Hello All,
I have recently come across a treatment for MS - CCVSI. It is an operation which unblocks veins to allow blood flow. It isnt available in the UK but can be done in Poland and some other countries.
Has anyone else heard anything or had this treatment???
Thank you
Dee
x
Youāre right about the DMDs. There is lots of good info on the main part of this site, as I expect you know already.
I hope yor discussion with the GP is fruitful. Trouble is, most GPs donāt know a lot about MS - that is one of the reasons MS nurses can be so useful, but not everyone has one, unfortunately. The link to MS nurses usually comes via the neurology department at the hospital that looks after you - it can be really good to have someone to bounce questions off. Those appointments with the neurologist can seem an awfully long way off when you have questions about your treatment and care, canāt they?
Alison
x
There has been a huge amount of media coverage and web coverage of CCSVI, but the basic facts are that no one has been able to replicate the original findings that led to the theory being announced (this is very dodgy, scientifically), CCSVI is found in people with different medical conditions AND in people who are perfectly healthy(!) and for every MSer who claims that they have benefited from treatment for CCSVI, there is another who says they have had no benefit or have even gotten worse.
Even the man who originally came up with the theory stresses that no one should have the treatment until clinical trials have been completed. This wonāt be for a while.
Karen x
PS For those who want the science, here are some abstracts reported at a recent conference about MS (copied from Multiple Sclerosis Research website, overseen by Prof Giovannoni, a leading MS specialist in the UK: http://multiple-sclerosis-research.blogspot.com/):
[Post abridged by Admin - please use link to read more as lengthy reposts cause serious problems for visually imparied users of screen readers]
Iāve had ccsvi treatment twice and really believe that I does help a lot with ms symptoms. I donāt think youāll find a whole lot of support for it on here - seems the ms society are not behind it yet, however, NICE are looking into this treatment ao hopefully all will change.
The best place to find out on the internet is either on facebook, or a site called this is ms.
The main problem now is that it is not availble on the NHS yet, so you have to pay. These is a clinic in Scotland doing this procedure. but with a very hefty price tag. Poland is where I want the first time to have this done - more reasonable price and good package with hotel, drivers etc.
I think results depend a lot on what stage your ms is at. People with rrms who have had it for a short time have fantastic results - I have spms now, and although it has helped at lot with my health in general, it has not improved my walking and balance. Please pm me if you want more info = all the best, Suzanne
You can read more here: http://www.mssociety.org.uk/ms-news-and-research/ms-research/new-and-potential-treatments/other-avenues-research/ccsvi
Yes, Anchaās answer is spot on - The CCSVI debate has been āchewedā over on this site for about 3yrs or more. Lots of info on the internet
-try googling CCSVI or msccsviuk - l did go and see a vascular radiologist for the doppler-test. l saw a Dr.Paul Crowe - [google him] he is based in the Bāham area. l do have blockages in my jugulars - but l have not had the āliberationā treatment. My daughters keen for me to go to Poland to have it done - as she does know someone whose wife has been twice. She has had very good results. There are lots of videos on youtube.
We need to keep an open mind about it - l am hopeful that something will come of it. lt apparently works better for newly diagnosed pwms.
Charing Cross Hospital London have been doing a trial.
Keep hopeful
F.
i had the treatment in glasgow in january this year. i had very good results although the ms is still here. the main benefit is that i am now standing much straighter (i used to lean to one side) and my balance has improved a lot. its expensive but iām really glad i went for it or iād always have wondered. if youāre interested in the glasgow clinic, just google the essential health clinic.
good luck
xx
Well, I personally know one person who had a great result from the venoplasty treatment. He now walks very well, has good balance and works full time as a self-employed joiner.
I, however, have had two treatments and still have a blockage in the right Internal Jugular vein. I intend to keep trying until I have proper blood flow. After that Iāll be in a position to judge whether thereās anything in this for me. Itās got to be worth a try, I think.
Thank you all for your feedback, it has been very helpfulā¦ i have RRMS, i was diagnosed april 2010, i have only recently accepted and began to research the condition. If i have ths treatment would i need to have it more than once?
thanks again
Dee
x
I would be very careful with this one.
MS is such a ātrickyā disease that it is impossible to know what is causing what.
It is really good that having āthe liberation procedureā is helping some people but I have read enough to know that it hasnāt helped everyone and in some cases has made matters worse.
