sister). x

Many people who have had the procedure done don’t post on its outcomes because the results have been less than favourable. I know a couple of people who wish they had never done it as they have had no improvement and it cost them a fortune into the bargain.

But when they have posted about their negative results many advocates of CCSVI have told them that it is often necessary to repeat the procedure. More money after bad…

Also as a general rule, people tend to talk up and indeed become evangelical about a positive experience in their lives but it is human nature to not trumpet about failures in ones life. (And I am not referring to CCSVI in particular here, I mean in general).

So seeking anecdotal evidence about a treatment can lead to very skewed and unreliable results. Which, I presume, is why so many posters try and redress this by posting objectively about it and giving a non-biased, scientific, evidence based view in an attempt to balance up the opinions.

Hopefully in this way posters such as who wrote the original post can make an informed decision about her options. Which surely is in everyone’s best interests?

Belinda

[/quote]Yeh Brog64 I think the question was… ‘is it possible to hear from people who HAVE had this procedure done’ not ‘can some one who knows a man who once heard a bloke say 4 years ago blah blah blah’

But thanks for once again for butting in and stamping your knowledge all over the post, you have proved perfectly the point i was making. nice one, cheers. x

Wow, now I know what you mean by “we are not allowed to talk without being jumped upon”. Charming response from one who espouses “peace and love”, however…

I didn’t see Anon requesting those that haven’t had the procedure refrain from replying… just a request that those who have do reply.

And presumably if there were more people who had had the procedure and who felt they had something to contribute, they would be posting. My not posting isn’t going to make them materialise all of a sudden.

And I still maintain that balancing anecdotal reports with evidence based medicine simply makes it easier to make an informed choice.

Peace and love to you to goodvibe,

Belinda

[Inactive_User]

[quote=“goodvibe”]

[quote=brog64]

@goodvibe

@Anonymous

Is it possible to hear from people who have had this procedure done ?

[/quote] Hi thankyou for this question as i’ve said above we are not allowed to talk without being jumped upon but i can tell you with my hand on my heart i have had the treatment it does work after 14 years of ms and lots of MS drugs in that time. i am cno longer afraid of MS or for my future.

Thankyou for looking beyond the arguments, lots of luck in what ever you decide as your path for treating your ms.

peace and love brother (or sister). x

Many people who have had the procedure done don’t post on its outcomes because the results have been less than favourable. I know a couple of people who wish they had never done it as they have had no improvement and it cost them a fortune into the bargain.

But when they have posted about their negative results many advocates of CCSVI have told them that it is often necessary to repeat the procedure. More money after bad…

Also as a general rule, people tend to talk up and indeed become evangelical about a positive experience in their lives but it is human nature to not trumpet about failures in ones life. (And I am not referring to CCSVI in particular here, I mean in general).

So seeking anecdotal evidence about a treatment can lead to very skewed and unreliable results. Which, I presume, is why so many posters try and redress this by posting objectively about it and giving a non-biased, scientific, evidence based view in an attempt to balance up the opinions.

Hopefully in this way posters such as who wrote the original post can make an informed decision about her options. Which surely is in everyone’s best interests?

Belinda

[/quote]Yeh Brog64 I think the question was… ‘is it possible to hear from people who HAVE had this procedure done’ not ‘can some one who knows a man who once heard a bloke say 4 years ago blah blah blah’

But thanks for once again for butting in and stamping your knowledge all over the post, you have proved perfectly the point i was making. nice one, cheers. x

There doesn’t seem to be much peace and love in your reply to Belinda, who I thought made some very valid and helpful comments.

I am pleased that CCSVI has brought about such improvements for you, long may it continue.

[HKFooey]

@ Goodvibe

FYI this is the MSS Forum.

Definition of a Forum =

A public meeting place for open discussion.

A medium for open discussion or voicing of ideas, such as a newspaper, a radio or television program, or a website.

Anyone is free to expess their opinion or exchange their ideas here, if that happens to be a different idea or opinion than your own then tough - get used to it.

What’s happened to all your peace & love?

[david603]

Goodvibe, Welcome to the forum, it is good to have your input.

