Hi, I was just curious to see if anyone has had CCSVI treatment and more importantly had any benefit from it? I am subscribed to the Essential Health Clinic newsletter and they sent an email today saying prices are going up to £8,490. This seems like an awful lot of money for an unproven treatment…
I had the treatment back in 2007 and saw no improvement at all ,I know other people who have had it done who may have seen some improvement for a few monh then the symtoms came back …
I have RRMS and had the ‘liberation treatment’ in Poland 2 years ago.
Prior to the treatment I would suffer from a relapse every 3-4 months, soon worse than others but all sufficient enough to either keep me housebound or put me into hospital.
After my procedure I had 23 months completely free of any major signs of the MonSter, my first relapse was 2 days before Christmas and again I ended up in hospital, the recovery time was equal to my relaspes before the treatment.
I am still a believer that many things reacting together cause a relapse, our veins/blood flow being one of them and therefore I believe that the treatment did help in one way.
I’ve not had it myself but I know a guy who did. He saw an instant improvement - he went from walking with 2 crutches to only needing 1 walking stick. He also said his feet temperature got better and the fatigue improved as well.
you say you had the treament in 2007. Where did you have it done I was unaware they were doing it that early ?
Thank you to everyone for you replies. Such a range of responses from no improvement to vast improvement and variations inbetween (like everything is with MS I suppose!) The MS side of me is thinking there has to be something in it if people are reporting such great benefits. The researcher in me is wondering why arent they doing a large randomised controlled trial to test the efficacy of the procedure first before selling it as a treatment.
There are probably others, but this might be worth a look.
Wow Coire, I can see for some reason my lack of conviction regarding CCSVI is annoying you which wasn’t my intention.
That “rubbish” comes from the fact that the “liberation” treatment is, er, UNPROVEN!
That “Zamboni stuff” that has been impossible to replicate. The procedure that Professor Zamboni himself says that no one should have done until it has been properly trialled. That referral that will get you absolutely nowhere because it is not approved.
But now we come to the thing that has made me really furious. HOW DARE YOU?! I am grossly insulted at this outrageous scaremongering (and have reported it as such):
You join this forum apparently purely to sell “liberation” and derogate “MS drugs”. Well, you’ve come to the wrong place. There are a lot of people on this forum who are on DMDs. Who have used steroids. Who take symptomatic meds. Where is your evidence that MS drugs don’t help people? How dare you tell us all that we are ruining our immune system? Where is your evidence?
Where is the scientific evidence that “liberation” actually works? Where is the evidence that the NHS should take money from other budgets to offer “liberation”? Where is the evidence showing that CCSVI is specific to MS? Where is the evidence that there are no long-term costs associated with “liberation”? Where is the evidence???
You say we are men and not mice? Anyone who has “liberation” before it has been properly trialled is the perfect metaphor for a lab mouse!
You want to have a scientific argument?
BRING IT ON.
Explain how the cardiovascular system interacts with the immune system in demyelination. Explain how “good blood flow” can regulate the immune system. Explain how axon degeneration can result from CCSVI. Provide convincing evidence that CCSVI causes MS. Provide convincing evidence that the immune system is not involved in MS.
Just common sense? Oh well then. All those studies must have been wrong! All those scientists and specialists must be wrong! All those people who have used DMDs to great effect must be wrong!
I agree. It’s irritating, boring and illogical, but I guess some people will always choose to disbelieve the evidence when they want to. After all, we all know that:
The Earth is the centre of the universe.
The Earth is flat.
Man was created in the image of God.
The Earth is 6000 years old.
The soul resides in the pineal gland.
Health can be explained by an imbalance of the four humours.
What, science disproved these? Don’t be daft! Science can’t prove or disprove anything! Anecdotal evidence is where it’s at! It’s the new gold standard! We don’t need to study for many years to be able to understand and undertake science. We don’t need to ask experts. All we have to do is pick an unreplicable study and “believe”. And then we can flood the social media with an evangelical storm so that people who disagree are too frightened of the backlash to report their negative results and people who don’t get good results (subconsciously) persuade themselves they actually haven’t just wasted thousands of pounds. If we’re really successful, we could divert millions of research dollars from urgent work that might actually lead to a cure for MS, then we can insist that everyone else is wrong and then add that DMDs are the work of the devil (or words to that effect).
