網誌文章搜尋建議

給多發性硬化症MS病友和親友的建議:
如要搜尋站內相關文章可多利用
"搜尋此網誌的文章內容"的功能,這樣就可以快速的找到你想要得資訊而不需要從第一篇開始看了.
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

推薦頻道:Gimmy a break

2010年5月30日 星期日

單純的來看靜脈血管窄化的影響

2星期之前,我曾經針對榮總胡醫師過去在超音波診斷顱內血管(動/靜脈)的貢獻做了相關搜尋,發現其實榮總團隊對於"腦血管阻塞引起的中風(stroke)"頗有一番成果,不論是檢驗部份或者是手術部份。

其中,針對搜尋到的結果中(各位可以點選這個連結分別去看相關的文章),特別是 "腦血管阻塞引起的中風(stroke)" 的症狀部份,似乎有些存在於我自己本身的症狀內,同時這些症狀與MS某些的症狀也相同。我認為因為同屬於中樞神經組織壞死或病變或發炎所引起的症狀均相同所致
只是該資料多屬於動脈阻塞的部份所引起。

其中一份資料如下提到:

腦中風主要分阻塞性出血性兩種

由於腦中風有前述「阻塞性腦中風」及「出血性腦中風」兩種,發病的過程及症狀不盡相同。胡漢華分述如下:

阻塞性腦中風(又稱為缺血性腦中風)只要有下列三類:

1.動脈硬化阻塞性中風-例如頸動脈、脊椎動 脈等大血管或分支因為動脈硬化而阻塞。

2.腦血管栓塞-血管本身沒問題,但是心臟或頸動脈的近端有雜質,流到腦中把血管塞住而造成症狀。

3.小洞中風-和腦出血有很大關係,小血管壁因高血壓而變得又厚又脆,甚至有點像小血管瘤,它可能被塞住或破裂。如果被塞住會形成小小梗塞,看起來便一個 洞一個洞。因為範圍較小,雖不致造成死亡,卻可能導致殘障、半身不遂,甚至癡呆症。在東方人身上最常見。

事實上,腦出血機率不太多,反而腦血管梗塞出現比例高一些

而現在發現的頸靜脈Jugular vein血管窄化或阻塞 (Venous Stenosis) 相同的也會造成腦部的缺血或缺氧,動脈和靜脈本屬於同一個流動系統,任何一支流只要阻塞或窄化,就一定會引起其他的血管流量增加和壓力上升。 所以中風的機率也就相對變大了!

而且另外其中一份資料如 下提到:

、腦中風的症狀

腦中風所造成的腦神經缺損症狀非常多樣化,在不同部位的腦部損傷而有不同的臨床表現。除了大家常見的半邊身體癱瘓半邊身體感覺麻木、嘴角歪斜、說話不清楚之外,還包括了忽然發生的意識改變、智力下降、視力變差視野缺損複視耳聾、空間、定向力不足、思考減退、遲緩以及走路搖晃
半側(左或右)急性肢體癱瘓無力麻木突發性講話障礙口齒不清等等徵狀,嚴重的甚至會 產生重度昏迷或者是呼吸困難的情形。因此,只要遇到忽然發生有以上所提的腦神經缺失徵狀,就有可能是腦中風的情形。

小中風:頭暈目眩、手腳麻痺無力、眼睛看不清楚、說話口齒不清,但是症狀一會兒便消失,千萬別輕忽。醫師表示,這可能是俗稱「小中風」的暫時性腦缺血。

我們可以發現這些症狀與MS某些的症狀也相同。我認為因為同屬於中樞神經組織壞死或病變 或發炎所引起的症狀均相同所致

附上胡醫師有關於超音波檢驗靜脈血管的論文

*Chung CP, Hsu HY, Chao AC, Hu HH:Re:Detection of intracranial venous reflux in transient global amnesia--Ultrasound study.Neurology.2007.68(2):163

*Chung CP, Hsu HY, Chao AC, Sheng WY, Hu HH:Transient global amnesia: cerebral venous outflow impairment- insight from the abnormal flow patterns of internal jugular vein.Ultrasound in Medicine and Biology.2007

*Chung CP, Hsu HY, Sheng WY, Hu HH:Flow volume in the jugular vein and related hemodynamics in the braches of the jugular vein.Ultrasound in Medicine and Biology.2007.33(4):500-505

* Hsu HY, Chen YY, Yang FY, Chung CP, Sheng WY, Yen MY, Hu HH* :Reflux of jugular and retrobulbar venous flow in transient monocular blindness.Annals of neurology.2007

也附上榮總對於腦血管檢驗方式的詳細資料如下:

腦血管疾病的輔助性檢查,如杜普勒超音波血流檢查(Doppler ultrasound blood flow studies),可顯示大血管,包括頸動脈﹙carotid artery﹚與基底脊椎動脈﹙basilar and vertebral arteries﹚,的動脈硬化斑塊(atheromatous plaques)與狹窄。血管攝影(angiography),可以更精確地找出大血管的狹窄或阻塞、動脈瘤、動靜脈畸型、及其他如動脈炎等血管疾病。除 此之外,磁振血管攝影(magnetic resonance angiography, MRA) 與磁振靜脈攝影 (MRV),可用來檢視顱內的大動脈與大靜脈,並且沒有輻射線,安全性較高;但對較小的血管,準確度不如血管攝影。

北榮腦中風小組待命醫師都是資深神經內科、神經外 科與神經放射科主治醫師,團隊高度整合、氣氛和諧,「我們是全台灣協調性最好的腦中風中心,」而神經放射科在1985年完成台灣第一例頸動脈血管擴張術,治療嚴重頸動脈狹窄。
神經放射專科的專業徹底被看見

參與完成台灣第一例頸動脈血管擴張術,治療嚴重頸動脈狹窄的鄧木火主任說,多年前,台灣醫療界已經將支架應用在身體其他部位,但頸動脈部位還沒人做,北榮 放射線科透過參加國外相關課程與邀請國外專家來台指導,慢慢發展研究,終於挑戰成功。

「使用支架治療頸動脈狹窄、放射線治療在其他醫學中心多由心臟科做,但我們認為放射科更適合做,因為放射科最熟悉腦部血管分布,這也是中風病人的特性,」 胡漢華剖析,並不是血管有點阻塞就要治療,須仰賴團隊評估病人將來中風的機率及現在接受手術的風險,如果單由心臟科負責,未必了解中風的自然過程。


所以說了一大堆,重點是:

1. 若只要發現顱內靜脈血管窄化或阻塞(Venous Stenosis),就有可能增加中風的機會!

2. 所以既然發現了這個現象,就該立刻處理並且解決這個問題!以免進一步造成悲劇的發生!

3. 既然北榮團隊在1985年就能夠完成第一次頸動脈的血管擴張手術,我想對於頸靜脈應該不是很難的事!

4. 若MS的病人當中真的有此一情形存在,那無疑是雪上加霜(多發性硬化症+潛在中風)!禍不單行!更需要解決這個潛在的問題以避免MS病患步入無法復原的道路。

胡醫師,北榮團隊I believe in you! 我相信您和北榮團隊一定能夠解決顱內靜脈血管窄化或阻塞(Venous Stenosis)的問題的!
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2010年5月28日 星期五

重生的MS患者再加1"Chris Alkenbrack"

Treatment liberating for MS sufferer - Nova Scotia News - TheChronicleHerald.ca

影片請見此,有病患手術前後的影片(差異真的很明顯)

又一位在5/18號做完 Liberation treatment 的MS病患的分享


Treatment liberating for MS sufferer
Valley man who travelled to Poland for experimental liberation therapy says his health improved immediately, dramatically

Chris Alkenbrack walked down the driveway, a leash in one hand and a neon green cane in the other.