Personally, I would wait until there has been further scientific research done to see if this really is going to help people with MS and what the likely side effects are.
Unfortunatley there are always people willing to make a lot of money out of othersā misery. Given the nature of MS it is understandable that sufferers will often jump at any possible chance that something may help but that may not be the best thing to do.
Take care
x
Hello Dee. I would be very wary about volunteering for a treatment that isnāt broadly accepted either as appropriate or effective for people with MS. As Karenās summary makes clear, there is still a lot of work to do to give treatment for CCSVI the rigorous examination it needs if it is to prove itself as a good therapy for us.
I wonder how much support you are getting from your neurologist/MS nurse i thinking about your options for conventional treatment to manage your MS? (You donāt say whether you are already taking one of the DMDs already.) These treatments have passed all the hurdles that still lie ahead for the ātreating CCSVIā route. Plus, theyāll on the NHS, so you donāt have to pay for them!
Alison
x
Hi Alison, yes i am taking beta interferon.
In April 2007 i had optical neuritus and had an MRI - i was told that i may have this again, but no mention of MS. In April last year i was described as āwalking like a drunkā i went to see my GP who referred me to A&E than i was transferred to another hospital, i wasnt told anything about MS at this point but was given steriods for 3 days in hospital, on the 2nd day i had an MRI scan and on the 3rd day i was diagnosed. Since than i began my injections in September 2010 and had my first relaspe since being diagnosed 6 weeks ago. My relapse lasted 3 weeks. I do not have any contact with an MS nurse and do not know who it is. I have an appointment with my GP next week and i am hoping he will be able to provide me with the details.
Am i correct in thinking that DMDs are to reduce the severity of relapses and the frequency??
Thank you all for your feedback it is v. helpful
Dee
xx
If you want the low down on CCSVI and its treatment and rationale you could do worse than read this book: CCSVI as the cause of Multiple Sclerosis by Marie Rhodes, available at the well known online store named after the African river. If you buy the electronic version it is actually half the price of the hard copy. This is a well researched book with extensive quotes academics from around the world and additionally each chapter has a plain English section that explains what might have been medical jargon in the main text.
There is a lot at stake here for people whose disease is progressing fast, and neurological damage is very difficult to repair. NICE has recommended (in it shortly to be published guidance document) that trials should take place as quickly as possible; but to face up to reality this is unlikely to produce results in the next 3 years. What is really needed is a collaboration between Neurologists and Intervention Radiologist/Vascular surgeons so that assessment of previous condition can be compared to follow up after treatment. We need to develop expertise in a number of centres across the country so that people do not have to travel hundreds of miles for treatment and follow up. There is no question that this treatment is safe. This treatment is carried out daily in our hospitals for other conditions, the acceptable risk to the NHS is 1%, the risk so far for the CCSVI intervention is about 100 times lower than that. Some 30,000 people world wide have been treated, only three people have died and a handful have suffered some complications. The only question in the mind of the NICE (IPAC) committee is whether the treatment was efficacious.
Treatment protocols are being developped to make this procedure as effective as possible. Physicians from around the world are meeting regularly to advance understanding and standardise treatment, but in the end the UK will have to bite the bullet if we are to get treatment on the NHS.
EHC in Scotland who are currently carrying out the procedures in the UK want this treatment available on the NHS as much as the rest of us, the surgeon doing the work is actually an NHS surgeon. The way the NHS works these days, private medical services are often commissioned to carry out the work, so they may be in the running for business even if the NHS take it on. Someone mentioned the cost of the procedure, comparing the cost here and abroad. Procedures in Eastern Europe and the Middle East are much cheaper than in this country and this could be due to the costs of running clinics (premises, staff, services and equipment). The possible advantage of the procedure in this country is the expertise of the surgeon carrying it out and his use of specialist equipment (IVUS) which actually can see inside the veins. This kind of mini camera can only be used once and as you would expect very expensive.
Dee,
l have been following your post and the replies. You ask whether you would need to have the āliberationā treatment done more then once.
So far, it has been the case that most pwms do have to go back again - But- also it has been found that newly-diagnosed cases of ms get the best results from ccsvi treatment. l have had ms for nearly 30yrs - so l am not a good ācandidateā - but if l were you - l would certainly go and have it done.
F.
I would certainly not have it done until the whole procedure and theory behind it has been researched more thoroughly.
