Forum

ccsvi

I recently joined and left a group called ms friends on Facebook. The reason I didn’t stay with the group was because it was like a CCSVI promotion company. The people that posted on there the most insisted that this treatment would all but cure their MS. When I questioned the veracity of the statements I got taken to task and accused of being stupid because i followed the Neuros diagnosis and treatment, and, was told these treatments activley harmed patients with the Neuros ful knowledge that they did! After a somewhat heated debate i left somew and, a6hat angry. I know anecdotal evidence says some people found the treatment beneficial, but to the degree of curing the MS??? I can’t accept it and, at a cort of around 3500 euros a treatment it starts to smack along the lines of the monkey stem cell treatment offered off shore some time ago. Sorry if this goes on a bit and that I’m ranting on but, it seemed preposterouse.

Any thoughts?

Hi, a while back there were a lot of posts/replies on ccsvi.

Like most things, some folk believe it can cure MS and others are more dubious…I`m in the latter group…but each to his or her own, eh?

luv Pollx

Hi Polix,

I fully agree each to their own, I was just concerned that people in that group might be put off taking their meds as was advocated on there

Regards Monkey

Hi am sorry but whilst I am fully in support of research this is basically bollocks. Being a health care professional I try to keep updated on MS treatment & “cures” we can control our symptoms & learn to live with em but any “miracle” hasnt happened yet. I dont poo poo anyone tryin but I do object to “false hope” sos to rain on THEIR PARADE but you were quite right to ditch em. Its the Devils Advocate Im afraid, friends like that we dont need, hence this message board. Tracey x

The filtered word is BOLLOCKS!!!

I believe CCSVI might be part of the solution, but no responsible person would ever claim it to be a cure. There are a couple of large scale trials happening in America and one answer is to wait for the results.

Hi Tracey, it’s a group with over 2,500 members, a lot american, but what really annoyed me was the remark that Neuros actively hurt patients with their treatments… oh and the woman who’s name escapes me had written a book on CCSVI… no vested interest there then

Hi Whamme, that is what i first suggested

God bless the americans! Any treatment that inflicts more distress on the patients it is supposed to be helping in my opinion is basically subsidised torture. What they need is health care professionals with ms & try it on them!!! Lets see how many of them advocate it then!!! All for progress, obviously, but let em test it on themselves, wonder how much uptake they would have!!! Tracey

There is nowt on offer for me from the NHS apart from addictive ‘pain relief’ (I get better relief from the local horticultorist) so as soon as we’ve got £6,000 we’re off to Poland for the Liberation with stenting. Me not her.

Wb

Hi wobly,

I’m sorry you feel that way and i truely hope stenting works for you, maybe when you’ve had it you would be so king as to let us know the outcome. Best wishes and i truly wish you the very best

not king, kind lol

Thanks Monkey for your kind words, and as soon as we’ve overcome the small matter of the six grand you’ll know all about it. If our numbers come up we’ll be paying more in Frankfurt and I’ll be drinking more beer.

Wb

Wb

http://www.ncbi.nlm.nih.gov/pubmed/22569567

is interesting reading

i had the ccsvi procedure done 2 years ago. i saw incredible results but they didnt last.

the best improvement was in my posture, i had been leaning to one side and as soon as i sat up after the procedure i knew that my shoulders were level. i walked through edinburgh just like my old (pre ms) self! my husband couldn’t keep up.

i was thrilled and could even stand on one leg!!

slowly bit by bit i have gone downhill.

however i dont regret trying it because i would always have wondered.

carole x

Hi Monkey,

Interesting question you posted and interesting timing too. On the 10 May the FDA issued a warning regarding CCSVI which you can find here

Belinda

I AM American – I haven’t actually lived in America for over 10 years, so I’m purposely choosing not to take offense to any of the comments made here. Probably not great to generalize, though.

Anyway, regarding CCSVI. I’ve done a lot of ‘research’ on this topic, mostly out of curiosity and I also know a woman who has MS and is currently entertaining the thought of going to have the procedure done overseas (we live in New Zealand). Whilst I don’t think it can be called a ‘cure’, I’ve seen many people who have had a great relief of symptoms, even if just for a short time. I think it can be beneficial for those who have tried other things with no success… A cure? No. But definitely not to be discounted as a treatment for certain people.

to me it just seems like a roll of the dice for rich people

Although there are a number of people on MS Friends who have very strong views and sometimes are not thinking straight, and we all know what MS can do to our emotions and thinking processes, and I would personally distance myself from these extreme views, I am writing in this forum that I do not frequent very often to state a few facts.

