病友ccsvi的經驗 有手術影片

在來看看又一位病友手術過程中的影片

Amelie's CCSVI precedure in Albany, NY August 6th 2010
在紐約州的阿耳巴尼 8/6號做的結果


在影片當中，可以看到左方的頸靜脈阻塞，由側面的圖可以看出顯影劑的流向(流到脊椎後面去了)
在氣球擴張完了之後，顯影劑只順著頸靜脈流向心臟，沒有流到脊椎後面去

病友ccsvi的經驗 有手術影片

多發性硬化症患者尋求 靜脈擴張治療

Multiple sclerosis patients seek treatment that promises 'liberation'看看病友和醫師的說法

引述KOMO news 來自西雅圖的報導Story Published: Oct 28, 2010 at 11:14 PM PDT

Story Updated: Oct 29, 2010 at 12:09 AM PDT

SEATTLE -- It's a movement among patients that is unprecedented. People with multiple sclerosis are demanding access to a treatment they believe can stop the progression of the disease, even erase the devastating symptoms. They call it the liberation procedure, and it's being fueled by personal accounts and posts on the Internet.

YouTube and Facebook are flooded with the stories of MS patients before and after "liberation," jumping, jogging and leaving wheelchairs and walkers behind. Many report great improvement in MS symptoms.
目前Youtube網站和facebook網站出現了許多多發性硬化症患者的故事，特別是靜脈擴張治療前後的故事：能夠跳躍，離開輪椅或助行器，並且自己步行，有許多或的很大很好進步的報導!

Italian doctor Paolo Zamboni from the University of Carrera ignited the fire with the theory that MS may not be an autoimmune disorder, but instead the result of abnormal blood flow to and from the brain.

"I found the evidence of narrowing of the vein just in MS patients," said Zamboni.

The theory is called Chronic Cerebrospinal Venous Insufficiency, or CCSVI. The idea is because of strictures or blockages in the veins that drain blood from the brain and spinal cord, the blood backs up in the brain, creating dangerous iron deposits and eventually lesions that cause the symptoms of MS.

"I thought, well, if they're blocked, you open them. So I had them opened and I had immediate and profound relief," said Kathleen Lynch of Seattle.
一位病人Kathleen Lynch說：我想，若靜脈阻塞，那麼我必須要打通靜脈，我有很強且深厚的信心。

Lynch travelled to Egypt for a venoplasty, a procedure in which a balloon is inflated within the constricted veins, relieving the backflow, or reflux of blood to the brain.
Lynch旅行至埃及做了靜脈氣球擴張術，解決了血液回流至大腦的問題。
She describes the disappearance of her MS symptoms like headache, fatigue, brain fog and coldness in the hands and feet.
Lynch描述了他的症狀：頭痛，疲累，手腳冰冷，腦霧等症狀都不見了。
The accounts have helped create a legion of MS patients demanding to be tested and treated for CCSVI.

"When you see in your doctor's office a 3D image of your brain and only 10 percent of the blood is getting through that vein, it's a eureka moment! You know that needs to be fixed; you can't sit there and do nothing," said Blake Lemberger, another MS patient who says his symptoms almost disappeared after he was treated for CCSVI at Stanford. But that program was shut down after a patient died from rare complications of the procedure.
另一位病友Blake Lemberger(他是在史丹佛做的手術)也說：當你在醫師的辦公室看到你的大腦3D影像中只有10%的血流能夠通過靜脈的時候，你就知道這個必須要獲得改善和解決，你不可能就只是乾坐在那兒而什麼都不去做，這形同自己看著自己死去。

MS patients in the Seattle area, who've connected through Facebook, say most neurologists won't recommend the treatment, forcing them to travel, sometimes to faraway clinics to get it.

"I went to Egypt by myself for my angioplasty, never been there, seen the hospital, or met the doctor. People said, 'Oh, you're brave,' and I said, 'No, just desperate,"' said Lynch.
Lynch說：我隻身到埃及去做手術，當地的醫院醫師從未蒙面。 人們知道了都說：你真勇敢！ 我只是迫不及待罷了。(當然囉，誰會希望自己看著自己一天天的退步殘障呢?)

But Dr. James Bowen, who's been treating MS patients in Seattle for 27 years, says the theory is problematic. He says it's difficult to explain how blockages in the neck could affect so many parts of the body that are affected by MS, like the eyes.
Dr. James Bowen他認為對於眼睛的部分很難用靜脈窄話來解釋 (其實這個部分 榮總胡醫師曾做過研究，其實眼睛的症狀和靜脈血液回流有相關)
"The theory has limitations, but as scientists, it's very important to keep an open mind. To embrace CCSVI would require us to scrap the old theories. Science, in general, and my colleagues - we're more than willing to throw away old theories and adopt new ones if sufficient evidence can be raised to support that," he said.

Bowen says the CCSVI theory is generating excitement like other possible cures that come along every two or three years, though this has gotten more attention because of the Internet.

"A lot of the excitement about this has been pushed not by the scientific literature as it has by the social media and patients getting together and getting excited about this," Bowen said. "The danger this time, a lot of the legitimate concerns of the scientific community have been viciously attacked in the blogs and the other social media outlets. Rather than expanding the discussion it has shut down a lot of scientific discussion of this, which is really unfortunate." (Watch entire interview with Dr. Bowen) 請點選看完整影片訪問過程或看看下面即可

Most neurologists say they need data and controlled studies on the vascular theory to be sure results aren't just the placebo effect. They say they first need studies to show if MS patients have more blocks than other people. Until then, they can't recommend the angioplasty for CCSVI.

But patients say they can't afford to wait years for double blind studies and will go wherever it takes to be tested and treated for CCSVI. Many from Seattle are headed to San Diego to be "liberated."
MS病人說他們無法再繼續等，而願意到任何地方願意做CCSVI檢查甚至手術的地方。
所以有很多MS病人從西雅圖到聖地牙哥尋求手術

Tarah Virgil and Danielle Rhéaume are among them. They met through the Seattle Facebook site for CCSVI.

Virgil was disabled six years ago with migraines, vision problems, fatigue, pain, and muscle spasms from MS. Rhéaume's diagnosis in May helped explain the physical pain and emotional problems she'd been suffering.

They were both diagnosed with CCSVI by neurologist Dr. David Hubbard, who learned of the CCSVI theory when his son was diagnosed with MS.

Tarah Virgil and Danielle Rhéaume 兩個病患就是從facebook上認識，而是由聖地牙哥Dr. David Hubbard 神經科醫師診斷出靜脈窄化的結果。David Hubbard 神經科醫師的兒子也是罹患MS，他也是因此學習到CCSVI靜脈窄化的理論

"It became clear to me the theories and treatments for MS were unproven and ineffective," the doctor said.

Hubbard's son says his symptoms disappeared after he was treated for CCSVI.

"I used to not be able to stand on one foot. I was irritable and tired all the time. I don't have any symptoms now," said Hubbard's son, Devin.
David Hubbard 神經科醫師的兒子說他的症狀在做完靜脈擴張術之後都消失了!"我以前無法用一隻腳站立，而且時常焦躁，和疲累。現在，我都不會了。

(Watch entire interview with Dr. Hubbard) 請點選看完整影片訪問過程或看看下面即可

Virgil and Rhéaume say the procedure at a San Diego vein clinic was simple and painless.

" I don't think people should be fearful of this procedure at all. For me, I was more fearful of living with this disease progressing," Rhéaume said.
Rhéaume說：我不認為所有的病友會懼怕此一手術，對我而言，和個病生活在一起讓我更恐懼，更遑論這個病的病情一再的加重。

"If you compare it to the treatments I've been on to try to lessen my symptoms or slow the progression of my MS, I'm not scared of the risks. It's really nothing compared to the risks of the other things I've tried", said Virgil.
Virgil說：若把靜脈擴張術和其他其他治療方法做比較，我已經讓我的症狀減緩，而且讓MS的進程變慢了。我不怕風險，和其他的風險比起來，這根本不算甚麼
We visited both women seven weeks after they were treated for CCSVI. They report different results.

Rhéaume says she feels about 85 percent better.

"I feel a lot of major improvements. My fatigue is definitely gone, I almost have too much energy. My tremors have greatly reduced. My pain medicine is about half what it was. I'm not as sensitive to temperature changes, and my mental acuity is better.