A tiny pug dog at the end of the leash jumped up in friendly fashion to greet a visitor.

Alkenbrack was just back from a walk along the quiet roads of Forest Hill, a hamlet nestled on South Mountain near Wolfville.

He soon had a pot of coffee brewing and kept up a lively conversation as he moved around the kitchen of the rustic bungalow he and wife moved into when they came to Nova Scotia from Ontario in 2006.

Two weeks ago, he said, this kind of mobility would have been impossible.

Diagnosed with multiple sclerosis in 1992, Alkenbrack’s disease had progressed to the point where two canes and a wheelchair were necessary for him just to get through the day.

"Before, when I was walking with my canes, the minute I would lift up my head, the room would spin," said Alkenbrack, 42, a former school principal.

He recently underwent a controversial procedure known as liberation therapy in a clinic in Poland. Liberation therapy is an angioplasty type of surgery, in which a balloon-catheter is used to widen blocked veins.

It’s controversial because the procedure has been touted as an extremely effective treatment for MS, even though medical trials have not been done to verify the claims.

Alkenbrack agrees more research must be done but for him, the evidence is clear.

"I’ve stepped back in time five or six years, and that’s significant," he said.

Over the past several years, his MS developed from "relapsing, remitting" type, when symptoms such as double vision and fatigue would come and go, to secondary progressive.

過去幾年來,他的反覆發作型MS已經轉變第2種退化型MS(這才是大家需要擔心的部份)

"I had more and more lesions on my brain," he explained. "It’s a really slow progression downhill."

When the side-effects of his medication, which most recently included chemotherapy, began to adversely affect his heart, Alkenbrack had enough last August.

"My wife and I discussed it and I said, ‘I know what MS can do and I can accept that, but I still want to be alive to see my grandchildren someday,’ so I stopped."

After hearing of liberation therapy in the news and through Facebook contacts, they didn’t hesitate to cash in $15,000 in RRSPs. The money paid for travel, accommodations and all medical work at a clinic in Katowice, Poland.

The improvement after his half-hour surgery on May 18 was immediate and dramatic, he said.

他說:5/18號做完Liberation treatment後有了重大的改變!!

After he and his wife returned from Poland, they picked up his 13-year-old daughter at the airport. She had been in Quebec on a school band trip during that time.

"I was walking with my cane with my wife, at a pretty good clip," he recounted. "My daughter recognized my wife; she didn’t even know it was me. When she realized it was me, she came running to me, threw herself in my arms and cried like a baby. She said, ‘Dad, I’m so happy for you.’ "

Under the new theory, advanced by the Italian vascular surgeon Paolo Zamboni, MS is caused by something called chronic cerebrospinal venous insufficiency, or CCSVI, which leads to blood with too much iron being diverted to the brain because of narrow veins.

Zamboni’s theory challenges the long-held belief that multiple sclerosis is an autoimmune disease, caused by the immune system attacking the myelin sheath that covers nerve tissue.

Groups such as the Multiple Sclerosis Society have urged MS patients to be cautious about putting life savings into travelling to countries such as Poland, Bulgaria and Kuwait that offer the procedure.

Maureen MacDonald, Nova Scotia’s health minister, has said the province needs to be sure the risks and the benefits of the treatment are clearly established.

"It’s still a very experimental therapy that requires more research," she told the legislature in early May, when Alkenbrack and others gathered in Halifax to call on the province to provide the treatment.

"We need further research to determine what the impact of this treatment will be."

But Alkenbrack points out that even if liberation therapy simply halts the progression of MS for some people, it will be worth it.

"There are over 3,000 people in Nova Scotia with MS, about 30~40 % on disability," he said. "Can you imagine the savings if this just worked for just 30 per cent of them?"


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來自加拿大一段更令人感動的影片

一段更令人感動的影片


附上一段觀看過的人的註解:
An outstanding video.
Our logic is irrefutable.
Why deny us this treatment?
This makes no sense.
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史丹佛大學 Dr. Michael Dake 對於CCSVI和MS的看法

附上史丹佛大學 Dr. Michael Dake 對於CCSVI和MS的看法,供給病人以及醫師們做參考

第一段


第2段


第3段


http://www.blockedveinsmsresearchgroup.com
可至上述網站瞭解 並且Dr. Michael Dake會更新他的研究結果
Dr. Dake gives update on where they are with research.
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2010年5月27日 星期四

全球組織MS Society 在英國舉行了CCSVI 線上meeting

MS Society 2010 MS-CCSVI-UK meeting

各位請透過以下連結 直接在網路上見證這個討論
http://www.voiceprompt.co.uk/mssociety/ccsvi/#

Click " view" to view the complete archive of the meeting.


內有多位MS病患的現身說法以及目前英國採取針對CCSVI的情形研究計畫
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又一位MS病人重獲新生!!

Val Hoenecke said she was virtually bedridden with MS earlier this year, but now she feels great after having an operation to open her neck veins. (CBC)

A Rosetown, Sask., woman says she feels "150 per cent better" after receiving a much publicized, but controversial, treatment for her multiple sclerosis.

"I'm a different person today than I was four weeks ago," said Val Hoenecke, a math teacher from the town southwest of Saskatoon who went to Poland last month for an operation to have veins in her neck unblocked.

Val Hoenecke說:去波蘭靜脈擴張之後,人生截然不同。以前幾乎是臥床不起的。

"I have nothing but energy, when all I could do [before] was stay in bed."

Hoenecke was one of about 20 people who met in Regina Tuesday night to talk about a treatment pioneered by Italian surgeon Paolo Zamboni for a condition he calls chronic cerebrospinal venous insufficiency or CCSVI.

As she flitted around from table to table talking to people at the event, Hoenecke showed no outward sign she has MS, a disease of the nervous system that can cause severe physical impairment and affects some 3,000 people in Saskatchewan.

在連結的右上角的影片當中顯示:Hoenecke能夠較自如的在桌子和桌子間移動,沒有很明顯的Ms人的症狀

For years, many scientists have described MS as an autoimmune disease, with drug therapy the standard treatment.

However, Zamboni believes MS is caused by blocked veins in the neck and has pioneered a novel treatment where angioplasty is used to open up the veins to help blood flow more easily.

MS patients around Canada have been clamouring for the treatment, but in most cases, neither the ultrasound used to diagnose the condition or the procedure itself are covered by provincial health insurance.

Some doctors say Zamboni's theories haven't been properly tested, and they're worried MS patients are moving too fast to get the operation.

People like Hoenecke have been traveling out of country and spending their savings to get the operation, which can cost $10,000 or more.

Hoenecke said she has no regrets after receiving her treatment on April 28.

"I have no pain now," she said. "I feel 150 per cent, and I can't even give you proper words to tell you how I feel."

Hoenecke說: 我現在感覺不到任合痛苦了我一點也不後悔做了這個手術(4/28)我覺得我感到150%的好!!

Lori Lumax, who has MS, writes about the procedure online and planned the event for patients Tuesday night, said it's been a long time since people have had this much hope.

"Since I've started this — we'll call it this chase — I've discovered that the people are very smart, very educated and very active," she said, "considering that many of them can hardly do the things they normally would do."

Lumax said she wants to continue pushing the message and rallying support for the procedure, so people searching for information know they're not alone.