There does seem to be a mob here that will rubbish any procedure that is against the interests of the drug industry and indeed anyone who supports those who supports such a procedure. CCSVI/ LDN/ HBO anything really.

Try to get use to it and do stay.

[Inactive_User]

For those of you who apparently do not know how to access profiles:

1. Click on the name of a user.

2. Oh. That’s it. Nothing else required. Let me try that again…

For those of you who apparently do not know how to access profiles: just click on the name of a user.

Hope this helps.

[Inactive_User]

@david603

There does seem to be a mob here that will rubbish any procedure that is against the interests of the drug industry and indeed anyone who supports those who supports such a procedure.

Are you suggesting that there are pharma shills on this board David?

Are you suggesting that anyone who challenges unreasonable claims about unproven meds and therapies are pharma shills David?

PLEASE CLARIFY YOUR STATEMENT.

[Inactive_User]

@david603

Goodvibe, Welcome to the forum, it is good to have your input.

There does seem to be a mob here that will rubbish any procedure that is against the interests of the drug industry and indeed anyone who supports those who supports such a procedure. CCSVI/ LDN/ HBO anything really.

Try to get use to it and do stay.

Mob??? You made me laugh, David! Surely not the Mafia??

Actually I am not here to “rubbish any procedure that is against the interests of the drug industry” at all. I am here to help present evidence based medicine. And as soon as CCSVI or LDN or HBO can be proven through double blinded, scientifically valid trials to be of benefit to people with MS, I will be right behind it. (Possibly first in line!)

There are many pharmaceuticals in the pipe line or that have been discarded as treatments and I don’t go around supporting them. But like wise, when (or if) they are proven to work, I will support them.

The only thing I will dispute (“rubbish” in your terminology) is incorrect, misleading or scaremongering information that is posted.

You are welcome to your opinion, David. But freedom to state your opinion is not the same thing as freedom to state it unchallenged. If you can’t cope with healthy debate and having your opinions challenged, don’t get involved. But please don’t make disparaging remarks about those who are able to take part in an intelligent debate and are able to do so without making it personal.

Cheers,

Belinda

BTW, the slow clap is getting louder as the audience grows over on your Disease Machine Debate thread… People are still waiting

[Inactive_User]

@goodvibe

Thanks david good to see others on here who are still speaking up for what they know to be true.

That is the beauty of an open forum, isn’t it, goodvibe. We can ALL speak up for what we know to be true

Belinda

[Inactive_User]

[quote=“goodvibe”]

@david603

Goodvibe, Welcome to the forum, it is good to have your input.

There does seem to be a mob here that will rubbish any procedure that is against the interests of the drug industry and indeed anyone who supports those who supports such a procedure. CCSVI/ LDN/ HBO anything really.

Try to get use to it and do stay.

[/quote] Thanks david good to see others on here who are still speaking up for what they know to be true.

For what they know to be true? Are you referring to facts or to beliefs? Or are you referring to David’s insinuation that the people who promote evidence-based medicine over anecdotes are pharma shills? Or are you suggesting that anyone who disagrees with you is telling untruths? Or are you agreeing with David’s earlier statements that injectable DMDs do not modify the course of MS?

Please clarify your statement.

[Inactive_User]

@rizzo

@Campion

And l do not want people put off posting on here because of the same old crowd of ‘experts’.Which is what is happening - l get pm/emailed by people about it - and its not fair that they should feel intimidated - we are all in the same boat - so stop ‘rocking it’.

Who is rocking that boat? The people who post wild accusations or the people who challenge them?

Incidentally, I too get frequent pm/emails. Half the time I don’t have a clue who they are from, but I always reply. Sometimes they ask for advice. Sometimes they ask for information. Sometimes they ask for something technical to be translated. Lots of people just say hi. Others ask me to intervene somewhere or reply to something that they think I can help with. The ones I get more of than any other type simply say thank you.

I wonder if you’ve seen this reply Campion? I would very much like you to clarify who you believe is “rocking the boat”.

[Inactive_User]

@goodvibe

I will say once again, and i will repeat it untill the day i die.