"I'm way less sensitive and emotional. The depression is basically gone, which is great because it was one of my worst symptoms. So I'm ready to start working and doing the normal stuff I've been wanting to do," she said.
Rhéaume說他好了85% ，我不再疲累，顫抖的情形減少，止痛藥服用的劑量也減半了，我對於氣溫的改變不像之前那麼敏感，心智上變得較好。我不再那麼敏感和情緒化，也不再憂鬱，因為這是我最糟的症狀之一。現在我已經準備再開始工作了
Virgil has had MS for several more years. Her report was mixed.

"The main thing I feel so far is improved fatigue. My energy level is greatly improved since the procedure. And that's a big thing. Also, I would get a loud wooshing sound in my head, which would be so loud I couldn't drown it out or focus on anything else. That's completely gone," she said. "I still have pain and cramping, muscle spasms, and headaches. I still have all of those symptoms."

Virgil says she hopes to see more improvement with time, but encourages MS patients to have realistic expectations.
Virgil說： 讓我感到改變最大的就是疲累感大大的降低，這對我來說也是最大最好的改變。而且我頭內的雜音不見了，以前這個很況擾我，讓我無法專心。但是我仍有抽筋頭痛的症狀。他希望隨著時間能夠看到更多的進步，也鼓勵其他病友要有實際一點的期望(期望不用太大) 雖然只有兩個症狀的改善，但她覺得還是很值得。 他說：若要我每個月都做，
"If this is the only benefit I have...improved fatigue? It was worth it. If I had to do this monthly, I would do it in a heartbeat over the options I've done in the past, because the side effects of the treatments made me so much sicker," she said.

Interventional radiologists who perform the angioplasties have come out in favor of clinical research of CCSVI, saying, "Venous interventions may potentially play an important role in treating some patients who suffer from multiple sclerosis".

"If we were to get referrals from neurologists today, we could do procedures tomorrow," said interventional radiologist Dr. Torre Andrews of Seattle Radiology. "The problem is most the patients who've contacted us have neurologists who either can't or won't refer them for treatment."

Andrews has done a few angioplasties on MS patients, and has received hundreds of calls in his office from MS patients wanting him to do the procedure.

"We would like to make it available to anyone who needs it. It's been difficult, because we are specifically trying to avoid running an angioplasty mill where we treat anybody who walks through the door, regardless of their background and their previous therapies and the involvement of their neurologist," he said. We feel it's important to have the neurology community be involved to help us select patients appropriately, to document function and to continue to manage patients."

Andrews believes it's possible to provide the treatment and collect data at the same time without waiting for double blind studies that will take years to do and millions of dollars to fund.

"To ask those people to wait while we do studies is very difficult. This is not like doing stem cell transplants to cure a hang nail. It's pretty much the opposite. It's more like saying if we treat your hang nail, maybe your cancer will go away. To say that patients will have to wait five, 10 years for the studies we all want to do is very difficult," he said. (Watch entire interview with Dr. Andrews)

Hubbard agrees. He's one of the only neurologists in the country recommending the CCSVI treatment for MS patients. In the 70 cases he's evaluated and sent for treatment, he says all but two have reported no change or have had improvement. Most of the symptoms that have gotten better are vascular, such as headache, fatigue, brain fog and coldness of the hands and feet.

Hubbard醫師說 70位MS病患被檢查出靜脈窄化，且經過了手術，只有2位發現手術前後沒有改變。
"I find that to be compelling..so compelling that it's really a mystery to me that my neurology colleagues are not only showing no interest, they're actually hostile about it," he said. "If we weren't doing what we're doing not only here in San Diego, but across the country, we have a multi-center trial now, these people would be lost to follow up. Right now, they're going to Europe, Bulgaria, Egypt, and Kuwait. That data's not being collected by anyone. At least we're collecting the data, having everyone come back in six and 12 months. I think if we just waited for a double-blind controlled study, it would never happen." (Watch entire interview with Dr. Hubbard)

Virgil and Rhéaume are among the handful of Seattle patients being followed in Hubbard's study. They say they are excited to be a part of the research that may find some answers about treating the horrible disease of multiple sclerosis.

"In the past, we didn't have YouTube and Facebook and Google. But now we're finding this out on our own and demanding it be researched," said Virgil. "It's really a patient driven movement that we're saying this needs to be looked into because what's been done all these years is NOT working."

"A major number of people with MS are developing a relationship out there. They're tired of not having a cure. And they're tired of drugs that don't work and cost $3,200 to $7,000 a month and don't cure a disease. They're fed up!" Rhéaume said.

Hubbard says his practice charges $3,500 for the MRI to determine if CCSVI exists. The interventional radiology treatment costs about $7,500. Because the treatment is not experimental and FDA-approved, he says most insurance policies have been covering it as a treatment for venous obstruction, not MS.

Both women say it's a small price to pay for the hope provided by what they call being "liberated."

"There are so many people who have MS or who have a relative or friend with MS, who don't know about this. This information can be life-changing," said Virgil.

"It's a movement. We're activists, basically," added Rhéaume. "We all have to take our health care into our own hands. It's wonderful to have an option, to have hope with a disease you've been told there's no cure, there's no hope."



Dr. Hubbard connects MS to CCSVI theory


Raw interview with Dr. Andrews on MS

多發性硬化症患者尋求 靜脈擴張治療

CCSVI 靜脈擴張術後4個月

我手術後4個月的情況

靜脈擴張術後4個月, 在室外慢慢的走路，走完後下肢仍較緊繃和麻，不過可以進步至此，我已經很開心了!

CCSVI 靜脈擴張術後4個月

如何用核磁共振掃描去檢驗出靜脈窄化的結果?

以下的影片說明和討論了 CCSVI Imaging

手術前如何利用核磁共振掃描的掃描技巧(protocol, contrast....等等的技術)

去量測靜脈的血流,...



想知道更多?
Please visit CCSVI Alliance's website at www.ccsvi.org

知道更多，會更放心，更有信心，也會更小心!
知識就是力量

如何用核磁共振掃描去檢驗出靜脈窄化的結果?

CCSVI Before and after 靜脈擴張手術前後對照

看看Susan的故事

為他高興!!


想知道更多Susan手術前後的影片嗎?
請到以下連結囉!
閱讀更多:http://www.youtube.com/user/alma4me

CCSVI Before and after 靜脈擴張手術前後對照

CCSVI 靜脈窄化的特殊例子CCSVI in the Transverse Sinus

CCSVI in the Transverse Sinus

在網路上搜尋到的病友 Rachel他的靜脈窄化處和我的地方有點接近
Rachel(得到MS 12 年)雖然在頸靜脈做了靜脈擴張, 但是他的狀況似乎未完全恢復, 後來再經過檢查和進一步的掃描之後發現另一處窄化的地方:位於大腦下，頸靜脈上端的Transverse Sinus
聽聽他的說法:

Rachel Quilter prior CCSVI March 16, 2010 頸靜脈擴張前

My Journey with CCSVI and IIH Part 2 Rachel Quilter 頸靜脈擴張後

說話的速度變流利一點...

Rachel Quilter status update Sept. 1, 2010

The stenosis in my leg has nothing to do with the theory. I just feel that if I have stenosis in my leg, then I'm likely to have stenosis in other places.

最終診斷結果 :CCSVI in the Transverse Sinus (special case)

所以對於做完此手術者若未有很大的改變者，是否意味著其阻塞的位置位於Transverse Sinus? 這樣的話，要擴張此處並不容易，需要更有經驗的醫師，據了解，史丹佛醫學院的Dr.Michael Dake 也曾經看過窄化處位於此Transverse Sinus

的病例....

閱讀更多:
http://www.youtube.com/user/z1sargent

大家可以再對照之前我的診斷結果

我的診斷結果,給大家參考

.....由頸靜脈直接注射顯影劑觀察由頸靜脈回流的情形--> 在從右頸靜脈頂端注射顯影劑時，發現顯影劑無法達到更深入腦部的右Sigmoid Sinus(這是與右頸靜脈連接的部份)，顯示此處壓力甚大，或者是兩者之間有一個阻塞處存在！....