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2010年5月24日 星期一

當罕見疾病遇到救星

罕見疾病之所以罕見,是因為該病沒有治療方式可以完全治癒,輕則可稍獲得控制,重則必須眼睜睜的看見這個生命受盡折磨。

目前在台灣,政府公告的罕見疾病目前211種,全台共有近6,000個罕見疾病家庭,70%以上的罕見疾病尚無積極治療方法。罕見疾病藥物由於治療藥物與 特殊營養品研發製造需要大量經費,但是使用人數過少,研發經費龐大,廠商在利潤的考慮下,往往不願投入開發、製造或引進。幸運獲得有效藥物治療的罕見疾病患者,可謂少之又少。所以願意長期投入研發工作的人與團隊,更是罕見!

同屬罕病的我曾參加罕病活動,認識了一些罕病的朋友,心中無限感慨,但同時也看到了人性堅強的一面。

醫學天天在進步,每天都有新的發現,所以無論得到什麼病,只要讓身體撐到救星出現的時候就有機會,就有希望!

而現在,MS多發性硬化症出現了一道曙光,雖不是藥物,而是一種手術,雖然成效如何未完全被瞭解,但是只要能有機會解決一種罕見疾病,何不去嘗試呢?就像許多嘗試過不同藥物的病人一樣。

愛的代價有多大?
需要付出多少才能拯救罕病病患的寶貴生命


一部改編自台灣的中央研究院生物醫學科學研究所所長陳垣崇院士和他的醫學團隊研發罕見疾病龐貝氏症解藥的電影--「愛的代價」,將於5月21日在台灣由得利影視代理上市發行。電影不僅描述罕見疾病家庭在面對罕見疾病的各種困境時不放棄的勇氣與決心,更帶領觀眾瞭解罕見疾病藥物研發的不易與艱辛。

看電影時幾度熱淚盈眶。《愛的代價》說的不只是一個罕見疾病新藥開發的故事,它還是一個關於愛,關於人不屈服於命運的故事
——侯文詠

看了這部電影之後我們就會相信,只要努力,只要還存著一絲希望,我們的孩子都會在不知道哪一個時刻,出現一個像陳博士這樣 的一個天使。
-----于美人

愛的代價 邀您一塊見證生命奇蹟

「愛的代價」Extraordinary Measures在台灣並無公開上映計畫,僅由得利影視獨家代理發行DVD,為了讓更多人共同見證罕見的生命奇蹟,罕見疾病基金會在得利影視公司與威秀影 城大力支持,除了記者會當天的首映會外,更在5月24日晚間及5月29日上午於威秀影城進行兩場特映會,以嘉惠更多的罕見疾病病友與相關領域的專業人員。

詳見:http://www.tfrd.org.tw/news/morenew.php?nid=1130&PHPSESSID=1843fce6770a4040ff95da1ce8f3f4fb
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MS人共同的希望

這兩個影片訴說著MS人共同的希望,無論他們身處哪個國家,他們都應當得到這樣的治療方式。

請注意影片的字幕,也請傾聽歌曲的歌詞。

請對照以下的歌詞大聲的唱吧!!

Somewhere there's a river
Looking for a stream
Somewhere there's a dreamer
Looking for a dream
Somewhere there's a drifter
Trying to find his way
Somewhere someone's waiting
To hear somebody say
Chorus

I believe in you
I can't even count the ways that
I believe in you
And all i want to do is help you to
Believe in you

Somewhere there's an angel
Trying to earn his wings
Somewhere there's a silent voice
Learning how to sing
Some of us can't move ahead
We're paralyzed with fear
And everybody's listening
'cause we all need to hear
Chorus

I will hold you up
I will help you stand
I will comfort you when you need a friend
I will be the voice that's calling out

I believe in you
I can't even count the ways that
I believe in you
And all i want to do is show you
I believe in you
And there are just so many ways that
I believe in you
Baby, what else can i do but believe in you - believe in you
All i want to know is you believe - believe in you
那裡有條河流, 他在尋找他的小溪,
那裡有個夢想家, 他在尋找他的夢,
那裡有位流浪者, 正式著再找出他的路,
那裡有人在等待, 等待著有人說,
一起唱~
我相信你, 不論怎樣, 我全然相信你
而我所想要做的事情,就是幫助你, 相信你自己
那裡有位天使 , 為了她的雙翅而努力,
那裡有個寂靜的聲音, 正學著怎樣歌唱,
我們有些人無法向前走, 因為害怕而感到無力,
現在所有的人仔細聽著, 因為我們都需要聽見,
一起唱~
我會抱緊你
我會幫你站
當你需要朋友時候, 我會讓你感到安心,
我可以當你的聲音, 大聲的喊出去,
我相信你, 不論怎樣, 我全然相信你
而我所想要做的事情, 就是告訴你, 我相信你
然而就是有那麼多的方法, 我相信你.
寶貝, 除了相信你我還能做什麼 - 全然的相信你
我只想知道你相信 - 我相信你

當我真正知道了全部的歌詞,我更激動了!(感謝Tobey能把歌詞post出來並且翻譯!)



看了這兩個影片之後,我不禁掉淚,因為只有親身經歷的人才能體會!

正因如此才更會對這兩個影片非常激動!

試著去體會著MS人曾經或現在受的痛楚,包含他們的家人,朋友,對於一個影響如此久的疾病在難得的2009年11月綻露曙光!

我們還要再繼續等待嗎?950人(台灣) 和 2500000人(全球) 的等待

CCSVI 已是醫學上熟知的現象,而氣球血管擴張術也已經行之有年!

醫者,懸壺濟世,古老的形容詞。

會在現今這個世界重現!
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續-國外病友Karla Tuck 手術後復原的情形(靜脈擴張術對於行走能力的改善)

附上原文

Heels! Heels! Heels! Oh yea!!!

I guess you know what I'm going to say. Today I wore 3 inch wedge heels!!! No staggering, no falling over, no dragging my foot, no going over on my ankle. I just walked : ))
I was able to stand for a longer period of time as well. Yes this is a big deal to the females who suffer from MS and are unable to wear them so this is a huge deal for me today!
今天我穿著3吋高的鞋子,走起路來不會跌跌撞撞,不會跌倒,不會拖著我的鞋子,也不會踢到我的腳踝。

SUCCESS follows the Liberation Procedure and I still can't believe with all the amazing stories out there that Canada still chooses to ignore us. I'm still disgusted with my country. It was my son's Final parade for Army Cadets that I went to today and found it hard to stand for our national anthem not because of my legs but because they lack the ability to help their fellow Canadians. I still wonder how they sleep at night know the suffering that is happening, yet they do!! Makes me sick!
對於加拿大政府無視於這項手術對於MS病患的幫助讓我對這個國家產生了厭惡。

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2010年5月23日 星期日

國外病友Karla Tuck 手術後復原的情形(靜脈擴張術對於行走能力的改善)

手術後的走路情形,已經不再跌跌撞撞/踉踉蹌蹌 的了!

Right after the procedure I could walk like this. It happened that fast :) This is 22 days post op and I can still walk. Not Placebo!!!!
才22天而已,我就可以這樣子走路了,這絕對不是安慰劑!
(有其他醫師認為此種手術只是安慰的效果,但是由病人臨床的反應和表現看來完全推翻了這種說法..)
I didn't get around to doing this video....so this is me today walking unassisted in a park, on uneven ground. I'm still experiencing tightness and pain in my lower leg and at the end of this walk my upper left thigh was paining as well. I did have to sit and rest on the park benches a couple of times. Not for very long though.
我能夠不用輔助物就可以在崎嶇的路面上行走,行走的時間明顯的變長了!

The last time I came here was last year and it was a slow go and had to stop many times to rest. I also had to hold on to my husbands arm for support because my leg just didnt want to work for me. Then it wasn't a walk in the park.....haha now it is! : )
去年我來這兒的時候,我走得很慢而且必須常常停下來休息,我必須扶著抓著我丈夫的手因為我的腿完全不聽我使喚。而現在,不會了!

