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. 科威特衛生當局決定為他們國內所有近6000名MS病患做靜脈擴張術了!! 果然有魄力!! 或許這也是降低社會成本負擔的方式之一吧~!
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. 科威特衛生局表示: 我們已經執行了12個病患手術，全都有進步！其中兩位可以不用拐杖走路還可開車了！
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. 接下來，我們每週將對10位MS病患動手術
In the town of Dornbirn, Austria, retired physician Dr. Franz Schelling is watching the explosion of interest in Chronic Cerebrospinal Venous Insufficiency (CCSVI) and the Liberation Treatment, convinced this long-dismissed idea will finally get its day in scientific court.
Dr. Schelling is a family physician who also trained in radiology and neurology. As a young doctor, he treated patients with MS and was not convinced it was just a disease of the immune system. He reviewed research and noticed that scientists had reported signs of brain damage that appeared linked to abnormal blood flow.
"The more I collected, the more I was convinced it had to be a venous flow inversion," he said.
His work began in 1973. Even after studying models of human veins from autopsies, he couldn't figure out why blood might be flowing backwards into the brains of those with MS. He wanted help to investigate the theory further.
But no one would listen. MS specialists rejected his calls for more study, telling him that MS was an immune disorder and had nothing to do with the veins.
"It really cracked me down because I had… patients who died of MS. I went back to surgery after I realized there was no interest in clearing up this issue," he says.
He says attempts to publish a book on his work were rejected some 200 times.
That is until 2002, when Dr. Schelling's son decided to collect his father's scientific work and publish it on the Internet, giving his theory a new worldwide audience. One of those who came to his website was Dr. Paolo Zamboni, a vascular surgeon in Ferrara, Italy, named who had also been analyzing the link between MS and blood flow. Schelling noticed Zamboni had visited the site, and emailed him.
The Internet connected Zamboni's own findings of strange and narrowed veins in many patients with MS with the background research completed by Dr. Schelling and other scientists before him.
Now, the Internet is not only making connections for scientists, but also for patients. Desperately unhappy MS patients are using the Web to demand doctors investigate this theory quickly.
And from his post in Austria, Dr. Schelling is trying to help patients navigate all the uncertainty, via the Internet, the tool that helped push an old theory into the 21 century. The research may prove this may be far more complex than just opening up blocked plumbing, but he is celebrating the worldwide investigation.
"This is just the beginning, but a very, very great beginning."
The Italian doctor behind the theory that multiple sclerosis is a vascular disease says patients with no other option should get the treatment now instead of waiting for proof it works.
"They do not have time," said vascular surgeon Dr. Paolo Zamboni in an interview yesterday with The Spectator.
"I can totally understand the desperation of people without treatment that day by day are worsening."
He's urging governments to provide and fund, on compassionate grounds, the treatment called the liberation procedure. It involves inserting stents or balloons to open up malformed or blocked veins in the neck, which Zamboni believes plays a significant role in MS.
He says too many patients -- particularly from Canada -- are travelling abroad to get the procedure. He's had 56,000 MS patients worldwide, including thousands from Canada, contact him about getting tested or treated.
"I recommend to treat these patients in their home country," he said.
"Canada... is in the perfect position to offer to their patients this treatment."
Zamboni says it's "safe and cheaper" for patients who are rapidly declining, have tried all drugs treatments available and have no other options.
In contrast, he recommends MS patients who are not getting worse and have other treatments available should wait for more evidence before getting the procedure.
But the Ontario government considers the treatment to be "experimental" and won't fund it for anyone without more evidence that it works, says Ministry of Health spokesperson Andrew Morrison.
There are also no doctors in Canada providing the liberation procedure to MS patients.
Doctors and researchers overwhelmingly recommend patients wait for more evidence that malformed veins play a role in MS and that the treatment works.
Hamilton researchers are embarking on a study to test Zamboni's theory called chronic cerebrospinal venous insufficiency (CCSVI) that so far has been primarily funded by MS patients themselves.
The study, which will use MRI scans and ultrasound to compare the veins in the head of 100 MS patients with varying degrees of illness to 100 similar healthy people, needs at least $400,000 to get off the ground.
Zamboni says patients and their families shouldn't have to pay for the research themselves considering the promise his theory holds to revolutionize the treatment of MS, which until now was thought to be an autoimmune condition.
He believes research dollars should be freed up to test his theory.