CCSVI 靜脈窄化的特殊例子CCSVI in the Transverse Sinus

國外有關CCSVI的病患資料庫已經建立

請看以下影片:
也是一部令人動容的影片...

CCSVI-Tracking shows the effect of the Liberation Treatment in MS patients in graphs.
You can now create your own graph to show the effect of your CCSVI-treatment.
Aggregated graphs show the average effect of the treatment among the participants.
Please participate and help to establish the validity of the Liberation Treatment!
做過此手術的人也請上此資料庫更新吧!

國外有關CCSVI的病患資料庫已經建立

聯合幹細胞研究，以探討多發性硬化症

聯合幹細胞研究，以探討多發性硬化症

21. October 2010 01:02

一個投資 22萬美元的項目由維多利亞州和加利福尼亞州的研究人員將評估是否幹細胞療法可以用來防治疾病，如多發性硬化和1型糖尿病，並有助於器官移植。
梁寶榮在AusBiotech 2010年墨爾本的今天，創新部長加文詹寧斯說，布蘭比工黨政府作出了貢獻五七五五〇五美元到項目中，第五次獲得資金通過二千八百點○○萬美元維多利亞，加州幹細胞聯盟成立於 2008年根據生物技術戰略發展計劃。

“數以百萬計的世界各地的人們患多發性硬化症，糖尿病或需要器官移植。像這樣的創新性自身免疫性研究的關鍵可能是他們的生活質素提高，“他詹寧斯說。
“這個項目是非常重要的我們更多地了解如何調節免疫系統，為了提高潛在的幹細胞衍生的組織移植治療，以打擊 MS和其他條件。”

“該項目突出了合作的價值與世界領先的中心，如維多利亞州和加利福尼亞州的生物技術和幹細胞研究。這又是我們的承諾示範採取行動，改善生活質量的數百萬世界各地的人們。“

與 MS，人體的免疫細胞攻擊中樞神經系統，影響神經細胞的能力在大腦和脊髓互相溝通。該項目將評估幹細胞的使用方法，開發替代療法為 MS。

領先的神經免疫學家克勞德伯納德教授莫納什免疫學和幹細胞實驗室，國際知名的為他工作的基礎的MS，將領導的研究小組在墨爾本。溫伯格教授肯尼思領導斯坦福大學隊。

詹寧斯說 “目前的初步觸發器激活多發性硬化症仍下落不明，但許多研究顯示，在發展的MS，人體的免疫系統發揮作用”

“這項研究的成功是至關重要的到達目標的安全，成功地利用幹細胞療法來治療疾病和再生組織。”

多發性硬化症影響全球約 250萬人。在澳大利亞，據估計，大約有18000人與 MS。大約三點五五萬美元每年花費在治療多發性硬化症的個人。

加州再生醫學研究所的合作項目，資金 160萬美元的研究夥伴在加利福尼亞州。

聯合幹細胞研究，以探討多發性硬化症

Breakthrough Surgery Hope For MS Sufferer

Breakthrough Surgery Hope For MS Sufferer - News - Ely Standard

Teresa Lloyd wants to dream again. The 46-year-old mother-of-three has Multiple Sclerosis and the debilitating disease has robbed her of dreams and aspirations for the future. She mitigates the pain and overwhelming tiredness by managing her energy levels to carry out daily tasks and provide quality time for her family. She knows a wonder drug in her lifetime is unlikely, 
but after 10 years of 
worrying about what 
the future might hold
she has finally been 
given hope of staying 
 in control of this life-limiting and progressive disease. DEBBIE DAVIES reports.

LIKE most MS sufferers, Teresa Lloyd experienced a myriad of signs and symptoms before she was finally diagnosed with the disease which affects up to 2.5 million people worldwide.

In her case it took almost 10 years before she was given a diagnosis, and even then she was told it was “probably MS”.

The first clue came in 1992 when she was pregnant with her first child. She dropped the telephone after pins and needles shot up her arm, but negative test results left her doctor to conclude the “baby was sitting on a nerve”.

Over the next few years her energy levels dropped dramatically and some days the joint pain would be so bad that she would literally have to thump her legs to get the circulation to return.

Then in the summer of 2003 she had more tests which suggested she had an inflammation of the spine, which essentially is what MS is, and finally she was given the confirmation that the pins and needles, joint pain and debilitating tiredness that would suddenly and unexpectedly wash over her, all combined to have a cause that had a name, MS.

Teresa admits that after years of frustrating symptoms and pain her first reaction was one of relief.

“I suddenly felt like I wasn’t going mad and all these things I had been feeling and experiencing were not in my head.”

Seven years on, she needs a daily cocktail of drugs to ward off the tiredness, she can’t walk far without a stick and unless she paces herself she will need days to recover from any over-exertion.

“I miss lots of things. I miss dancing and riding a motorbike and even silly things like not being able to wear high heeled shoes,” she says.

“But the tiredness is the worst thing. I plan the day so that I have enough energy for the children after school. That means doing simple thing like dividing up the housework and doing the upstairs one day and the downstairs the next. I just want to dream again. I don’t dream anymore.”

It was through this process of grieving for the life and energy she has lost through MS that Teresa decided to look for answers outside the NHS.

“I was pulling my hair out; I thought there’s got to be more to life than this so I started doing my own research. There are drugs out there, but if they have not undergone clinical trials in this country then they are just not available even if they are being used elsewhere in Europe or America.”

Her research finally led her to Italian vascular surgeon Dr Paolo Zamboni and his discovery that 90 per cent of MS patients also have a condition called Chronic Cerebrospinal Venous Insufficiency (CCSVI) which can be treated with surgery. Zamboni, whose wife has MS, realised that veins and the pathways that carry blood from the brain back to the heart can become blocked or narrowed in MS patients in a similar way to CCSVI patients. Zamboni’s clinical trial, he carried out 65 operations on people with MS, resulted in 73 per cent of his patients having no symptoms after two years after surgery.

Teresa will undergo a scan at a private clinic in Scotland next week to determine whether she has any blockages or narrowing in her veins which will make her eligible for surgery.

“CCSVI and MS are not the same but Zamboni’s research makes sense because most of the symptoms of MS are circulatory – the pins and needles and the cold hands and feet – so it makes sense that it would all be to do with blood flow.

There has been some negative press about this particular treatment, but in this country we are prepared to spend £30,000 a year on drugs for MS patients that are not even 90 per cent effective.

If the scan is positive, Teresa will then have to find £5,000 to have surgery in Italy.

“It does make me cross and it does frustrate me that if the test is positive and I can have the operation that I will have to pay for it myself.”

And while she knows the surgery offers her hope, she also knows the future may be bleak without it.

“I know that CCSVI doesn’t cause MS, but it is something that happens to people with MS, and it is my body and I want to do this.

“It would be wonderful to be able to think more clearly and not have this horrible brain fog.

“I am realistic about the surgery. If it stops the MS from getting any worse that will be great and anything else is a bonus. If someone with MS is in a wheelchair, they are not going to undergo this procedure and get up and walk, but for someone like me, it may mean I don’t end up in the wheelchair. I don’t want to give into MS and this gives me hope. I’ve got MS, it hasn’t got me.”

debbie.davies@archant.co.uk

Breakthrough Surgery Hope For MS Sufferer

第26屆歐洲MS治療研究委員會議 CCSVI新消息

Percutaneous Endovascular Procedure Proven Safe and Tolerable in Patients With MS: Presented at ECTRIMS

By David S. MacDougall

GOTHENBURG, Sweden -- October 17, 2010 -- A minimally invasive endovascular treatment for chronic cerebrospinal venous insufficiency (CCSVI) has proven safe and well tolerated in a small group of patients with multiple sclerosis (MS), according to a report presented here at the 26th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS).

CCSVI is a condition characterised by multiple strictures at the level of the main extracranial cerebrospinal venous outflow tracts that may interfere with normal venous drainage. CCSVI has been implicated in the pathophysiology of MS, but the association remains unproven and controversial.

A group of 15 patients with MS were enrolled in a longitudinal pilot study of endovascular treatments described here on October 14 by Paolo Zamboni, MD, Vascular Diseases Center, University of Ferrara, Ferrara, Italy.