You have so much more freedom when you don' have to rely on others to walk and when you don't get exhausted after walking a few feet. Life is good.

附上影片1連結

附上影片2連結
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2010年5月19日 星期三

如果你的人生可以重來~

一個簡單不過也嚴肅不過的問題

如果你的人生可以重來,那麼你會選擇怎麼樣的生活方式呢?

如果你的人生可以重來,你的人生目標是否會改變?

如果我的人生可以重來,我只想要和平凡人一樣,過個平凡的生活!

如果我的人生可以重來,我這一生唯一的願望就是:一生都健康,和諧!

如果你的人生真的可以重來,請不要輕易的讓這個機會從你手中溜走!

如果我的人生可以重來,我將窮盡我最大的努力,成為一個平凡人,過個平凡的生活,接下來的生活都健康,和諧!

如果我的人生可以重來,即使像AVATAR的樣子,我也願意。

如果我的人生可以因為一個手術而重來,I will say: This is great!


就像影片中的 Jack Soli 一樣, 那你的選擇呢

http://www.youtube.com/watch?v=dHRIVioj8l0&feature=related
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2010年5月18日 星期二

免費諮詢資源Liberation Treatment, CCSVI Procedure,CCSVI Screening,Venous Angioplasty

Liberation Treatment India,CCSVI Procedure,CCSVI Screening,Venous Angioplasty

印度提供了一個免費諮詢的網站供大家針對CCSVI還有靜脈擴張術 做進一步的資詢
直接點選上面連結即可。
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更多靜脈窄化和靜脈擴張術的新聞 fromCBC news

CBC - Calgary - CCSVI

國外病友 Calgary的經驗

國外病友Ducan Thornton talks about his trip (Ducan的經驗)

CBC - Ducan Thornton talks about his trip - CCSVI e Sclerosi Multipla - 2010-03-18
Author embark on hopeful trip - Ducan thornton talks about his trip to Poland for an experimental treatment he hopes will change his life and health.


國外病友Ottawa的經驗: man with multiple sclerosis cashing in his retirement savings to go to Poland for controversial. He hopes will relieve his symptoms.

OttawaDucan為兄弟
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專訪Dr.Zsmboni :靜脈窄化導致MS原因的發現者


Interview wit Dr. Zamboni - 14/04/2010 - about CCSVI from CBC news

後段有病人的心聲,It's really expired!
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feature on CCSVI BBC news


11 February 2010.
Features a brief interview with Dr Doug Brown, Biomedical Research Manager from the MS Society.

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2010年5月17日 星期一

罕見多發性硬化症 她高二發病如中風…

罕見多發性硬化症 她高二發病如中風…中時電子報 2010-05-17 中國時報 【張翠芬/台北報導】
 ▲多發性硬化症患者鈕小姐現身分享,期許社會給予更大包容、機會,並能重新回到陽光下。(王遠茂攝)

 ▲多發性硬化症患者鈕小姐現身分享,期許社會給予更大包容、機會,並能重新回到陽光下。(王遠茂攝)

 台灣現有九百五十多位多發性硬化症罕病患者,由於健保規定病患須發病兩次才能申請重大傷病卡,多發性硬化症協會十六日呼籲,應簡化審核程序,因為第一次發病的病友就應積極接受治療,才有機 會再次站起回歸社會。

 這些病友因神經系統病變,出現類似中風手腳無力症狀,病人多處於廿幾歲花樣年華。

 六十九年次的鈕小姐昨天由母親陪同出席病友會,她高中曾是景美女中樂儀隊,高二時發病,媽媽發現她像中風一樣,拖著腳在爬樓梯,醫 院診斷是多發性硬化症,她中斷學業,封閉自我心靈,甚至得了憂鬱症

 鈕小姐病情一度嚴重到上廁所、洗澡無法自理,還好媽媽不放棄,鼓勵她到景文科大假日進修班,支持她踏出家門,透過身心障礙者就業方案,成 為中科院約聘人員。

 現在,紐小姐一周要自己打三次干擾素(Rebif),身上處處都是結痂硬塊,常因重心不穩摔倒,視野受限、動作思考較遲緩,她努力的獨立生活,但媽媽擔心約聘人員今年底合約到期, 是否會續聘?

 台北榮總周邊神經科主任蔡清標表示,多發性硬化症是中樞神經系統的髓鞘病變,神經髓鞘如同電線外層的絕緣皮,一旦發生病變,就像電線破損 漏電無法正常運作。患者多在廿至四十歲發病,女性與男性比例約為五比一。

 蔡清標說,多發性硬化症的症狀,從缺乏平衡、視力模糊、口齒不清、吞嚥困難、記性變差、頻尿漏尿,到癱瘓甚至死亡等,所以有「千面女郎」 的外號。目前醫學上只要一次發作,加上核磁共振即可確診,越早治療,病情控制得越好。

 中華民國多發性硬化症協會理事長雷蕾說,估計全台灣應該有一千五百多個患者,但只有九百五十多人領有健保重大傷病卡,還有六百人未確診或 未二度發病無法領卡

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

若一個小小台灣就有將近1500位MS病患,看來靜脈擴張手術有可能會是這些病患的救星!目前醫師 (除神經內科外) 對於此病並不熟悉,若要第一次就確診的確有其困難,而病歷無法流通造成需要在同一醫師診斷下發病兩次,才可確診對於病人實在是很嚴重的打擊,兩次發病很有可能就在也無法站起來了。更遑論這種病發生在家庭中的經濟支柱身上!

雖在台灣罕見,但全世界的MS病患已經高達250萬人以上,而且北美地區正以每週200人的速度增加中。

為了避免增加更多的社會成本,國外於去年底所提出的靜脈擴張手術可能會是MS病人的希望!!
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2010年5月16日 星期日

另一位國外病友Lucky Lady 手術過程分享

另一位國外病友Lucky Lady 手術過程分享

Where do I begin? Yesterday(2010/3/10) I was the first person to have Dr. Zamboni’s Liberation Treatment performed at Georgetown University Hospital.
Lucky Lady是第一個在Georgetown University Hospital進行氣球擴張手術的病人

We (my wonderful husband and I) arrived at 6:30am. Went up to the cardiac cath lab holding room, and had to explain to the wonderful nurses exactly why we were there. I don’t think that they believed me when I told them that we were going to be making history that day. I guess they hear that a lot, or just thought I was a crazy lady.

Then Dr. Neville called them in for a meeting. They came back all excited! That’s right, ladies. I don’t lie!

They wheeled me into the cath lab and I met Dr. Laredo. He is another vascular surgeon at G-town who was observing Dr. Neville. In addition to the techs and nurses, there was also an Interventional Radiologist from NIH there to observe. Interesting, huh?

The nurses gave me Fentanyl and Versed to make me a little loopy (yeah, yeah, I know you all think I’m already a little loopy, but they don’t know me that well!). Dr. N. numbed the insertion site in my groin, and we were off! It was hard to pay attention, cause the drugs wanted me to just close my eyes and lay there. But I wanted to hear everything that was going on! (同樣的導管由腹股溝進入)

At the point when he first saw the stenosis in my right internal jugular he said, “I’m excited! And I don’t get excited.”

Someone else in the room said, “Yeah, he doesn’t get excited.”

To which I (still loopy, but, being 40 and all, felt the need to acknowledge my ability to excite a man) replied, “I’m flattered!”