I have my proof right here in my own body that CCSVI is a major part of MS. I dont need some neuro or better still some researcher who thinks he knows my body and my MS better than i do. I know it is true because i’ve felt it, i’m living it.

I have been treated for CCSVI and i have benefitted from that treatment. now for most thats a good thing to hear for others it seams like a red rag to a bull. no matter i will keep telling people the facts as i know them.

peace and love. x

The thing is goodbvibe, you are mixing up your personal experience with “facts”. I am not disputing you have had a remarkeable improvement in your MS and of course I am pleased for you. But you can’t draw from that experience that the CCSVI treatment was actually the cause of it. It may have been concidental in that the timing of the procedure occurred at a stage when the MS may have gone into a slight remission. It may be a placebo effect. CCSVI may be a completely separate condition that was causing you ill health on top of the MS. It may also well be that the CCSVI procedure did work. But we don’t know…

This is why proper trials need to be conducted. There needs to be enough people studied over a long enough time to show viable results that can then be extrapolated to a wider population.

I am not against CCSVI per se. I just want to see ANY and ALL treatments for MS properly studied so that people can be sure of receiving treatments that are proven to work.

Belinda

[Inactive_User]

Wow. i’ve just been diagnosed a month and came looking for info. Are there really people on here who are lying about their MS???

Im really interested in CCSVI and can goodvibe tell me who treated him? Was it in the UK? Are there any good places in the UK? Isn’t it expensive though?

[Inactive_User]

@goodvibe

Brog and rizzo, you two just can’t leave me alone can you, honestly talk about hounding some one.

Please point out the place where I “hounded” you. All I did was ask you to clarify a statement (which you have not done).

You are mistaken about the “hounding”. I am deeply offended and would like an apology forthwith.

[Inactive_User]

@Coire Uisg

What is all the fuss about?

Well, it seems to me that you claimed that “MS drugs” don’t work and some of us got rather offended. Perhaps if you retracted that statement we would leave you alone to get on with this thread.

@Coire Uisg

I think their use of a Tesla 7 MRI scanner is probably fairly scientific, but I am not a scientist so I can’t be too sure.

Isn’t it lucky then that there are several scientists on this forum, some of whom have been replying on this thread. I, myself, used MRI in my PhD so if you would like to know more about MRI, how it works and what papers that use it mean, I will be delighted to help. The first thing to learn is that advanced tools do not in themselves enhance the science. I am happy to admit that one of my early experiments for my PhD was simply terrible - yes, it used a 3T MRI scanner and leading edge software, coding, etc, but unfortunately I hadn’t thought through the paradigm through properly. Ah, but we live and learn.

@Coire Uisg

I found this paper pretty useful too in reaching my personal decision to be scanned and treated for CCSVI - it is on the old side

Perhaps you would like to update your knowledge by reading actual experiments rather than a single hypotheses published in 1986? I posted a series of abstracts from papers presented at the 2011 ECTRIMS conference on this thread. You can find them at the date stamp 9th March, 12.17pm, on the second page I think.

[Inactive_User]

@Anonymous

Well I’ve come back to this forum after asking my question ’ can we hear from people who’ve had this treatment’ only to find the arguments still raging and it does seem to be the loudest / angryest ( if there is such a word) coming from people who’ve not had it done. I’m going with the last poster can we plese have more in depth info from the folks who’ve actually had it done, Dr’s / places/ prices outcomes etc. Thanks in anticipation and please if you haven’t had this done please don’t bombard other people.x.

I find it very interesting that, while you’ve come back to the forum, you don’t seem to have read all the replies. I have already told you that there are only a few regular users of this forum who have the procedure done. Johnbestmate and I even discussed one lovely man who used to post on here a lot who unfortunately did not get any benefit from it. I also suggested how you might find other testimonies (albeit with a warning that you will find a bias to the positive because people who do not get good results do not post). Actually, if you simply search the forum for CCSVI, you may be able to find stories from this forum.

Incidentally, why the anon? If you really expect to influence the course of this thread, I think you might find that using your real name would be of more benefit.