All subjects had CCSVI as previously determined by magnetic resonance imaging (MRI) studies, and were treated with standard disease-modifying MS therapies. Half of the patients received immediate endovascular treatment and the other half received delayed endovascular treatment 6 months after study enrolment.

Endovascular treatment consisted of selective venography of the cerebrospinal vasculature complemented by percutaneous balloon dilatation when indicated. All patients were prospectively evaluated with sonography, MRI, and clinical examinations for up to 12 months following endovascular treatment.

No serious adverse events were observed during the study. One patient developed a transitory vasovagal syndrome about 1 hour after endovascular treatment.

Restenosis occurred in 29% of the patients (2 in the immediate endovascular-treatment group and 2 in the delayed endovascular-treatment group) between 3 and 12 months after endovascular treatment. No significant worsening of MRI or clinical features was observed in either group following endovascular treatment.

The T2 lesion number decreased significantly in the delayed endovascular-treatment group during the time between initial study enrolment and the 6-month follow-up after endovascular treatment (P =.0227).

Additional and larger studies are needed to determine the potential role of endovascular treatment in the treatment of patients with MS, Dr. Zamboni concluded.

Funding for this study was provided by Hilarescere Foundation.

[Presentation title: Endovascular Treatment for Chronic Cerebrospinal Venous Insufficiency in Multiple Sclerosis. A Longitudinal Pilot Study. Abstract P508]

第26屆歐洲MS治療研究委員會議 CCSVI新消息

前任加拿大多發性硬化症協會主席都尋求到美國做靜脈擴張術

Former Multiple Sclerosis Society of Canada chairwoman says she cannot wait for Canada to support experimental procedure
連加拿大多發性硬化症協會的前任主席都無法忍受目前加拿大政府對於靜脈擴張術的腳步~
閱讀更多:
Councillor's daughter to seek disputed MS treatment in U.S.

A former MP and current city councillor in Victoria says neither policy nor politics is going to stop her from going abroad and paying for a controversial treatment for her daughter's multiple sclerosis.

一位現任加拿大維多利亞城市委員 表示 即使政策和規定都無法阻止他的女兒到美國就醫(靜脈擴張術)

Lynn Hunter, whose career includes terms as a New Democrat MP and also chairwoman of the Multiple Sclerosis Society of Canada, is attempting to raise money to send 34-year-old Megan to the United States for the so-called liberation treatment.

Her decision highlights the emotional debate facing those with MS, whose hopes have been raised by tales of dramatic results from a treatment that experts worldwide have greeted with skepticism.

Hunter says she understands the need for further analysis. But with her daughter now using a wheelchair because of MS, Hunter said she also feels justified in stepping outside the system and seeking, even paying for, treatment abroad.

"Of course, people will see there will be some role confusion. That's for them to deal with. I'm already dealing with it," she said this week.

"Megan doesn't feel she has the time to wait for the medical system to give it the green light. I understand that and I respect that. If you are in a wheelchair, to be able to climb even a stair or two, well that's something."

The federal and provincial governments have been under pressure to support access to the experimental procedure in Canada -- it was started by an Italian doctor and is being conducted in a handful of countries -- but its safety and effectiveness are the subject of debate.

The liberation procedure was first advocated in 2008 by Italian vascular surgeon Dr. Paolo Zamboni, who suggested blood vessels in the necks of multiple sclerosis patients were failing to drain properly, leading to harmful iron deposits in the brain. Zamboni's technique uses angioplasty, the insertion of tiny balloons, to open those blood vessels and liberate the movement of blood.

The procedure is now being performed in Italy, Poland, India and the U.S. Some MS patients have reported amazing results -- more freedom of movement, and an end to the debilitating pain, fatigue and the tingling sensations that typically accompany their incurable disease.

Provincial governments in Canada have agreed to form a working group that will look at making preparations for clinical trials of the angioplasty procedure.

Todd Abercrombie, executive director for the Multiple Sclerosis Society of Canada, Southern Vancouver Island Chapter, said $2.4 million in studies of the liberation treatment were fast-tracked at four research centres across Canada. Result updates are expected within months.

Experts have suggested that any benefits are the result of a placebo effect, rather than the treatment itself. They've cautioned people against paying thousands of dollars for travel and a treatment that may not work.

Previously, the disease was in the domain of neurologists because it progresses as the fatty sheaths surrounding nerves deteriorate, leaving them less capable of transmitting impulses controlling things such as muscle movement.

Hunter said that as someone who had worked closely with the Multiple Sclerosis Society, she understands the go-slow approach.

Nonetheless, she is organizing an auction of items donated by friends to raise money toward the $10,000 to $15,000 that Megan needs to go to Seattle or Albany, N.Y., for liberation treatment. Megan is on waiting lists at two institutions.

© Copyright (c) The Vancouver Sun

----------------------------------------

我只能說 政策是一回事, 親自遇到了 又是一回事... 現在連加拿大MS協會的委員都願意跑出加拿大尋求恢復的方法...

Lynn Hunter 的女兒是個多發性硬化症 病人, 他再也無法忍受自己34歲的女兒只能坐著輪椅, 連一兩階樓梯都無法爬的生活.

沒有親身經歷, 你是絕對無法感受到的....

前任加拿大多發性硬化症協會主席都尋求到美國做靜脈擴張術

第26屆歐洲MS治療研究委員會議 CCSVI新消息

CCSVI--the new strategy to come out of ECTRIMS---
會中的討論很棒, 值得大家參考!!

There are two new studies that are approaching CCSVI from a new angle...that of proving that CCSVI is not the cause MS. They both look at clinically isolated syndrome (CIS) and early MS are conclude there is no CCSVI. Both studies appear to be doing the doppler and venography testing incorrectly, and we'll get into more specifics tomorrow...but what I found interesting is that these studies actually found CCSVI in more progressed or later-stage MS. They do not deny CCSVI exists...but they are trying a new tactic. They are saying CCSVI is created DUE TO brain damage from MS. It's the old chicken and egg switcheroo.

Here's why this is interesting. It is obvious that the correlation to CCSVI and MS is undeniable. More and more patients are coming forward with positive venograms showing stenosis and reflux in the central veins. It is becoming impossible to ignore or deny. So, the neurologists and MS specialists are going to re-write the script and say, Yes...you do have CCSVI. But it's because you have MS. MS causes CCSVI. Let us treat your MS with our drugs, and your CCSVI won't progress.


Now, this was the question raised by the Alberta document (maybe MS causes CCSVI?) and I think those who hope to disprove CCSVI were very smart to pick up on this line of logic. Problem is...CCSVI exists. And it exists early in the MS disease process. Other doctors are finding it in early MS and clinically isolated syndrome. I've told the story of Dr. Dake testing the daughter of one of his first patients, and finding she had occluded veins, even though she did not have an MS diagnosis. She later had an MRI, and there were the white matter lesions. Dr. Dake treated her with angioplasty, even before she ever had an official MS diagnosis. The other daughter had great veins, no CCSVI and no MS. And Dr. Zivadinov told a similar story in Bologna, about the daughter of an MS patient in his study who was part of the healthy control group. Sure enough, she had CCSVI and it was a few months later she showed white matter lesions on MRI and received an MS diagnosis. And this is happening world wide.

Those who've been following this page already know that Dr. Byung B. Lee and a panel of international vascular experts have classified CCSVI stenosis as truncular venous malformations, formed in utero. Here's Dr. Lee's paper.

http://www.fondazionehilarescere.org/pdf/03-2518-ANGY.pdf

And we also know that these truncular venous malformations grow with the body, and get progressively worse with age. And yes, as inflammation in the body increases, the stenotic lesion will worsen as well. MS is a chronic disease which progresses over the duration of the disease...and venous malformations get worse as the body ages and disturbed blood flow continues to damage the veins. Chronic venous disease gets worse. CCSVI gets worse.

So, be prepared for the neurologists' new tactic...telling you that your MS has created your CCSVI. It's getting more interesting all the time....til tomorrow---

Joan (參與研討會者)
------------------------------------------
會中有一派說法 說MS形成CCSVI 請看原文第1段 (these studies actually found CCSVI in more progressed or later-stage MS)

另一派的說法是 : CCSVI形成MS. 特別是在MS發展初期階段, 就可以看到CCSVI的 請看原文第3段 由美國史丹佛Dr. Dake的病人以及 Dr. Zivadinov的病人也都有看到同樣的狀況.. 在CCSVI症狀已經被診斷出來的時候, MS的症狀尚未出現(腦部未出現斑塊), 但是經過血管擴張之後, MS也不會再繼續發展..