The right IJV was 95% stenosed (narrowed), and I definitely felt the balloon being inflated on that side. It didn’t hurt, but it was an odd sensation.
我的右頸靜脈95%窄化,我能夠感覺到氣球的擴張,我不覺得痛,只是怪怪的感覺。

Here's the "before" picture of the right side. It's supposed to be a thick black line all the way from the top to the bottom, but notice that about 2/3 of the way down, it just stops. That's where the stenosis is! The greyish area below is empty vein where the blood/dye should be flowing.

下面是手術前的血液流動狀況:可以清楚的看到阻塞在某一點。

Here's the "after" picture, just as the blood/dye was beginning to flow through the open vein. So cool, huh?!?

下面是手術後的血液流動狀況:可以清楚的看到明顯的不同。

The left side was 75% stenosed, and I didn’t feel the ballooning at all.
我的左頸靜脈75%窄化
He looked at the azygos vein and he thought he saw a small amount of blood reflux. He looked from many different angles, but couldn’t find any obvious causes, so he left it alone. Then they were done!
醫師同時檢查了 azygos vein(胸腔靜脈),醫師看到了有些小部份的血液回流,但是從很多角度觀察並沒有很明顯的阻塞,所以醫師沒有對azygos vein(胸腔靜脈)作擴張
I went back to the holding room, and within 15 minutes my neurologist was there with a big grin on his face. Dr. N. had called him right after it was done and gave him the glowing report. He was practically giddy!

I had to lay flat for the first hour so that the insertion site could clot properly. The next hour I was at 30 degrees, then finally I was able to sit all the way up. Most importantly I was able to go do what a girl’s got to do to get rid of all of that damn saline they had been pumping into me!
手術完後,平躺約一個小時,等待傷口癒合,之後第2個小時斜躺30度,然後才站起來!

My brother showed up with enough yummy food from Balducci’s to feed us and all of the nurses, too. Thanks, bro!

We lounged around the holding room until about 5:00 waiting to be moved to a regular room. At that time it was determined that there were still no beds available for me, so they sent us home!!!!!

We signed all the of the papers, and high-tailed it home, arriving a few minutes before the kids got home from dinner out with my mom. Thanks, Mom! Lots of hugs and kisses, and then the exhaustion set in.

I am officially on Plavix for the next two years, or until the doctors decide to stop. We’re making history here, people! Things are going to change as more info comes out.

I have a follow up appointment with Dr. Neville next Friday 3/12. I will also have an ultrasound to confirm that my blood is only flowing DOWN my veins, not up.
隔兩天後進一步作超音波檢查確認血液沒有回流或阻塞的情況

So... Everything went perfectly yesterday. I could not have scripted it better.

The only immediate improvement that I have noticed is warm hands and feet! This may not seem like that big a deal to you regular people, but for a girl who has spent the last million years with constantly cold extremities, this is HUGE!

Other improvements that may show up soon include: less fatigue, less sensitivity to heat, and less "cognitive fog". Or maybe not. Other improvements may take longer. We will just have to wait and see. I am a patient woman. It took me 20 years to get here, and I am willing to work for the next 20 to get back whatever I can!
我花了20年才等到今天獲得好轉!

所以,簡單的小結論,當確認動手術了,就要同時針對兩側的頸靜脈Internal Jugular Vein作擴張,而且最好同時檢查 azygos vein(胸腔靜脈) 是否有窄化,若有就可以同時作擴張!

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關於手術細部資訊,感謝國外病友的提供

對於整個手術過程,經由詢問了國外病友Karla Tuck 她的回覆如下:

Well, the catheter is inserted in the groin(導管由腹股溝進入). You will be awake but they do freeze the site with a local anesthetic.(會作局部麻醉,但人是清醒的)I wasn't given any pain killers just something to relax me.(我沒有使用止痛藥,只有放鬆的藥) You will hear a crackling sound as they inflate your veins, disturbing to hear but only minimal discomfort.(當醫師擴張氣球的時候,你會聽到一陣破裂的聲音,干擾你的聽覺,但是只是很輕微的不舒服而已) (因為頸靜脈窄化處很接近聽神經)
The catheter is guided up to the jugular vein and the balloon inserted and inflated. (導管會被引導至頸靜脈,爾後會開始進行氣球擴張)Both of my jugulars were done and the balloon was inflated many times. (在過程中,我的兩個頸靜脈都被擴張了許多次,確保血液流通順暢後才取出導管)I did not need a stent, my veins stayed open. (我沒有使用支架)
It's a simple procedure, not to worry. You will do fine. (這是一個很簡單的過程,別擔心,你會ok的!)
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增廣見聞,長知識


附上人體靜脈分佈圖,讓大家知道自己體內的靜脈是長什麼樣子。點圖放大可看到所標示的"進入處"
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2010年5月15日 星期六

波蘭有關CCSVI手術的報導

以下為波蘭醫師Dr. Marian Simka and Dr. Jacek Kostecki有關CCSVI手術的影片

有沒有人可以翻譯的? 都是波蘭文(還是俄文?)....
不過可以看見手術的過程,或許對醫師和病人都有幫助
一定要看完,手術的過程會穿插在影片中。
如果可以做進一步翻譯的話,就會對此一手術完全的瞭解!!

CCSVI-1 這個影片當中感覺上氣球 (balloon catheter)似乎是由病人的腹部以下的部份進入,不知道是由那一條靜脈?

以下為病友Greta所提供的翻譯,非常感謝他!!
Video 1:
Why does MS occur?
- because blood going to the brain can not flow away from the brain which then causes the buildup of iron. Eventually inflammation occurs and this leads to MS
因為血液滯留在腦部而推積了"鐵" 最後就造成中樞神經系統發炎而導致MS的產生!
The surgery for the patients in this video cost about 12,000zl because they needed some additional tests to be performed. On average the operation should cost about 9,000zl. This cost is fully paid by the patient.

In the interview with the doctor, the doctor mentions that the operation is not easy but it is not the most difficult procedure in vascular surgery. Basically what they do is put in a stent into the internal jugular vein. 醫師提到此手術並不容易,但並不是靜脈手術中最困難的。基本上他們把支架放到頸靜脈中。
Then a question of why has such an operation not been done before was asked. The answer that the doctor gave was that no one before looked at the vein to be the problem until recently.
They also mentioned that in the procedure that they were doing that the problem was with the valve(靜脈瓣膜) in the vein which caused venous stasis. This usually is the problem with the lower extremities(下肢靜脈也有窄化的問題).


CCSVI-2 內部有對於手術中所使用的氣球和支架(stent)等 balloon catheter有詳細的說明


以下為病友Greta所提供的翻譯,非常感謝她!!
Video 2:
During the procedure the patient is fully conscious and is able to watch the procedure on the screen.

So far it's only been a couple of months of post-op observation but they see that the overall state of the patient improves. However it is still hard to say what the long term effects will be.目前手術後的並人在數個月之內都有進步。

Question: Is there a chance of total remission of the disease after the procedure?
是否有可能完全消除所有的症狀?
Answer: patients from the states who had the operation performed in the early phase of the disease had almost complete remission of symptoms. When the operation is done in the late phase, total remission can't be expected but the patient does get better.
症狀要完全消除很難說,但是病人會覺得好很多!

In Italy they did only balloon angioplasty but in 50% of the patients there was a restenosis of the vein this is why it is better to use the stent. The stent itself is very elastic and flexible.
波蘭醫師提到在義大利的研究只用氣球,但是手術後有50%的病人的靜脈會再度窄化。所以他們使用支架。
Patient then mentions that for 2 months after the procedure he has to take heparin.

