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CCSVI - Carers UK Forum

CCSVI

Share information, support and advice on all aspects of caring.
Has anybody had the "liberation procedure" to help with ms symptoms? Is it available in the UK? Is it covered by health care?
Many thanks, in advance.
Gary
The Liberation Procedure isn't yet available in UK.There is a private clinic in Glasgow which is planning to offer Colour Doppler Ultrasound scans from July and they are hoping to link with another private facility in Glasgow that will offer further investigation and treatment later in the year perhaps from August / September time. Current appointments are booked up but they have stareted a waiting list. Look up Essentials Health Clinic for more details. For the Ireland clinic look up ccsvi scans Ireland on Google. I dont think treatment is available there yet but dont know for sure. The likely price if treatment is offered in Glasgow privately will be about £4,000 to £5.000 but no details out yet. It is not available on the NHS (National Health Service) at this time due to lack of detailed research to date.
Bob
The Liberation Procedure isn't yet available in UK.....is not available on the NHS (National Health Service) at this time due to lack of detailed research to date.
Bob
In other words, it most probably doesnt work, but if you have more money than sense, feel free... and by the way, always be a bit suspicious of folk from the US of A who join a list like this to promote some alternative therapy you have never heard of.
I respect your being wary, Excalibir. Believe me, I am in no position to receive any commission for my inquiry. It's just that my wife is just about bedridden due to ms and she is convinced that the CCSVI approach to ms is so novel that it may be her only hope. She has had the disease for over 35 years. Needless to say, there's not much we can do now without a full time aide and a hoyer lift by my side.

All I can say is trust me, I mean no harm to anybody. I'm thrilled to be able to share with carers in a foreign country. In the US I am a an active member of Wellspouse.

I hope you understand.
Hi

I don't think we should judge people before we get to know them i don't think there is the need to make remarks like Vomit if this person is what they say they are and just asking questions from another country and asking a polite question about do we have this particular treatment over here.

Please respect new member's give them a chance before you scare them away.

John
John, we have had a long history of people joining this list not to play a part in our community of British carers, but simply to promote a commercial product or highly controversial viewpoint - including at one time, a veritable swarm of attempts to promote hard-core pornography. Some of these are very crude attempts at link-spamming, others are more subtle. Either way, we need to identify and crack down on these types of infiltration because they damage our ability to be a credible, neutral place for carers to come and share information without being bombarded by commercial spam or extreme viewpoints.
I dont know if you ever see those adverts in Facebook etc: "earn $300 a day just by promoting websites" ? This is called search Engine optimisation, and its a real menace.
Thanks, John, for your support. I have learned from many friends, especially in Canada, that they are traveling to Poland, Italy and Belgium to have the operation to transplant leg veins into the place of neck veins as a means to "cure" ms. So far the results are sketchy, yet the MS Societies of both Canada, US and Scotland have endorsed the procedure (albeit it is quite
expensive).

My wife has been through the mill in terms of ms treatments for symptoms. She has never received a treatment directed at the cause of this insidious disease. The "Liberation Procedure" in which the neck veins are unblocked to allow venous flow of blood from the brain is unique. What is most puzzling is that virtually every patient diagnosed with ms who has had the doppler ultrasound down on their neck veins have revealed blockage. The more blockage, the more profound the ms complications.

The UK has the highest incidence of ms in the world, hence my inquiry as to the procedure catching on there. It is highly skeptical here in the US. The drug companies and insurance companies want to maintain the status quo since they are makiing zillions on the current treatments.
Excalibur, it's good to have a watchdog, such as yourself, on this site. I agree that we in the US regularly get bombarded with spam, porno and the like. It bothers me most since I am a retired high school principal. I retired in 2003 at a time when kids were becoming vicious toward each other on the internet and the various websites that promote such antics (Facebook, Myspace etc).
Believe me when I say I have no alterior motives. This unique approach to solving ms is catching on all around us and yet the US is dragging its feet. Therefore I am exploring the frequency of the treatment in other countries. Unfortunately I have to seek out those whose language is English, although I have heard from the Netherlands, Belgium, and Italy where the "Liberation Procedure" is being done and ms patients have improved substantially.

I visited the website for the Poverty Carers Alliance. It is similar to our Wellspouse.org.
Yes, we carers live a lonely thankless existence.

Thanks for showing you care, Excalibur.
Excalibur, it's good to have a watchdog, such as yourself, on this site. I am a retired high school principal. Believe me when I say I have no alterior motives. ...Therefore I am exploring the frequency of the treatment in other countries.
I visited the website for the Poverty Carers Alliance. It is similar to our Wellspouse.org.
Yes, we carers live a lonely thankless existence.

Thanks for showing you care, Excalibur.
Thanks, but my life is neither lonely nor thankless, and as a retired public health professional I take great interest in alternative therapies. Indeed during the last four weeks I have been on the receiving end of acupuncture, (free, by the way, from my GP, isn't the British NHS wonderful) therapeutic massage, and even Reiki, so I can hardly be accused of being ultra orthodox. And I have paid privately in the past for e.g. a front tooth dental implant, so I am not averse to private medicine either. However ... and this is the big but ... this is a carers list, not a forum for quack or new treatments.
MS is believed to be an autoimmune disease in which the body's immune system wrongly attacks it's own organs, etc., in the case of MS, whatever the cause, the myelin sheath which surrounds the nerves is damaged, demyelination and scarring, interfering with the ability of nerve cells to communicate with each other.

Whilst I can understand why MS sufferers and their carers will look at any possible cure I have great difficulty in understanding the role of transplanting blood vessels from the legs to the neck, damage to the myelin sheath is unlikely to be reversed, in fact I would suggest that it is impossible to reverse, as a consequence of such a procedure, I strongly suspect that any perceived improvement is the consequence of a placebo effect rather than the result of a cure.

I personally would want to see positive proof of benefit from blind clinical trials before being willing to spend money on a procedure which carries risks and for which there is no peer reviewed evidence of benefit, I think that this is a case of caveat emptor I am afraid.