共識: It is obvious that the correlation to CCSVI and MS is undeniable. 毫無疑問的，兩者彼此相互關聯,Problem is...CCSVI exists. 問題是CCSVI的本身的存在 會影響中樞神經導致肢體的障礙!

若是前者的說法為真, 那麼MS衍伸出CCSVI的結果只會造成病人肢體殘障且無法回復之不可逆的結果,-->輪椅要坐一輩子, 永遠無法再用自己的雙腳行走.... (文獻指出有50%的反覆發作型的MS有可能進一步的轉變為Secondary progressive MS 也許就是因為這個原因吧。)

若是後者的說法為真, 那麼能夠在MS的初期(臨床症狀 如腦部的斑塊 尚未表現出來的時候) 就可以先診斷出CCSVI的症狀再加以處理，就不用進展到MS了.(Dr. Dake treated her with angioplasty, even before she ever had an official MS diagnosis.)

所以不管是哪一種原因, 不管是先有雞還是先有蛋, 狹窄的靜脈是一定要被擴張的，不然 病情只會隨著時間而繼續惡化!!

既然如此, 還有什麼可以爭論的呢? 就解決這個狹窄靜脈的問題吧!

第26屆歐洲MS治療研究委員會議 CCSVI新消息

Tim Donovan 去紐約執行靜脈擴張術

Tim Donovan went to N.Y. for liberation therapy

來聽聽他做完手術後的說法(文章中)

Newfound freedom: Fredericton Junction's Tim Donovon noticed an immediate improvement in his multiple sclerosis symptoms after undergoing angioplasty on his jugular vein last summer. He and his wife Mary are shown above after returning to Canada.

The Fredericton Junction man underwent liberation therapy in Albany, N.Y., in an attempt to alleviate health issues caused by multiple sclerosis. Donovan is coming to Woodstock on Saturday to speak with community members about his experiences with MS and liberation therapy.

He said that the two-hour surgery produced immediate, positive results.

"After the surgery I immediately had my balance and energy level back," he said. "My cognitive issues disappeared and I could walk fairly normally. I don't have to use a wheelchair anymore."

手術後我立刻可以平衡, 我覺得我的活力都回來了, 我可以像以前一樣走路,再也不用輪椅了!

Donovan suffers from relapsing-remitting MS, which means that his symptoms will worsen for a time and then seem to get better.

"When it comes, I am in a wheelchair for two to three months at a time, and when it gets better I have go to rehab," he said. "Then I can walk while holding onto furniture, but not for long distances because all of my right side is affected. I never have my balance and I walk with difficulty."

Before he had the liberation therapy procedure, Donovan was hospitalized for at least two months a year for the last four years.

"Now I go bowling every week and I can jump up and down with two feet. That is a big deal to someone with MS," Donovan explained. "People tell me they see the improvement every week when I bowl."

我現在每個星期都去打保齡球, 而且我可以跳2英呎高, 這對MS人而言幾乎是不可能的事情!大家都說我每星期都在進步!!

Liberation therapy is angioplasty of the jugular veins.

"Angioplasty has been around for 30 or 40 years, but it is new to people with MS," Donovan said.

"Last year W5 presented a program that told of this procedure that is having great results for people with MS," said Margaret Frenette, one of the co-ordinators of the Woodstock MS Self-Help Group.

"Italian doctor Paolo Zamboni believes there are abnormalities in the veins draining the brain and spinal cord in people with multiple sclerosis, and that these blocked veins are to blame for the debilitating disease. He suggests treatment for MS is to open the veins by inflating them with small balloons (angioplasty)."

The term used to describe this compromised blood flow in the veins is chronic cerebrospinal venous insufficiency (CCSVI).

"CCSVI is the venous anomaly. Neurologists have been going on the belief that MS is an auto-immune disease, now people are saying maybe it's vascular; that's the debate that's going on right now in Canada," said Donovan.

Donovan had to travel to New York for his surgery, as the procedure isn't approved for use on MS patients in Canada. It is, however, approved in the United States, Italy, Poland, Mexico and other countries.

"We feel like we are drowning in a pool and the government is standing over us with a life jacket, saying 'We can't throw this to you until we've tested it for 10 years.' I am making a plea on behalf of all people who have MS to have this treatment made available for compassionate reasons," Donovan said.

"We hired a lawyer and will be taking legal action in Ontario against the Charter of Rights and Freedoms, a charter challenge. Section 15 of the charter states that everyone in Canada is equal, whether they are disabled or not. It goes to court in the next 30 days.

"I'm not a lawyer, I'm not a doctor, I'm just a guy that got better."

Donovan will be speaking about his experience Saturday at 1 p.m. in the Carleton Civic Centre community room in Woodstock.

閱讀更多: http://dailygleaner.canadaeast.com/cityregion/article/1258640

Tim Donovan 去紐約執行靜脈擴張術

ECTRIMS 2010: Gothenburg, 瑞典 · 13-16 October 2010

26^th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) and the 15^th Conference of Rehabilitation in Multiple Sclerosis (RIMS) which will be held in Gothenburg, Sweden, 13–16 October 2010.
第26屆歐洲MS治療研究委員會議以及第15屆MS復健研討會將於十月13-16在瑞典Gothenburg展開

In past years, Dr. Zamboni was allowed to present a poster for display on his research of CCSVI in MS and iron deposition in MS brains, as it related to chronic venous disease. He has never been invited to speak before. Dr. Zamboni will be presenting his research along with Dr. Zivadinov in the Main Auditorium as part of the Charcot Foundation presentation, as they go up against Dr. Omar Khan, co-author of the first negative opinion piece in the Annals of Neurology: To say that this is a big deal is an understatement.

予會邀請的醫師來自英國,德國, 波蘭, 義大利, 甚至美國, 各方的研究和觀察到的最新資訊,不同的結果.
附上會議討論的議程特別針對CCSVI的研究現況如下:

Wednesday, October 13, 2010 12:35 - 12:45 European Charcot Foundation Chronic cerebrospinal venous Insufficiency. Relation to multiple sclerosis? (Main Auditorium)

CCSVI: from hypothesis to reality P. Zamboni (Ferrara, IT) (義大利醫師桑伯尼的研究)

12:45 - 13:00 European Charcot Foundation Chronic cerebrospinal venous Insufficiency. Relation to multiple sclerosis? (Main Auditorium) CCSVI: relation to multiple sclerosis R. Zivadinov (Buffalo, US)

13:15 - 13:30 European Charcot Foundation Chronic cerebrospinal venous Insufficiency. Relation to multiple sclerosis? (Main Auditorium) Questions on CCSVI in multiple sclerosis O. Kahn (Detroit, US)

On Thursday, Dr. Zivadinov is presenting results from the BNAC MRI studies -(美國水牛城醫學中心的研究)

Thursday, October 14, 2010 15:30 - 17:00 Imaging 1 MRI results of blinded chronic cerebrospinal venous insufficiency study in patients with multiple sclerosis, healthy controls and patients with other neurologic diseases P 318

R. Zivadinov, G. Cutter, K. Marr, M. Ramanathan, R.H.B. Benedict, M. Elfadil, N. Bergsland, C. Morgan, E. Carl, D. Hojnacki, E. Yeh, L. Willis, M. Cherneva, S. Hussein, J. Durfee, C. Kennedy, M. Dwyer, B. Weinstock-Guttman (Buffalo, Birmingham, US)

Also being presented is the genetics research now completed at BNAC (美國水牛城醫學中心的研究)

15:30 - 17:00 Genetics/transcriptomics 1 Associations of HLA DR*1501 status and chronic cerebrospinal venous insufficiency in multiple sclerosis P 265

B. Weinstock-Guttman, R. Zivadinov, G. Cutter, M. Tamano-Blanco, D. Badgett , K. Marr, E. Carl, M. Elfadil, C. Kennedy, M. Ramanathan (Buffalo, Birmingham, US)

Dr. Zamboni presents results from his endovascular treatment study-(義大利醫師桑伯尼的研究)

15:30 - 17:00 Therapy disease-modifying - Others 1 Endovascular treatment for chronic cerebrospinal venous insufficiency in multiple sclerosis. A longitudinal pilot study P 508

P. Zamboni, R. Galeotti, B. Weinstock-Guttman, G. Cutter, E. Menegatti, A.M. Malagoni, D. Hojnacki, M. Dwyer, N. Bergsland, M. Hiennen-Brown, A. Salter, C. Kennedy, I. Bartolomei, F. Salvi, R. Zamboni (Ferrara, IT; Buffalo, Birmingham, US; Bologna, IT)

On Friday, a negative study is being presented by another Italian team who found no CCSVI in CIS patients.