病人提到手術2個月之後會服用heparin此一藥物

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2010年5月14日 星期五

國外手術中以及scan的影片,分享給大家

幾個國外手術中以及scan的影片,分享給大家,各位可以從Youtube上用關鍵字 :
Liberation procedure CCSVI 就可以搜尋到很多



Liberation Day - Interview with Diana Price



Liberation Procedure, CCSVI




CCSVI 1

CCSVI 2


CCSVI Jugular Venoplasty - Scans & Commentary

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2010年5月13日 星期四

再看一個國外手術後成功的例子

Multiple sclerosis patient  Kornelija Valentic of Surrey is all smiles after undergoing a  'liberation procedure' that has relieved many of her MS symptoms.

Multiple sclerosis patient Kornelija Valentic of Surrey is all smiles after undergoing a 'liberation procedure' that has relieved many of her MS symptoms.

Canwest News Service

A Surrey woman is crediting an experimental procedure performed at Victoria General Hospital for clearing up her multiple sclerosis symptoms, even if the treatment earned her doctor a professional rebuke.

Kornelija Valentic, a 38-year-old mother of three who is nearly disabled by MS, said all she hoped to get from the procedure was an end to her constant headache.

幾乎癱瘓的38歲的Kornelija Valentic 只希望藉由此手術能夠解決他的頭痛問題。

But within 48 hours of the procedure, which involves widening veins in the neck, she was walking better, her vision improved, she recovered feeling her hands and feet and regained control of her bladder.

但在48小時的手術過程後,靜脈擴張後,他走得更好了他的視力改善了他可以感覺到他的手和腳而且可以控制膀胱,可以自主的控制自己的排尿了!

真是太棒了!!

However, last week it was learned the Victoria radiologist who performed the procedure, along with one other, had been chastised by medical officials at Vancouver Island Health Authority for performing what's considered an experimental procedure outside of an approved trial.

The treatment, known as "liberation procedure" has unleashed enormous pressure from MS patients and their supporters on doctors and health administrators ever since it was first reported in 2008.

"I wanted the headaches gone," said Valentic in a telephone interview. "My little bonus is being able to make it to the bathroom, being able to see, hand-tremors that are gone and I can drink my coffee without spilling anything.

我只是不想要頭痛而已,但我卻意外獲得了許多的回復,我能夠自主的到浴室,我看得見了,手顫抖的情形消失了,以後我喝咖啡的時候不會再把咖啡濺出來了!

I wasn't expecting it. But you know what? I'll take it."

希望每位MS病患都能夠像他一樣,張開雙臂歡喜微笑!

Read more: http://www.vancouversun.com/health/Surrey+woman+praises+experimental+procedure/3016451/story.html#ixzz0nnC9ZZeB
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印度也提供了CCSVI的手術

CCSVI Surgery for Multiple Sclerosis in India

在印度的Medical Tourism Corporation提供了全面,完善,可以負擔(USD6500)的手術套餐供給需要的MS病患。

Dr Zamboni’s Liberation Procedure for treatment of multiple sclerosis is a new but increasingly popular approach. Medical Tourism Corporation’s India Liberation surgery package is comprehensive, affordable, and makes no compromises.

(I-Newswire) May 12, 2010 - Liberation procedure for Multiple sclerosis in India is bringing new hope to patients suffering from a disease that was previously thought incurable. It is being facilitated by Medical Tourism Corporation, a popular provider of medical tourism services from Texas, US.

Also known as Zamboni Procedure India (http://www.medicaltourismco.com/neurosurgery/venous-angioplasty-stenting-abroad.php), surgery for multiple sclerosis is a revolutionary new approach to treating the disease. Dr Paolo Zamboni from Italy is credited with coming up with the idea that multiple sclerosis was probably a dysfunction of drainage of the veins, a condition which he called Chronic Cerebrospinal Venous Insufficiency (CCSVI). Hence, he argued that endovascular surgery would restore flow in these vessels and lessen MS symptoms. As his concept was to free up the flow of blood in cervical and thoracic veins, the procedure came to be popularly known as Liberation procedure.

Initial trial results have been very satisfactory and Dr Zamboni’s theory is now being actively studied by Canadian and US researchers. CCSVI procedure in India is being offered by experienced and highly qualified neuroradiologists (endovascular neurosurgeons) who are considered among the best in the country.

Medical Tourism Corporation provides all information related to multiple sclerosis surgery abroad and the choices available to you. Its India package for multiple sclerosis is extremely affordable and covers 5 days stay in a hospital private room where a companion can stay with the patient, Venous Angioplasty (Liberation Procedure), nursing care, procedure fee, tests like a post op jugular Doppler and 2 neurology consults, patient's food and airport pick up and drop.

該機構提供了5天可供家屬陪伴的住院單人房,整個手術過程,護士照顧服務,手術後的靜脈超音波掃描確認,包含了病人的膳食以及機場接送服務等。

Apart from the hospital stay, the patient has to stay in a nearby hotel for three more days for post-operative checks. The hotel stay is at the cost of the patient.

The hospitals in India where the surgery is offered have the latest cutting-edge equipment like flat panel Biplane DSA (digital subtraction laboratory) that provides ultrahigh resolution (2048 matrix) of cranial (brain) and spinal blood vessels. This unit is one of the most advanced units installed in this part of the world.

Its features include biplane technology, that is, its two C arms help in visualization in two planes simultaneously; flat-panel technology which achieves high-resolution images with much less radiation exposure; 3D technology, which helps in precise assessment of the vascular anatomy and pathology; and advanced DynaCT, which has an angiographic suite built in a CT scan-like facility for early detection of any complication during the procedure.

To qualify for the surgery, the patient is evaluated first by using Doppler Ultrasound and MR Venogram for Cranial Venous putflow pattern. If there are indications of abnormality then further transfemoral venographic study is also required. Treatment is then done by angioplasty (opening of narrowed or blocked veins) of the stenosed veins and placing of stents if required.

Multiple sclerosis surgery in India is an increasingly attractive option for patients in an otherwise bleak scenario. The surgery may not make people in wheelchairs get up and walk, but it has been known to stop further degeneration or disability.

看起來也相當具有吸引力呢。

Venous Angioplasty Stenting for Multiple Sclerosis (Liberation Procedure)

Venous angioplasty stenting for multiple sclerosis (Liberation Procedure) is the most advanced procedure for the treatment of multiple sclerosis (MS). CCSVI or Chronic cerebro-spinal venous insufficiency syndrome is considered to be primary cause of multiple sclerosis disease. CCSVI syndrome is caused due to insufficient blood flow between central nervous system and heart through cervical and thoracic veins.

Venous angioplasty stenting for multiple sclerosis 手術室圖片

Diagnosis and treatment:

Patient is evaluated first using Doppler Ultrasound and MR Venogram for Cranial Venous putflow pattern. If there are indications of abnormality then further transfemoral venographic study is also required. Treatment is then done by angioplasty (opening of narrowed or blocked veins) of the stenosed veins and placing of stents if required.

Venous angioplasty stenting  abroad病房圖片

Venous angioplasty stenting for multiple sclerosis Costs and Packages:

The cost of the Liberation procedure is 6500 USD (with one stent) and patient will require a hospital stay for 5 days. Post discharge patient will require 3 days hotel stay before flying back home.

該套裝行程需要6500USD~約20萬台幣。還是不便宜,

The package cost includes 5 days stay in a hospital private room where a companion can stay with the patient, Venous Angioplasty (Liberation Procedure), nursing care, procedure fee, tests like post operation jugular Doppler, 2 neurology consults, patient's food, airport pick up and drop etc.



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2010年5月11日 星期二

MRV的結果

MRV結果 初步:

在注射顯影劑後的影像當中發現:

1. 兩側的靜脈(Jugular vein)都有窄化

2. 其中之一甚至有阻塞的現象

和我的直覺相同,也驗證了Dr.Zamboni的結果。

看來靜脈擴張手術是 勢在必行了!