So far only the Multiple Sclerosis Society of Canada -- after being pressured by patients -- has offered funding in Ontario and it's limited to $200,000 over two years.
"We need really to investigate CCSVI," Zamboni said. "It is irresponsible to not fund completely this kind of research."
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.
"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.
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.
這手術給了激起了患者希望也激起了某些爭論
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.
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.
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.
目前證實氣球擴張比支架安全
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.
a: 台北榮總神經醫學中心 找胡漢華教授北榮研發了一套以彩色超音波作頸部靜脈檢查方法，開始找尋與靜脈回流障礙有關之疾病ex:MS,腦中風等。 b: 台北馬偕醫院目前有套先進的「靜脈攝影」(附註)
c: 美國紐約州水牛城大學 找 澤瓦迪諾醫生(Dr. Robert Zivadinov) [能做頸部以及胸腔靜脈檢查]
d: 美國紐約州水牛城全科醫院神經影像分析中心 找 桑伯尼醫生(Dr. Paulo Zamboni) [能做頸部以及胸腔靜脈檢查]
2. 若確定有狹窄--> 要如何處理? 现在的手术方法主要是二种，氣囊(ballon)和支架。
a. 氣囊非常安全，但是再復發相對比较高，就是擴張的血管再度狭窄。
b. 支架不容易出现重新狭窄，但是会有一些风险，比如脱 落，等等。
因为现在的支架都是用于動脈，放在静脈的效果不是太好。以后可能需要设计出專門的静脈支架。
在台灣行之有年的療法是「氣球擴張術」(ballon)
c. 這方面的手術屬於-->「胸腔暨血管外科」, 所以確認之後請找相關的胸腔暨血管外科醫師討論進一步的手術
d. 目前已有MS病人遠至波蘭手術, 請找Dr. Marion Simka,手術費用約USD 10,000
經驗案例分享:
除了之前加拿大女生Wendy的例子(也至波蘭...) 還有其他二兄弟手術後的报道，马上感觉MS有好转。手术过程似乎很简单，只花了25分钟，麻药都不需要。請見下文:
Ottawa man sees improvements after surgery to treat MS
An Ottawa man who has multiple sclerosis is experiencing immediate improvements after undergoing vascular surgery in Poland to help treat the disease.
Evan Thornton and his brother Duncan both have MS, the most common neurological disease among young Canadians.
The pair were inspired by a new approach to treat multiple sclerosis and travelled to Poland last week to undergo what's still considered experimental surgery.
"Nobody's saying that you go back to the way you were before you had MS. But the big thing for any MS patient is to stop the progression and I think that's what people are trying to get out of this surgery," said Thornton.
The surgery lasted about 25 minutes, opening up a vein in Thornton's neck. It was done without anesthetic.
He is now on blood thinning medication to ensure blood clots don't develop near the stent that's keeping his jugular vein open.
Improved walking, better circulation
Thornton saw improvements immediately. He can already walk better, and he has improved circulation.
"I've got warm feet, warm hands. That's been a big difference. That's what we noticed right from the beginning. Most people with MS, your extremities are ice cold in the morning," Thornton told CTV Ottawa.
Before the surgery, Thornton was taking one of five disease modifying therapies currently available to help slow down the disease. The treatment involved giving himself a needle every day.
Although he believes the drugs were helping him, the disease was still progressing -- affecting his ability to walk and type.
When he heard about a new approach to MS developed by Dr. Paolo Zamboni in Italy, Thornton jumped at the chance to learn more.
Zamboni's research suggests some of the symptoms of MS may be caused by blocked veins in the neck, which he believes leads to a higher density of iron deposits on the brain.
More research needed
Still, there is much to learn about the procedure and the lasting affects on patients who have MS.
Although patients who've undergone the surgery have experienced drastic improvements, doctors are unsure how long those improvements will last.
"We don't know what will happen after five or 10 years, so we cannot say for sure that it might be a treatment in the long-term," said Dr. Marion Simka, who performed the surgery on Thornton and his brother. The procedure is not yet performed in Canada, where medical authorities are still studying Zamboni's research.
However, MS patients who want to have the surgery can travel to other countries, such as Poland, to pay for the procedure. Thornton paid $10,000 for the operation.
A experimental treatment for multiple sclerosis is pitting desperate patients against the medical community, which is demanding more testing, further studies and strict proof of the results.
Online and from around the world, patients with MS are pushing their medical systems to look at the possible link between CCSVI and the disease. The provocative theory was actually suggested and dismissed decades ago.
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