Friday, October 15, 2010 09:45 - 10:00 Platform presentation of selected abstracts I (Congress Hall) No evidence of chronic cerebrospinal venous insufficiency in clinically isolated syndrome suggestive of multiple sclerosis 81

C. Baracchini, P. Perini, M. Calabrese, F. Causin, F. Farina, F. Rinaldi, P. Gallo (Padua, IT)

Then Dr. Zivadinov will present on how the visibility of lower brain vasculature ties into CCSVI severity as shown by MRI

10:00 - 10:15 Platform presentation of selected abstracts I (Congress Hall) Presence and severity of chronic cerebrospinal venous insufficiency is related to lower brain parenchyma venous vasculature visibility on susceptibility-weighted imaging in patients with multiple sclerosis 82

R. Zivadinov, G. Poloni, C. Schirda, C. Magnano, E. Carl, N. Bergsland, D. Hojnacki, C. Kennedy, F. Parker, M. Dwyer, B. Weinstock-Guttman (Buffalo, US)

Dr. Simka's research on endovascular treatment of CCSVI will be presented(波蘭醫師Simka的手術觀察研究)

15:30 - 17:00 Therapy disease-modifying - Others 2 Safety and complications related to endovascular treatment for chronic cerebrospinal venous insufficiency in multiple sclerosis patients P 914

M. Simka, T. Ludyga, M. Kazibudzki, M. Hartel, M. Swierad, J. Piegza, P. Latacz, L. Sedlak, M. Tochowicz (Katowice, Zabrze, PL)

Dr. Zivadinov's research on utilizing MRV to visualize the jugular veins after angioplasty-

15:30 - 17:00 Imaging 2 Use of magnetic resonance venography for visualisation of the internal jugular veins in patients with multiple sclerosis diagnosed with chronic cerebrospinal venous insufficiency and treated with percutaneous angioplasty P 773

A. Lopez-Soriano, R. Zivadinov, R. Galeotti, D. Hojnacki, E. Menegatti, C. Schirda, A.M. Malagoni, K. Marr, C. Kennedy, I. Bartolomei, C. Magnano, F. Salvi, B. Weinstock-Guttman, P. Zamboni (Buffalo, US; Bologna, IT) 15:30 - 17:00 Clinical assessment tools 2

BNAC's correlation of CCSVI to MS(美國水牛城醫學中心的研究)

Clinical correlates of chronic cerebrospinal venous insufficiency in multiple sclerosis P 653

B. Weinstock-Guttman, G. Cutter, K. Marr, D. Hojnacki, M. Ramanathan, R.H.B. Benedict, C. Morgan, E.A. Yeh, E. Carl, C. Kennedy, J. Reuther, C. Brooks, M. Elfadil, M. Andrews, R. Zivadinov (Buffalo, Birmingham, US)

Dr. Simka's correlation of severity of CCSVI with severity of MS(波蘭醫師Simka的手術觀察研究)

15:30 - 17:00 MS symptoms 2 Correlation of localisation and severity of extracranial venous lesions with clinical status of multiple sclerosis P 641

M. Simka, T. Ludyga, M. Kazibudzki, A. Adamczyk-Ludyga, J. Wrobel, P. Latacz, J. Piegza, M. Swierad (Katowice, PL)

A Beirut study that says CCSVI does not cause MS

15:30 - 17:00 Pathology 2 Chronic cerebrospinal venous insufficiency is an unlikely cause of multiple sclerosis P 663

B. Yamout, A. Herlopian, Z. Issa, R.H. Habib, A. Fawaz, J. Salameh, H. Wadih, H. Awdeh, N. Muallem, R. Raad, A. Al-Kutoubi (Beirut, LB)

Dr. Zivadinov's study showing increase of iron in gray matter of MS/CCSVI (鐵離子的堆積)

15:30 - 17:00 Imaging 2 Multiple sclerosis patients with chronic cerebrospinal venous insufficiency present with increased iron concentration on susceptibility-weighted imaging in deep-grey matter P 774

R. Zivadinov, M. Heininen-Brown, C. Schirda, C. Magnano, D. Hojnacki, C. Kennedy, E. Carl, N. Bergsland, S. Hussein, M. Cherneva, L. Willis, M. Dwyer, B. Weinstock-Guttman (Buffalo, US)

And finally, the German neurological doppler study where they claim they found no CCSVI, but Dr. Zamboni says their results actually PROVE CCSVI.(德國觀察的現象)

15:30 - 17:00 Diagnosis & differential diagnosis 2 No evidence for cerebro-cervical venous congestion in patients with multiple sclerosis P 579

F. Doepp, F. Paul, J.M. Valdueza, K. Schmierer, S.J. Schreiber (Berlin, Bad Segeberg, DE; London, UK)

And of course, the pharmaceutical companies will be there, presenting all their positive findings, sponsoring lectures and discussions and hosting dinners and events. What fun!

I actually wish I could go, but it's too far away, and too much going on at home. I hope we can get some reports from attendees, and I promise to link to those and any other news that comes out of the conference. I really wish we could all be flies on the wall as Dr. Omar Khan "questions" Dr. Zamboni.

我很希望我能夠去, 只可惜太遠了. 希望與會者能夠把一些內容post出來.

ECTRIMS 2010: Gothenburg, 瑞典 · 13-16 October 2010

布魯克將赴保加利亞做靜脈擴張手術

Corner Brook man heading to Bulgaria for MS ‘Liberation Treatment’
布魯克10/30將赴保加利亞做靜脈擴張手術!
from The Western Star Staff Writer

CORNER BROOK A Corner Brook man says he’s heading for Destination Liberation.

Don Morey is going to Sofia, Bulgaria for treatment of his multiple sclerosis with the “Liberation Treatment.”

The procedure consists of putting stents in the veins of the neck to drain the blood from the brain properly. The work is done in a similar fashion to inserting a cardiac catheter.

將會放置支架在頸靜脈...

He was diagnosed with MS 6 1/2 years ago and the progress has been devastating. He walks with a walker.

6年半前被診斷出MS , 現在他需要助行器

It was only 10 years ago the certified carpenter was building himself a house.

Now he has courses in auto CAD and is doing drafting.

He’s positive the treatment will help improve his condition. He’s hopeful he’ll eventually be able to walk without a walker soon.

他樂觀的看待這個手術而且希望能夠再行走

“I wouldn’t travel half way around the world and let someone do something like this if I didn’t think it was going to be life-changing,” Morey said. “When I first read about Bulgaria, “I said what is this.

“Then I got online and started checking it out and checked on Google Earth. I told my mother they’re driving new cars, Audis and Porches. When people have a lifestyle like that, they expect good health care.”

I wouldn’t travel half way around the world and let someone do something like this if I didn’t think it was going to be life-changing. - Don Morey

Morey appreciates everything that’s being done to help him have the procedure devised by Dr. Paolo Zamboni of Italy.

He figures the surgery will cost between $16,000 and $18,000.

The province put $320,000 into a study of the procedure recently. On Sept. 13, Health Minister Jerome Kennedy said while government won’t fund the surgery, the province will follow patients that have had the veins in their necks modified.

“There’s hordes of people going every day to get it done,” Morey said. “They’re going to Bulgaria, Poland, Egypt, India and numerous spots in the (United) States.”

With 700,00 people in the U.S. with MS, he found it impossible to get into a clinic there.

He’s heading to Eastern Europe Oct. 30, and will have the procedure done in early November. “They’re probably second in the world in doing this procedure,” he said.