下一步,再做更精確的檢驗?還是?
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又一位國外的MS病友手術後的經驗分享

My Liberation Adventure

謝謝病友 IrisLucky Lady的BLOG做了完美的詮釋~

3 月4號 我動完了手術 依顯影顯示我的血管是有擴大的(75%) 然後我不會感覺那邊有個東西存在

3月9號 我覺得有點小改善 我以前發紫的右腳變成身粉紅色(我想是血液循環有變好一點) 還有我現在可以站著切菜15-20分鐘 以前我通常都是做著做這些事

3月12號 他提到到他雙腳已經是粉紅色的。 提到 Dr. Zamboni 推論
鐵質是免疫系統攻擊的目標 然後我之前的檢查顯示我手術前鐵質累積在我的腦內比較多

3月17號 我有溫暖的腳趾跟手指了!而且平衡也有了改善
(當 中有提到另外一位病人也做了手術 他已經變冷加變紫好幾年的腳現在是溫暖而且是正常的顏色)

3月22號 1.手指跟腳趾還是溫暖的 2.平衡還是有改善的(有在做復健 建議大家也去做復健)3.我吃東西不會噎到了 手術前我一個禮拜會噎到幾次

3月26號 我比以前開郎多了(我覺得這也是大改善 心情好進步得會更快吧XD)
3 月30號 好像玩太兇 後來平衡跟走路都變差甚至更容易累但休息了一兩天有好了(重點是不能把自己累壞 要懂得量力而為)
4 月6號 1.手指跟腳趾還是溫暖的2.平衡沒變差3.疲勞問題有變好一點 4. 34天內只有噎到一次5.抽筋問題沒改善其他的也沒變 他還是需要拿拐杖輔助

4月16號 1.手指跟腳趾還是溫暖的2.沒噎到3.比較沒有認知疲勞4.平衡變好但雙腳還是很虛弱

4 月29號 他可以騎腳踏車連續8分鐘 以前大概3-5分鐘就累了

5月5號 他現在可以騎十分鐘

以上 大有改善!
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2010年5月9日 星期日

最近天氣多變化,請病友們注意別感冒了

最近天氣多變化,季節交替,冷熱變換,請病友們注意別感冒了

以免進一步誘發。

給大家的小叮嚀~
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另一位國外的MS病友在執行靜脈擴張手術後的經驗分享

先附上她的BLOG 連結(內有她本人手術前後的平衡感測試影片,以及她的MRV的影像)
其中影片當中做了平衡感測試的最佳示範!每個病友自己可以試試看!
MRV Scan from False Creek.

My CCSVI Liberation Procedure

我等待的過程,是要改變我的生活。
我前往索非亞,保加利亞的靜脈擴張手術治療 4月28日被對待 Grozdinski博士和他的團隊在德田醫院。

我 的症狀,我現在正在遭受(左邊)。我的改進(右邊):))

1。在我右手麻木的手腳。 1.Hands ....一點點的感覺已經回來了。我打字速度可以更快。他們工作的更好:)
2。視力問題。 2。我的眼睛已經大為改善,但仍然不吃藥的一半多。
3。走路困難。 3。我的腳不再觸發器進行到一邊,但我仍然有肌肉緊張和有點痛。雖然改進。
4。 疲勞。 4。我的頭已不再是在一個霧,我有一點更多的精力...仍在恢復!
5。肌肉無力 5。慢慢地恢復了一點力氣。
6。膀胱問題。 6。改善。
7。頭痛 /偏頭痛。 7。沒有像我以前每日頭痛。
8。平衡問題。 8。現在幾乎是完美的平衡 !!!!!!!
9。 冷的手和腳。 9。手和腳冷,但仍然沒有得到只要。
10。抑鬱症/情緒波動。 10。給我一些時間。
11 ..言猶在耳。 11。似乎並不壞,因為它被視為一次了。
12。肌肉疼痛/僵硬。 12。一些改善。!
13。慢詞召回。 13。提高
14。我不能忘記熱敏感.... 14。我終於能夠在英國首次泡溫泉了!!!!!!! :)))

看到越來越多的國外病友在手術前後的改變的例子,看到了國內這麼多與MS搏鬥的勇者們,何不試試看呢?
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又一位不輕易向命運低頭的MSer


2010/05/09 聯合報
多發性硬化症患者郭惠恩,小時因病導致近盲,憑些微視力學唱、畫畫;不料,中年病症再來侵襲,讓她癱瘓,也失去視覺、嗅覺、味覺和觸覺,她的妹妹郭 臨恩從小就是她的「導盲犬」,兩人共同向多發性硬化症纏鬥幾十年,仍不低頭,並以「生命如此豐盛」一書,寫出姊姊和生命搏鬥的故事。

為了寫出姊姊艱辛一生,郭臨恩花了三個月,將自己沈浸在回憶、淚水與電腦鍵盤,新書在昨天發表,被視為有如現代版「瞎眼得見、癱子得醫」見證。

四十二年前某天早上年僅七歲的郭惠恩跟爸爸說:「我什麼都看不見了!」身為牧師的爸爸初期以為是小孩厭學的藉口,但後來發覺問題嚴重,遍尋醫師,答案都 是:「失明了,但查不出原因,帶回家吧!」

郭惠恩透過蔣夫人宋美齡資助,到日本醫治,恢復少許視力,媽媽擔心她長大無法謀生,想辦法教她學唱,和妹妹彈琴伴奏「雙人組」,在台灣軍事院校巡迴一系列 音樂會。

後來郭家移民紐約,郭惠恩和家人在地鐵站經營小吃店,即使大雪紛飛,為了熟客照樣開店,她憑僅存光感,拜現代派畫家蕭勤為師畫畫。不料,兩年前,多發性硬化症發作,醫師一度發出病危通知。

「像我這樣的人,以後還能做什麼呢?」郭惠恩生病後,曾問伊甸基金會前董事長、醫師王剴鏘,王告訴她:「妳可以分享妳生病的經驗,成為別人的幫助和祝福。」

郭惠恩接受台北醫學大學附設醫院團隊治療,主治醫師康峻宏跟她解釋,這個病是身體免疫系統攻擊神經,就像電線失去絕緣外皮,會漏電走火,神經沒有髓鞘,無 法傳導,所以郭才會癱瘓,夜晚因神經痛難以入眠,甚至膀胱得靠尿管解尿

她也跟醫師說:「我會努力的,其他的事就拜託你了!」常認真復健好幾周,才做到正常人眼中的一個小動作,毫不氣餒的進行一年多,現已可拿柺杖走路,且不用 靠尿管如廁。


嗯,而我也正和惠恩姐一樣,做著和他相同的事,希望自己的經驗能夠成為別人的幫助更希望成為未患此病人的警惕和警思
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2010年5月8日 星期六

驚人的數據!給健康的人警惕!