Perhaps you should also have a look at the terms and conditions of using the anon function? I think you may be in breach of them, but I’m sure a mod can clarify that.

[AnnieB]

Mmmmmmmmmmmm

It is always concerning when people have difficulty with others disagreeing with their opinions, I ask myself why?

As I have previously said, I find the exchange of knowledge on these boards helpful and I am very grateful to those that take the time and trouble to post.

Given the nature of MS and the current state of knowledge about it, it is not surprising that people in desperation try to find help in whatever form they can. Some of this like LDN or HBOT are relatively cheap and unlikely to do you any harm and so in my opinion are probably worth a shot. CCSVI, however, is neither of these things so caution is needed. Personally I would be guided by my medical team (MS nurse, GP and neuro) but others may well disagree.

As a lay person one thing I have noticed is that the placebo effect seems to have quite an influential role in MS. I am sure that if standing naked at the top of Everest was advocated as a treatment, there would be people claiming it had produced miraculous results for them.

[Inactive_User]

@Coire Uisg

http://www.independent.co.uk/life-style/health-and-families/health-news/ms-drug-trial-a-fiasco-ndash-and-nhs-paid-for-it-1991104.html

How is this link relevant to this discussion?

It occurs to me that you have posted this link purely to provoke outrage from people who use DMDs - a very large number on this forum. You are very new so perhaps you didn’t know that? Or perhaps I am misinterpreting this action and it was a mistake on your behalf?

Let me tell you something rather important about this article. The author completely misunderstood both the trial and the science behind it. His conclusions were fatally flawed. They are also completely and utterly refuted by science.

If you would like to get into a discussion about DMDs, I suggest you go and contribute to the thread “Reply for David603 who believes that injectable DMDs…”

[Inactive_User]

@goodvibe

OK rizzo as you obviosly run these forums along with your little gang and as your word is law around here and as we know with the MSS the admins have little regard for anyone who isn’t helping push more drugs, then i will leave you to it for now, i think it is quite clear that you and your group have a real chip on your shoulder with this subject, that is quite clear from the amount of effort you are putting in to shutting down any one in favour of CCSVI and no amount of personal testimony will ever be heard on an MSS wall unless theres a buck in it for them and who knows i’m starting to think perhaps you too?

Enough has been said here for anyone reading this wall to get the general vibe on CCSVI treatment and the people who’ve had it : if you’ve had it then generally your happy to talk about it because it has helped, if you havn’t and have already made your mind up that its not for you then at least on this wall it seams your happy to talk with great authority on some thing you know very little about.

If your still sat on the side lines concidering the treatment then please follow the advice others who have personal experiance have given, research the clinic and take your time, do your own research and ask lots of questions before hand, if possible sit down face to face with someone who has had the treatment and have a chat, but most of all remember it is YOUR choice, not rizzo’s, not Brogg’s and not mine.

I’ll leave the last word to the shouters as i kind of think thats how it has to work around here or toys and prams part company. Good luck in whatever you decide. x

Are you actually claiming that I am paid to post on these forums?

You are dangerously close to libel.

I do not run these forums.

I do not prevent anyone posting on these forums.

I do not oppose anyone doing anything that they believe might help their MS.

I do not pretend to know more about something than I actually do.

I do argue against unscientific, unfounded allegations and claims to ensure that anyone reading these boards gets balanced information and can make informed decisions.

I have never been offered or accepted any money or gifts or anything(!) to do this.

I do not care how angry you are - making allegations like the ones you have made in this post is well beyond what is acceptable.

[Inactive_User]

Welcome Sybil,

Just like you - l had a doppler scan done, nearly 2yrs ago, and l have a similar problem as you and l am waiting -hoping that the treatment becomes available on the NHS here in UK. My daughter actually does know someone who has had the ccsvi treatment - about 2yrs ago - and she has done remarkably well. So as you can imagine my daughter is keen for me to go to have it done. This lady went to Poland. l am just hoping that it becomes possible to have it done locally.

lf we did not have MS - we would be treated like anyone with a vascular problem - and very promptly.

So welcome to the forum Sybil -

F.