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附上一個讀者對此文章的回應

Auscursdad- October 10th, 2010 at 13:45:55

My cousin returned from Bulgaria today. She could feel her feet for the first time in years within 2 hours of the procedure! She also walked hours shopping the next day. She hadn't been able to work for the past year because of her inability to stand on her feet. Good luck with your procedure. I'm anxiously waiting a call for my appointment!

布魯克將赴保加利亞做靜脈擴張手術

CCSVI 靜脈擴張術全球現況

A new treatment for MS from The Irish Times - Monday, October 11, 2010

A chara, – Multiple sclerosis has been known as a venous problem since 1863. This, however, had not been proven until recently when an Italian doctor Paolo Zamboni investigated the venous possibilities connected to his wife’s MS. With modern diagnostic equipment like ultrasound and MRV he found that her jugular veins were narrowed restricting blood flow from her brain and causing reflux where the used blood flows backwards into the brain depositing iron which causes MS disability and various symptoms. It is now called CCSVI – chronic cerebrospinal venous insufficiency. Research indicates that about 90 per cent of MS sufferers have CCSVI.

MS最早在1863就有人提出可能為靜脈的問題, 然而一直到義大利醫師Paolo Zamboni的研究發表(2009)之後才首次真正被證明. 藉由超音波和MRV觀察到他太太的jugular veins具有窄化情形而限制了由腦部回流至心臟的血流量, 進而導致血液中的鐵籬子進一步堆積而造成肢障和各式各樣的症狀.

To date around the world about 4,000 MS sufferers have had the simple angioplasty procedure done on their jugular veins and almost all have confirmed improvement in symptoms and have no use for the ultra-expensive medicines normally prescribed for MS sufferers. Some of the results are almost miraculous, with some patients going to get the angioplasty in a wheelchair and being able to walk within weeks. The procedure is called the Liberation Treatment.

節至今日, 全球已經有約4000名MS患者已經進行了簡單的"靜脈擴張術"擴張了他們的頸靜脈. 也有諸多的證明顯示了其症狀有改善, 也不需要花費在昂貴的藥物上. 其中一些例子更是奇蹟, 坐輪椅去, 而手術後幾星期就能夠自行走路.

Neurologists and MS societies are paid huge amounts of money by the drug companies to prescribe and advertise all the MS medications. They know if the Liberation Treatment gets approval then all this money will stop.

Some neurologists also say that the Liberation Treatment is too dangerous. The facts are that around 2.5 million angioplasties are performed around the world annually for various venous or arterial problems.

目前血管擴張術全球一年中約實施250萬次之多, 主要用在靜脈和動脈的問題上, 是相當成熟的醫療技術.

As with all procedures there are risks. Of the approximately 4,000 Liberated people around the world, one has died because of an adverse reaction to the blood thinning medication required. So the risk is 1/4,000 and lessening daily. The MS medication Tysabri prescribed by neurologists has a 1/1,000 chance of killing you and they have no problem recommending this once you sign a disclaimer stating the neurologist or drug company is not responsible for your death if it happens. Tysabri costs the State in the region of €35,000 annually per patient. The Liberation Treatment costs around €7,000 to have done in many countries around the world and has now even started in Scotland after their difficult battle to get approval.

當然所有的手術皆有其風險, 就像所有的藥物皆有其副作用一樣, 風險約為1/4,000. 相較於Tysabri的風險1/1000為低. 而Tysabri用於每個病人每年所需的成本高達 35,000歐元. 和靜脈擴張術的成本7000歐元比較起來. 高了5倍...

In the region of €100,000,000 could be saved by the HSE every year in Ireland alone.

I and some of the MS sufferers of Ireland are hoping to persuade the authorities to approve the Liberation Treatment soon and give us back our minds and bodies.

我和在愛爾蘭的其中MS病友都希望能夠說服有關當局能批准這樣手術的盡快實施,還我們一個健全的心智和健全的身體!

My time is running out now because I have stopped taking Tysabri and the neurologists have absolutely nothing else to offer me.

It appears that CCSVI may be one of the many causes of so many, so-called neurological diseases. A connection to Parkinson’s and Alzheimer’s diseases is also being researched. – Is mise,

來自愛爾蘭MS病友的聲音
-------------------------------------------------------------

我閱讀到的其他風險參考值: 1/1000 (靜脈擴張術) 和Tysabri一樣....
所以 即使風險一樣, 為何不選擇靜脈擴張術?

CCSVI 靜脈擴張術全球現況

Goodyear receives MS ‘liberation treatment’

Goodyear receives MS ‘liberation treatment’

Perry Goodyear was scheduled to arrive in the United States over the weekend to receive the experimental ‘liberation treatment’ for MS. The 37-year-old Grand Bank resident, who was diagnosed with the disease in 2003, travelled to St. John’s Friday to give himself a chance to rest up before catching an early Saturday morning flight.
派瑞,37歲, 2003年被診斷出MS, 準備到美國 St. John’s Friday 接受靜脈擴張手術!

Falling into the Primary Progressive form of MS, which affects between 10 and 15 per cent of people with the disease, he requires a motorized scooter to get around and now has only 50 per cent function in one arm.
他需要一個電動車來代步, 現在他的手臂只剩下一半的功能是正常..

Since speaking with The Gazette in late August, he said the disease has further progressed to the point where he could no longer eat solid foods.
他說 他的病已經惡化到無法進食固體食物了!

He said participation would require several trips to Ontario for follow-up Doppler ultrasound tests. The province does not yet have that equipment.

閱讀更多:

Goodyear receives MS ‘liberation treatment’

Goodyear receives MS ‘liberation treatment’

希望第8位病友手術能夠順利完成

大家都期望著, 有另一個奇蹟和證明的發生..

是第8位嗎?

希望第8位病友手術能夠順利完成

病友的經驗分享

來看看 Gerry Peters的故事吧
遠赴墨西哥手術!!

Gerry Peters Pre-Treatment Video傑瑞CCSVI手術前

Gerry will be having the liberation treatment to treat CCSVI on August 9 in Los Cabos Mexico. This is his pre-treatment video describing his MS symptoms in detail. Gerry has a Liberation Blog where video and photos will be loaded during his time in Los Cabos.


平衡很差...

傑瑞CCSVI手術前-2

Gerry's Treatment Video 傑瑞CCSVI手術過程影像

胸腔靜脈和頸靜脈都擴張了!!

Gerry Peters Post CCSVI Treatment Video - Day 2 手術後2天

腳趾頭活動很靈敏, 走路超級順, 完美的平衡, 可以單腳站立,可以自由的站立和蹲下!
真是太棒了,恭喜傑瑞!!

想閱讀或知道更多?
請到 http://www.gerrypeters.com/hope
或到http://www.youtube.com/user/elpis1955

病友的經驗分享

中樞神經病變急性發作的緊急療法：血漿置換/透析術

類固醇注射療法的另一章

血漿置換術（plasmaphoresis）

血漿置換術是一種類似洗腎的原理，過程中您的血液會從導管中被抽出來流入一台機器內，機器會把你血液中的血漿和血球分離。因您的血漿中含有不正常的抗體或相關的免疫物質，我們會用一個袋子收集起來丟棄，然後利用機器協助將你的血球與其他人捐血的血漿混合後，再經由導管注回您的體內，這樣您體內的致病物質就會逐漸減少。


雙重過濾血漿透析術

利用分子量大小不同做有選擇性的分離，是一種省時、方便、易操作、無需大量補充液(病患不需要別人的血漿，減少不必要的感染)，而且併發症少，安全性高的新治療方式。
將病人的血漿經過血漿分離器，利用過濾、吸著或是沈澱、加溫的不同方式，將血液中不要的成分移走，再將剩下的血漿輸回病人身上。