The woman who wrote the book, “MS as the cause of Multiple Sclerosis - The Science Behind the Controversial Theory” is Marie Rhodes, and if you take the trouble to read the book you will see that it is very even handed and explains the science behind both the vascular theory (which has 150 years of history behind it and recently convincing evidence from a few researchers such as Prineas and Barnett: http://www.ncbi.nlm.nih.gov/pubmed/15048884 ) and the neurological theory based on the EAE model. And far from making any money from it she is still considerably out of pocket. It would be good if more people would read the book because there is no hype in it and it sensibly explains the situation as it stands.

Secondly, any sensible person or non commercial website will let you know that CCSVI treatment cannot be claimed to be a cure for MS. If treated early enough and consistently enough people suffering from CCSVI may avoid the more debilitating deterioration that comes from MS. About a third of people treated do very well, a third get moderate results and a third do not see any improvement at all. Until we can understand what this means through research and good records of people treated it is difficult to say that this can be a “cure”. However CCSVI treatment is at least as effective as the drugs prescribed for MS which also are not effective for all people, and considerably less dangerous than a couple of the drugs currently prescribed such as Tysabri and Gilenya. Only three people have died out of 30,000/35,000 treated for CCSVI whereas 52 have died of Tysabri and over 200 been affected by PML (out of 95,000 treated) and 15 due to Gilenya (maybe more due to side effects such as depression leading to suicide), I can’t find figures for how many people are taking it so can’t tell how dangerous it is. What is certainly unfair and what makes a lot of people with MS who have researched CCSVI angry is the way in which neurologists (and now the FDA) who prescribe/condone/authorise these drugs talk about CCSVI treatment as being very dangerous. Angioplasty for CCSVI is even less dangerous for people with MS than it is for the patients who undergo this procedure for other conditions. The NHS deems 1% of death as an acceptable risk for angioplasty for heart/vascular patients, the rate of death in MS patients treated is one in a 1000.

There is an economic/political element to the treatment of Multiple Sclerosis… There is a lot of money at stake both for the pharmaceutical companies and for the government/s, probably also in an indirect way for the MS Society. The pharmaceutical industry is the third largest contributor to the national purse inthe UK and it is understandable that the government is unwilling to rock the boat. The pharmaceutical companies do not want MS (or cancer for that matter) “cured” or treated with non medication means, because there is money in the “market”, as they recently called the patients at the MS Life event in Manchester (May 2011). Researching this aspect of the debate recently, I came across the abstracts of a conference in Toronto on the power of business, it appears from this that whereas we are lead to believe that the development of drugs is what makes these drugs so expensive (£15 to 20 thousands a year per person) is the development and trials, whereas it appears that marketing is the largest expense incurred. Which means that the NHS and ultimately the tax payers are paying for the marketing of drugs that often are not terribly effective, can have dangerous side effects and additionally are quite expensive.

  • “Producing the right medical discourse through massive promotional campaigns has become central in developing “blockbuster drugs”, even when these drugs are in fact less efficacious than previous ones. After measuring profits and innovation in the pharmaceutical sector, the presentation will show that promotion expenditure dwarfs research and development.”

    http://bnarchives.yorku.ca/320/03/20111020_forumoncasp_cmp_conference_programme_web.htm

There is much that still needs to be learnt about CCSVI and the venous aspect of the circulation in the brain, it could be that there is also an arterial aspect too, as it appears that people with MS have slow circulation in their brain (could be the result of not enough blood reaching the brain or blood being slow at leaving it: http://radiology.rsna.org/content/262/3/947.abstract ). This means not enough oxygen with all that means for brain function. But as there is no actual proof that MS is an auto-immune disease, what the CCSVI theory is doing is opening up research into this dreadful disease and hopefully putting the auto-immune theory in its place as a possible amongst quite a few other possibilities.

@ Dovechick,

I’m not disputing that CCSVI might work for some, but what I am saying is that being told that I’m wrong for following the Neuros advice and treatment, which also means that I don’t want to “get rid” of my MS because it’s my identity and people like me would be lost without it, I find particularly offensive. Plus being told that Neuros activley treat patients with harmful drugs, I not only find repellent, but dispair that people can expound this conspiracy theory.

As for the drug companies mak.

ing massive profits from afore mentioned treatments, maybe so, but CCSVI treatment starts at £2500 plus to over £6000 and more I see little difference between them. I must add in regard to pharma companies extracting the most money for the least treatment, my brother who has PPMS was on Sativex for 10 years with GW Pharmceuticals paying towards the cost is hardly promoting “the right medical discourse” because when the funding was withdrawn so was the Sativex by his NHS authority, not a big profit there. As i said i do not dispute that CCSVI can help, but so do many drugs prescribed. Each to their own, but that site was offensive, unhelpful, and disregarded any discourse that was not in line with theirs.

P.S The people who disparaged the NHS were mostly people who had no access to it

Regards Monkey1666