You want to believe in “liberation”? Fine. But do not tell me that “MS drugs” don’t work: they are scientifically and clinically proven. Those “same old approaches” have kept me and many of my friends from serious disability. Those “same old approaches” WORK.
A remarkable statement! I know of MANY people who have seen a reduction in their relapses after commencing on the standard DMDs, many people who have had clinical evidence of a reduction in the number of lesions on MRI with Tysabri treatment and an improvement in their symptoms. I myself have gone from monthly back to back severe and crippling relpases to one mild relpase in the last 12 months after starting on one of the oral treatments still under trial.
Let’s not forget the fact that ALL of these drugs have undergone intensive clinical trials where the clinical efficacy HAS to be proven before they can be licenced.
The rest of this post is not directed at you alone Coire Uisg but at all those defenders of CCSVI. My neurologist is involved in the international research into CCSVI and when I asked her about it a few years ago she advised me to wait until more data was in. A sensible and considered reply. Now that she has been able to collate data from around the world and early results are coming in she is strongly advising against CCSVI as it has not been shown to effectively do anything for MS. Certainly some people do report improvement but this tends to be in areas of fatigue and cognition which are far more likely to be effected by the placebo effect.
People’s arguments that because it is a proven and safe technique for other conditions does NOT mean it is equally proven or safe in MS. For a start, stenting in cardiac conditions is done in arteries, which are structurally very different to veins. Because of the valve mechanism in veins the stents far more likely to move and cause obstruction. Several people have died or needed emergency surgery when the stent has moved to the heart following the CCSVI procedure.
To say that it cannot be an autoimmune disease because it follows the venous system within the brain is an interesting jumble of scientific mumbo jumbo. Neurologists have known for decades that lesions most commonly affect the periventricular areas of the brain. Oh Doh, peri-VENTRICULAR??? Also many people have MRIs done as part of the diagnostic work up which do image the venous structure to rule out other causes for symptoms and there are no abnormalities seen which are related to MS.
Autoimmune diseases often affect areas of venous activity. I have another autoimmune disease called IgA nephropathy, which causes inflammation of the filtering system in the kidneys. This is a highly vascular area and the disease causes scar tissue to grow and destroy the filtration system. So for people to say that because CCSVI shows blocked veins therefore it cannot be autoimmune is just arrant nonsense.
Further to the argument that so many people show venous blockage on Doppler scanning this is again a bit of a furphy. Yes, get scanned under the Zamboni technique ad you are almost guaranteed to show blockages. I certainly did. Massively so and it scared me Poo-less (hopefully that gets around the word filter!) which is why I rushed off to my neuro asking her about CCSVI.
Something many of you probably aren’t aware of is that when ALL people (including non-MSers) are scanned under the Zamboni protocols most of them present with venous blockage. This is because Zamboni’s protocols require the technician to take a still photo at the moment of exhalation when the patient is sitting up and leaning slightly forward (or something like that). In this position it is totally normal for the veins to momentarily collapse in against themselves!!! There is NOTHING pathological about this. When people with “blockages” are scanned under different protocols no blockage is apparent.
Be very careful, people, to thoroughly read the scientific papers that do NOT support CCSVI as well as papers that do. Otherwise you will not be able to make a truly informed decision.
You are right to advise caution when considering any treatment but lets not forget all the friging of ‘scientific’ data to suit vested interests in drug trials. Conducting 12 trials, 10 show something does not work 2 show it does so they go for a licence based on the 2 that show it does, then there are the large ‘speakers’ fees for doctors that speak on behalf of drug companies at medical conferences. in excess of £5,000 per hour according to the 2005 Health Committee report ‘The Influence of the Pharmaceutical Industry’.
Nor lets forget that very few people in the UK are offered the licensed drugs for MS, maybe 15% of those with a diagnosis of MS.
The trouble with the Internet is that anyone can post what they like.
What they write may be true or it may be delusional.