血漿置換術主要應用在與免疫有關的神經病變與神經-肌肉聯合處的病變。以下舉兩種常見的應用來說明：
一、急性去髓鞘性神經病變：此類患者一開始的症狀以腳麻、手麻或手腳輕微無力為主，這些症狀會很快的往身體近端延伸，讓患者在一到兩星期內就會全身癱瘓無力，在此同時也會有很高比例的病人出現顏面神經麻痺的現象，若沒有及時施行血漿置換術，患者則幾乎不可避免的會呼吸衰竭。以往在沒有血漿置換術的年代，此類患者大多在三到四個星期後會達到病情的頂點，然後再經過二到三個星期才會逐漸好轉。血漿置換術大幅改變了這個疾病的病程，讓患者及早開始復健，大為減低日後殘障或其他後遺症的可能性。目前血漿置換術已經成為這類疾病的首選與必須的治療。
二、重症肌無力危症：重症肌無力最為人所知的症狀在於眼皮下垂與午後的全身無力症狀，此類疾病的病理機轉在於自體免疫的抗體攻擊突觸後的乙醯膽鹼接受體，使神經訊息無法正確傳到肌肉而造成症狀。在全身型的重症肌無力患者，如果因為感冒、身體其他的感染、合併其他內科疾病的情況下，就可能會進一步的造成呼吸肌的無力，此時病人一開始會有吸不到氣的感覺，接著就會出現喘的現象。此時如果再不緊急安排血漿置換與插管治療，則二氧化碳會很快的在身體中堆積，病人也會開始出現意識恍惚或甚至昏迷的情況。

血漿置換術除了上述兩個較危險的疾病外，在其他如多發性硬化症、慢性去髓鞘性神經病變及其他自體免疫病變造成的中樞神經病變等也佔有非常重要的治療角色，可說是神經內科用來對付相關疾病的重要武器之一。

其他適應症：
疾病名稱 證實治療有效的疾病
腎臟疾病 Goodpasture’s syndrome
（肺出血腎炎症候群）
紅斑性狼瘡腎炎

神經系統疾病 重症肌無力
多發性神經根炎
慢性發炎脫髓鞘
多發性神經病變
Refsum disease
Guilain – Barre syndrome

血液疾病 紫斑症(輸血，血栓性血小板減少引起)
Sickle cell disease
凝血因子抑制疾患
免疫系統疾病 紅斑性狼瘡
類風濕性關節炎
Cryoglobulinemia
腸骨系統及
皮膚系統 天疱瘡
肝臟疾病
猛爆性肝衰竭

據國內之醫學統計報告指出，所有血漿置換治療的有效率約為四成，其中神經性疾病的效果最好，約有九成。整體而言，血漿置換術是一種有療效、而且還算安全的 治療，但如同醫學上的其他治療方式般，仍有一些併發症會發生。最常發生的不良反應分別是：感覺異常（12.7%），畏寒（10.2%），胸痛 （5.9%），噁心（2.9%）及呼吸困難（2.0%）等。併發症中: 輕微症狀者佔23%，中度症狀者佔11.4%，重度症狀者佔1.6%，亦有少許因而死亡的病例報告。

血漿置換步驟

血漿置換術之流程為何？
1. 醫師會在您的鼠蹊部或頸部血管放置一條導管，插入的過程會有一點點痛，但醫師可能會在進針的位置，先注射少量的局部麻醉劑，以減輕您的疼痛。
2. 我們會將血漿置換機器推至病室內，由專業人員協助您進行血漿置換。
3. 於進行治療之前，醫師可能會依您的情況事先給予預防性抗過敏藥物，以降低您於血漿置換過程中可能發生過敏反應的機率。
4. 每次置換療程結束後，護理人員將會抽取少量血液進行檢查，如您出現血小板流失過多或低血鈣情形時，醫護人員會協助您補充血小板及鈣離子。
5. 血漿置換術通常需要每天、或每隔2至5天作一次，至於整個療程需要幾次的血漿置換術，則需視您罹患的疾病，由醫師來判斷。


主要風險和注意事項:

細菌感染，血栓，過敏現象，
需注意 血紅素 白蛋白指數 過低

（1） 立即的併發症：靜脈導管插入的地方可能會局部出血，只要局部加壓即可止血；另外，針孔處可能會有細菌侵入造成局部或全身性感染，這時就必須使用抗生素以殺菌。
（2） 血漿置換的過程：可能會導致疲勞、倦怠、血壓不穩定(過高或過低)，這可透過嚴密的監控與藥物來作校正。
（3） 與捐贈者的血漿產生過敏反應，可能的症狀包括畏寒、發燒、皮膚紅疹、嘴唇眼皮浮腫、支氣管收縮造成氣喘、甚至休克等症狀。所以在過程中，當您有上述的症狀時，請馬上告訴醫護人員，醫師會依據你過敏的情形使用抗過敏藥物。
（4） 因為過程中需要使用抗凝血劑，且血液中的血小板數目會減少，所以可能會有出血及血鈣較低的情形(如：嘴巴四周麻木，手腳抽筋，噁心，想吐)。
（5） 如同一般的輸血，雖然捐贈者的血漿已經過嚴格的篩檢，但是血漿置換術也有極微小的機會，會讓您感染到經由血液所傳染的疾病，例如：愛滋病與肝炎等。

中樞神經病變急性發作的緊急療法：血漿置換/透析術

病友的CCSVI經驗和故事整理

我把過去層出現在我BLOG有關國外病友CCSVI 靜脈血管窄化以及他們的經驗和故事或影片做了整理,放在

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病友的CCSVI經驗和故事的連結當中

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病友的CCSVI經驗和故事整理

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病友Vanessa的經驗

CCSVI手術前-1

My sister trying to eat , major spasms in both arms , has to lock everything to take a bite.
手有嚴重的痙欒現象

CCSVI手術前-2

Showing eye twitches which gives my sister blurred vision and has trouble to read
眼球也會抽動，因此無法閱讀..

CCSVI手術前-3

My sister trying to give me a hand , takes a lot of mental strength to try and keep it still , and that makes it spasm even more.
妹連和我握手都很困難~ 無法使他的手靜下來!

CCSVI手術前-4

My sister trying to move her feet , left foot slow movements and barely able to move her toes. Right foot almost no movement at all.
右腳幾乎無法移動, 左腳移動得很緩慢...


CCSVI手術後-1

This is my sister after the treatment on 15-7-2010 , she came out of surgery allready with much improved speech , she talked all day :) we only noticed later in the day she didn't have to search for words anymore.
7-15號手術後，說話改善很多,
Everything went perfectly the jugulars on both sides were opened to 100%
before she had less than 10% on her right side and less than 50% on her left.
first things we noticed right after surgery were , warm hands , and warmer feet , and her right foot responded to tickling (before she couldn't feel anything in her right leg and couldn't move it at all)
之前他德左頸靜脈窄化超過50%右頸靜脈窄化超過90%。術後他的腳對搔癢有反應了（之前完全沒有）

CCSVI手術後3星期-1

showing you the tickle response she now has ,
not only does she feel me tickling her leg pulls the foot away as a response.
she does't feel it as tickling yet but she does feel it she says.
雖然他感覺的不是癢，但是至少他有感覺到了

CCSVI手術後3星期-2

My sis gives me a hand , as you can see much better hand eye coordination.
他可以穩定的和我握手了~ 而且在視力(眼球不再顫抖)上有很大的進步

CCSVI手術後3星期-3

總整理：
three weeks after the operation , 2 days after the first check-up in hospital.

after 2,5 weeks both jugulars are still perfectly open , there were no defect's on the veins and blood can still flow freely as it should.
doctor told her she wont need the meds she got after the treatment.
next check-up is in october.

improvement's we noticed after 3 weeks.

-warm hands , and warmer feet. 手腳變溫暖
-she doesn't look as pale as she was b4 臉色變紅潤
-much improved mental state. (happy) 心裡狀態進步
-much improved vocal ability (can talk freely without having to search for words in her head) 說話變穩定，流利
-has normal bladder controll again (once every few hours , use to be once every few minutes , and she doesn't have to help push it out) 排尿變好了，可以控制（由數小時到數分鐘）
-dreams again.
-can feel it if something touches her right leg (right leg didn't have any feeling in it b4 the op)
-better hand-eye coordination.
-less spasms , and not as wild as b4.(she can't eat much more easy and can give someone a hand)痙欒變少了
-she doesn't feel cold all of the time.
- is more awake (less tired) 較少疲勞感

amazing how much she improved in just 3 short weeks.
3星期就有如此巨大的改變..
doctor said it'll take about 6-8 months to see how far she could improve.

恭喜凡妮紗!! 獲得重生！真為他感到高興!!

想知道更多?
請至http://www.youtube.com/user/diekale2019
可以留言和詢問喔

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