I also notice that another poster has said that a lot of the surgeons offering it are NHS surgeons. I would be very surprised if they werenāt. Unfortunately some NHS surgeons need to keep poverty from the door by moonlighting in the private sector.
Unfortunately you have had a small skewed sample of replies which have on the whole been positive. I have read enough to be very wary of this procedure.
It would be wonderful if this treatment turns out to be helpful, once itās been put through itās paces to demonstrate that it is (a) barking up the right tree and (b) effective and safe.
Until then, it remains in a rather murky grey area. Experience has shown that such grey areas can be fertile ground for people who think it is rude not to take money off a sucker and who have few qualms about exploiting peopleās desperation by taking their money. I wouldnāt touch this or any other invasive, unproven treatment with a barge-pole until its been accepted into the mainstream.
Alison
x
Hi,
The research is slowly starting to come in on CCSVI and it is looking less and less promising. There are several trials under way but as is the nature of such things the results wonāt be in for a few years.
This may be of interest
A recently published study by Centonze and colleagues at the University Hospital Tor Vergata in Rome, Italy studied CCSVI in 84 MS patients and 56 healthy subjects using the Zamboni method of CCSVI identification. They found no statistically significant differences in CCSVI frequency between MS and control subjects. No differences were found between CCSVI-positive and CCSVI-negative patients in terms of relevant clinical variables such as disease duration, time between onset and first relapse, relapsing or progressive disease course, and risk of secondary progression course. They concluded that their results indicated that CCSVI has no role in either MS risk or MS severity. These results were published in the international journal Annals of Neurology, July 2011. www.ncbi.nlm.nih.gov/pubmed/21786298
Also this link might be of use frome the research arm of MS Australia. It contains several good links to various research sites so is well worth a browse.
http://www.msra.org.au/ccsvi-research-round
Personally I wonāt go anywhere near the so called Liberation treatment until a LOT more is known about it.
Cheers,
Belinda
I have just seen this on the MSRC website:
āOf more than a dozen studies presented here on the chronic cerebrospinal venous insufficiency (CCSVI) theory of multiple sclerosis, most failed to find any support for it.ā
If you want to read the rest, the link is: http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2479. The title is "Little support found for vascular MS theory at ECTRIMS." (ECTRIMS is the name of a big conference all about MS that was on last week.)
Please donāt rush into something so serious that is so unproven.
Karen x
This is part of a recent report from ECTRIMS.I have to say the report is quite long and the mods donāt seem to want us to post too much.
Of more than a dozen studies presented here on the chronic cerebrospinal venous insufficiency (CCSVI) theory of multiple sclerosis, most failed to find any support for it.
One study presented at the joint meeting of the European and Americas Committees for Treatment and Research in Multiple Sclerosis, found that eight of 15 children with pediatric MS had venous abnormalities when examined with magnetic resonance venography.
Another, conducted in 45 healthy controls and 133 adult MS patients, found signs of CCSVI in about half the patients ā but also in one-third of the controls.
The other studies all either failed to find CCSVI at all in their participant groups, or it was equally distributed between patients and controls.
The latter included one of the largest studies reported so far, with 160 MS patients and 160 healthy controls. Transcranial echo-color Doppler sonography indicated possible CCSVI in 16 patients, but venography found stenoses in only two patients.
The authors, from the University Hospital of Padova in Italy, declared in their poster that āCCSVI is definitely not the cause of MS.ā
They titled it āNo Need for āLiberationā in MS Patients,ā a direct slap at their countryman Paolo Zamboni, MD, of the University of Ferrara.
Zamboni had launched the CCSVI craze in 2009 by claiming to find the condition in all the MS patients he evaluated but never in healthy controls. He advocated a venoplasty-based therapy that he dubbed the āliberation procedure.ā
I went to the LDN/CCSVI conference in Dublin on 17.9.11. The procedure is available in the UK privately but currently not on the NHS.
So far as I can see it is relativley safe and is giving very good results for some in terms of symtom reversal and for others being effective at stopping the disease progress. Unfortunatly even if it does work for you then it may have to be repeated because there is a tendancy for the things to restict blood flow again over time.
Obviously all these things come down to personal decisions and since it is currently only available privately then on money as well.
It is however simple to diagnose if you are effected by this problem, since no every person with an MS diagnoses is, and treatment is in my opinion is very low risk, however that should not be confused with no risk.