Even, god forbid, the CCSVI clinics are experiencing a drop in custom due to emerging evidence that there is nothing in it and are assuming identities to post on here and drum up some custom.
It is interesting how some people have suddenly materialsied from nowhere to respond to this post.
Unfortunately there are always people willing to make money out of other peoples’ misery, stem cell clinics would be an example of this.
Peaced and love and recovery to all
If you really do not understand the words “unproven treatment”, then it is easy to see the effect that CCSVI has had on your cognition. Put simply, they mean that there is no proof that the treatment works.
So, from your logic, if a Neurologist knows nothing about a neurological condition, how do you know that you ever had MS? And, why have you only just joined this forum, when you have had the unproven CCSVI treatment well over a year ago?
Sorry, you are wrong here. A lot of drugs have been shown to help a whole lot of people who genuinely have MS. Perhaps, if you has been reading the posts on this forum for more than a day, you might have found that out.
So, just why did you do it? And, just as importantly, why did you sign up here? Was it to shill for CCSVI by any chance?
Just a gentle reminder about replying to Karen’s and Geoff’s comments at http://www.mssociety.org.uk/node/632488
Given your comments above, it does seem particularly appropriate that you should answer these questions.
Perhaps we should look at this the other way in that perhaps the CCSVI clinics and treatments like LDN are denting the sale of often not very effective drugs. Maybe that is why there is such a call for more and more trials of things that clearly benefit many and can be legally offered with no more trials at all.
We do need to remember that most treatment routinely offered for MS are not licensed for MS and often given in combinations not tested on anyone for anything.
For those who do not like the Health Committee report here is a BBC article.
So pleased you have brought up the CCSVI subject - and what a lot of replies from people who have had it done.
Most of the replies of from pwms are of positive results. lts made me think again about having it done. l did have the doppler scan done 2yrs ago. And l have restricted flow in my right jugular - looking forward and to the right it is blocked off-so only looking to the left does the blood flow unrestricted. l have been waiting and hoping that the ccsvi treatment will be available on nhs. My daughter knows someone who had it done in Poland - 3yrs ago - she has had very good results. And has returned for a check up. So l have friends volunteering to accompany me to have the liberation treatment. To get my scan done - l just googled vascular radiologist and my postcode. My GP wrote a letter of referral and l made the appointment. lt was with Dr Paul Crowe - in Solihull/B/Ham - it cost me £126. This is something you could do - as a start.
The doctor did also find out l had an enlarged thyroid and a goitre!! - Was not expecting that.
l know that there are many people who have had ccsvi treatment - but we have not heard from them - until now - so well done for bringing the subject to the fore.
I’ve been a forum member for over 5 years now & the one thing which is guaranteed to start an argument is when someone throws in a stupid comment like “MS drugs have never helped anyone”. Funnily enough, these types of crass & unfounded statements always emanate from those who choose to embark on untrialled & unproven treatments like either LDN or CCSVI. A persons choice of treatment is exactly that…their choice. Taking a licensed & proven drug is not a moral decision, it is one based upon logic. If you choose to embark upon CCSVI based upon whatever info is currently available by all means go for it, I wish you the very best of luck. But don’t come on this forum denigrating anyone else’s informed choice to take a drug proven to reduce relapses or give some kind of symptomatic relief. All that does is pi$$ me & many others off & make you look like a fool. Incidentally, there have been lots of unproven claims about these boards being infiltrated by big pharma shills over the years. I’m smelling a big CCSVI shill here.
I wonder if you ever read what you write?!
CCSVI and LDN are denting the sale of drugs? But ACCORDING TO YOU, people need these because they can’t GET drugs.
Those drugs are often not very effective? You know from personal experience that I have a large stock of research papers demonstrating the exact opposite of that. Would you like me to post all that peer-reviewed evidence again?
Most treatment routinely offered for MS isn’t licensed for MS or tested? Hmm. I seem to remember you making these same points before (ad nauseum). Last time you said them, you were deluged with questions and challenges and evidence against. You promised to reply. In fact, you printed off my questions and points and said that you would reply on the Friday. Which Friday might that be I wonder? There have been rather a lot.
60-0 and still waiting for you to shoot David.