有關CCSVI(靜脈血管窄化及手術的資訊)可在相關連結以及相關MS blog內

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2010年4月15日 星期四

To Poland with hope 懷著希望到波蘭

To Poland with hope How about Taiwan?
懷著希望到波蘭 那,台灣呢?

MS SUFFERERS aren't waiting for proof controversial Zamboni treatment is effective

許多正在受苦的多發性硬化症患者 不能夠再等到桑伯尼博士的推論 的證明了. 大家紛紛向波蘭求助

Francine Deshaies is travelling to Poland next month for a controversial operation that she hopes will halt the progression of her multiple sclerosis, and she's not alone.

Francine Deshaies , 年屆50歲卻依然和這個脫髓鞘的病一起生活著, 正準備下個月啟程去波蘭動手術阻止病情的繼續惡化,更重要得是:她不是一個人! 他說: 我還有什麼可以失去的?

"What do I have to lose? It's my chance," says Deshaies, 50, who is living with the chronic neurodegenerative inflammatory disease.

Ever since Italian vascular surgeon Paolo Zamboni of the University of Ferrara made headlines worldwide last year with his provocative theory linking MS to blocked neck veins, MS patients like Deshaies have been scrambling to get the experimental treatment, called the Liberation treatment, which they say is the closest thing to a cure.

自從去年桑伯尼的手術成功後, 許多正在受苦的多發性硬化症患者都爭先搶著要成為實驗手術對象, 病友們都認為,這是最接近復原治癒的地方了!!

After a simple operation to unblock veins restricting blood flow from the brain in 65 patients, Zamboni reported last year 73 per cent had no MS symptoms years later.

自從桑伯尼對65未MS患者手術後, 有73%的受術者兩年沒有MS的症狀了!!

The potential treatment has inspired hope and controversy.


A fierce battle between patients and scientists continues on the Internet and in the media.

While scientists urge caution until Zamboni's theory has been proved and the link to MS confirmed, patients aren't waiting for proof.

正當科學家急著警告桑伯尼的理論尚未全面獲得和MS有直接關聯的同時, 病患已經不能等了... 也不想再等了!!

MS attacks the brain, the spinal cord and optic nerve and causes such disabilities as fatigue, numbness, paralysis and blindness.

Following the surgery, some patients reported feeling much better; either their symptoms had disappeared or the disease's progression had stopped.

部份手術後的病患表示:感覺好多了, 之前的症狀都不見了, 而且惡化的程度也停止下來!!

None of the medications Deshaies has taken since her ailment was diagnosed 16 years ago has managed to stop MS from gradually ruining her life. Four years ago, Deshaies was still walking, now she is in a wheelchair.

Patients worry it will take too long for Canadian studies to prove that the treatment works - time they don't all have. At least 10 people on Deshaies's Facebook page - part of the vast MS online landscape - have contacted the clinic in Poland to book the procedure.

病患擔憂加拿大針對此一理論的研究將會拖的太久, 而MS er已經沒有時間了, 所以至少有10個人和Francine Deshaies用facebook聯繫, 並和波蘭診所定下手術時間

Zamboni calls his cardiovascular connection theory chronic cerebrospinal venous insufficiency (CCSVI).

On a mission to help his wife, who has MS, Zamboni discovered blocked or malformed veins in 100 per cent of patients with MS. The malformation, he theorized, interfered with blood flow from the brain, leading to an iron buildup that can injure brain tissue and neurons. Zamboni's team then used balloon angioplasty - similar to unclogging heart arteries - in a small pilot study and on his wife, who has reportedly been free of MS symptom for three years.

The medical profession has yet to accept Zamboni's theory. For many MS specialists, the condition remains an autoimmune disease in which the immune system attacks the myelin coating of nerve cells.

Scientists are now putting Zamboni's theory under a microscope.

But Zamboni told a news conference and webcast at the American Academy of Neurology's annual meeting in Toronto yesterday that patients demanding access to his treatment should wait until it is thoroughly tested. Doctors who are performing the procedure are acting irresponsibly, he said.

His collaborator, neurologist Robert Zivadinov of the neuroimaging analysis centre at the University of Buffalo, echoed that sentiment.

桑伯尼的合作夥伴Robert Zivadinov 也呼應了這項結果

Zivadinov's team scanned the veins of 500 people. He found 56 per cent of participants with MS had blocked veins, compared with 22 per cent in the control group of healthy subjects.

Robert Zivadinov在之前水牛城500MS er檢驗中發現超過一半的患者都有靜脈窄化的現象.

There's no place for hype, he said, but scientists have to be aware of patients' "urgency" for treatment.

"Do we have the right to tell the patient: 'Don't go and get the treatment'? We need a task force to debate this. We don't want to look back five years later and say we did something wrong."

我們該告訴病患"不要去動手術嗎" "我們不希望5年之後回過頭來說 我們做錯了"

Zamboni acknowledged his sample size was small, that the study lacked a control group and was not "blind," meaning researchers knew which subjects had the disease and which did not.

"Results could have been a placebo effect," said Marc Girard, head of Quebec Association of Neurologists, adding nearly 50 per cent of Zamboni's patients had developed new blockages in their veins.

One of the big unknowns is whether CCSVI causes MS or vice versa, he said.

Based on current research, Girard's association warns against travel abroad for the experimental treatment until further tests provide the results.

A Stanford University trial was stopped after one MS patient died when a stent dislodged and flowed to his heart. The accident failed to throw a chill on the vein procedure, mostly done with a balloon rather than a stent.


Desperate patients don't understand why they can't have access to the treatment here when it is available in private clinics in Poland,

India, Bulgaria, Serbia and Jordan. The minimum cost is $10,000, not including travel costs

"The code of ethics in Canada doesn't permit doctors to practise what isn't proven," said Louis Adam of MS Society of Canada, where up to 80 per cent of calls are about Zamboni's procedure.

Feeling intense pressure from patients, the organization will be announcing research grants in June into the role of CCSVI and surgical treatments.

Meanwhile, frustrated patients are pleading with their neurologists for referrals to get their veins scanned, but many can't get appointments to discuss the issue.

"I want information about the surgery, where it is offered and how to register," said engineer Lynda Rondeau, who will going for a scan at a private clinic in Westmount Square and has booked surgery in Poland. "I have 100 questions and no one to ask."

Deshaies plans to travel with her journalist daughter, who will be documenting the process.

"I'm not going just for myself, but to prove that it works," she said. "I'm pushing to have it done here.

"That's very important for me."

Read more: http://www.montrealgazette.com/health/Poland+with+hope/2907846/story.html#ixzz0lB6cJjlP

波蘭行! 台灣行不行?

3 則留言:

  1. 没有行不行的问题,只有愿不愿做的问题。台湾任何大医院都应该能做。

  2. 科威特这个小国家已经在MS治疗上走在前面,正在对全国6000名MS病人做手术。所以,问题的关键在于敢不敢创新。
    Kuwait:Leading the Way for CCSVI
    Hearts of millions of MS sufferers sang yesterday when it was announced that the Kuwait Ministry of Health decided they would treat all 6,000 of their people suffering from MS with the Liberation Treatment.

    Dr. Tariq Sinan, an Interventional Radiologist, was instrumental in urging the Health Minister to make that decision.

    "We have performed the procedure on 12 patients and they all showed improvment. Two can now walk without crutches and are able to drive again. The rest share the same symptoms improvment as your friends (Ginger, Wendy Sturek and May Fietsma)," Sinan says.

    As for the procedures, the Kuwaitis will be starting right away.

    "We will start next week and we will be treating 10 patients a week," Sinan says.