無意當中,看到之前從醫院領藥留下的藥袋

隨便估一估,發現:
從2005年至今

大發作: 4次

次發作:約3次

小發作(急診):約6次

類固醇注射計量:約 10000 mg

類固醇口服計量:平均一天6~8 mg (total: 4380~5840 mg)

Rebif注射計量 : 22 mg x 33 = 66 mg

其他服用的軟便劑,鎮定安眠劑,肌肉鬆弛劑,抗經欒藥物等就不在話下

體重由原本的65kg 下降至現在的 53kg

每天約有至少8~10次的便意,每次約莫花至少20分鐘不等的時間在排空腹部內的氣體或廢物(因為自律神經已受損,腸胃蠕動已大不如前),也因此每天用餐完後也有將近2~3小時會處於一種一直打飽嗝的情形下(感覺自己很像隻青蛙)。

每天晚上睡眠平均中斷2~3次(在已經服用鎮定安眠劑的情形下),睡眠品質依舊無法獲得有效的改善,所以要讓神經恢復的狀態也有限。

使用的紙尿褲由只要出門就會備用一件(身上穿一件)至今減為一件。

下肢的緊繃程度依舊,麻,灼熱,刺痛感依舊,隨著氣候溫度變化,睡眠的好壞而有所影響。

其實,許多病友的數據並不亞於我,病友們對此文就無需做負面的聯想。

寫這文主要的目的是希望健康的人更能夠注意自己的身體
看到以上的數據應該會有所警惕和自覺,若不想要遭受這樣的結果,請好好關注自己的身體!

所以對於氣球擴張術有所期待

無論如何,將以平常心來面對任何的結果,身心平衡才是我真正要去學習的!
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祝福全天下的母親,母親節快樂

祝福全天下的母親,母親節快樂!

特別給病友的母親,或是身為人母的病友,也給我的母親。


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英國用骨髓幹細胞治療多發性硬化症試驗見成效_新華網

英國用骨髓幹細胞治療多發性硬化症試驗見成效_國際頻道_新華網

2010年05月07日
新華網倫敦5月6日電(記者黃堃)英國研究人員日前報告說,他們利用骨髓幹細胞治療多發性硬化症的試驗取得成效, 病人沒有出現不良反應,症狀也顯示出改善跡象。

  英國布裏斯托爾大學等機構研究人員在新一期美國《臨床藥理學與治療學》雜志上報告說,他們對6名多發性硬化症患者進行了這項試驗。研究人員在病 人麻醉狀況下抽取他們的骨髓幹細胞經過處理後注射到病人的靜脈中。隨後一年的觀察顯示,病人沒有出現嚴重的不良反應,而多發性硬化症的症狀也有所改 善。

  領導研究的布裏斯托爾大學教授尼爾‧斯科爾丁說,試驗結果令人振奮,這一療法的安全性得到證實。在療效方面,雖然相關分析仍在進行中,但相信是 注入靜脈中的幹細胞在保護神經係統和免疫調節方面發揮了作用,使病人症狀出現改善。他表示,接下來將開展大規模試驗,進一步確認這一療法的效果。

  多發性硬化症是一種神經係統疾病,患者自身免疫細胞會錯誤攻擊神經元髓鞘,造成患者出現視覺障礙、肌肉無力等症狀。目前還不清楚其具體病因,也 還缺乏有效的治療手段。

原文如下:

Bone marrow stem cell therapy offers hope to multiple sclerosis patients

The research team, led by Neil Scolding, Burden Professor of Clinical Neurosciences for the University of Bristol and North Bristol NHS Trust, completed the trial in patients with MS to begin translating the findings from the laboratory to the clinic.


The Bristol team report on this pioneering trial in an article published online in Clinical Pharmacology and Therapeutics.

The paper, 'Safety and feasibility of autologous bone marrow cellular therapy in relapsing-progressive multiple sclerosis' was performed at the Institute of Clinical Neurosciences, Frenchay Hospital, Bristol and the Bristol Haematology and Oncology Centre.

The study explored the safety and feasibility of cell therapy in patients with MS. Participants had a general anaesthetic during which bone marrow was harvested. The marrow cells were filtered and prepared so that they could be injected into the patient's vein later the same day.

The procedure was well tolerated and the participants were followed up for a year. No serious adverse effects were encountered. The results of clinical scores were consistent with stable disease. The results of neurophysiological tests raised the possibility of benefit.

Professor Neil Scolding said: "We are encouraged by the results of this early study. The safety data are reassuring and the suggestion of benefit tantalising. A larger study is required to assess the effectiveness of bone marrow cellular therapy in treating MS. We are hopeful that recruitment to this phase 2/3 study may begin towards the end of this year.

"Research into the underlying mechanisms is ongoing and vital, in order to build on these results. We believe that stem cells mobilised from the marrow to the blood are responsible, and that they help improve disease in several ways, including neuroprotection and immune modulation."

對於其他治療的方法(成人幹細胞療法)也證有許多不同的進展,是自救的方法之一。

也是另大家值得期待的!

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2010年5月6日 星期四

為了爭取實驗性的手術,加拿大MS病患上街聲援遊行CBC News - Canada

為了爭取實驗性的手術,加拿大MS病患上街聲援遊行
CBC News - Canada - MS patients rally for experimental treatment(原始連結)
北美加拿大掀起一股浪潮!
Canadians with multiple sclerosis appear on Parliament Hill in  Ottawa as part of nationwide rallies to demand access to an experimental  treatment.
Canadians with multiple sclerosis appear on Parliament Hill in Ottawa as part of nationwide rallies to demand access to an experimental treatment.
(Robyn Burns/CBC)

Canadians with multiple sclerosis rallied across the country Wednesday to demand access to a controversial procedure not available in Canada or covered by provincial health insurance policies.

The procedure, developed by Italian researcher Dr. Paolo Zamboni, involves angioplasty to help ease the flow in neck veins of blood from the brain to the heart. Zamboni believes narrowed or blocked veins force blood to move backwards or reflux back into the brain and spine, causing damage.

He's termed the condition chronic cerebrospinal venous insufficiency, or CCSVI.

Rallies were planned for Halifax, Ottawa, Toronto, Regina, Edmonton, Vancouver, Victoria and elsewhere. 超過7個城市都有相對的聲援遊行活動

"With this kind of an illness, there isn't time for them to take three years to find out something," said Jennifer Noriega of Edmonton, a 38-year-old mother of two who has been living with MS for 11 years.

Multiple sclerosis patients and their supporters rally in Halifax  for funding for a new treatment.
Multiple sclerosis patients and their supporters rally in Halifax for funding for a new treatment.
(Jean Laroche/CBC)

Noriega, who can no longer walk, tried many different medications, including chemotherapy drugs, and now plans to travel to Bulgaria for the treatment.

"The risk might be that it works and then three months later it doesn't work," Noriega said. "But at least I'll have those three months."

More than 20 Canadians travelled to a clinic in Poland between February and April for the treatment.

今年2月到4月之間,有超過20個加拿大MS ers 遠赴波蘭動手術

Many MS specialists say Zamboni's procedure is experimental at best and could be dangerous.

Studies are underway to show how common CCSVI is in MS patients, those with other neurological conditions and healthy people, as well as to explore its potential role as a major risk factor in MS.

But despite the specialists' hesitation, some Canadian patients are travelling overseas, paying for tests and surgery out of their own pocket. Others are lobbying for the Canadian health-care system to cover the diagnostic tests to look for blocked veins in people with MS.

"I've been fixed," Steve Garvie, 53, told the crowd gathered at Queen's Park in Toronto. Garvie was one of five people who had the procedure at Royal Victoria Hospital in Barrie before the surgeon voluntarily stopped.

"What they're doing is criminal," Garvie added in an interview. "Every person that wants the operation should have it."

About 150 people gather at Queen's Park in Toronto to demand that  multiple sclerosis patients get access to a controversial new surgical  treatment.

About 150 people gather at Queen's Park in Toronto to demand that multiple sclerosis patients get access to a controversial new surgical treatment. (Mike Crawley/CBC)

"With any new treatment, whether it's drugs or technology, we need to ensure that it is thoroughly researched before it is approved for use," said Andy Weiler, a spokesperson for Alberta Health. "It needs to be an evidence-based decision that it is a safe and effective treatment."

Likewise, Nova Scotia's Minister of Health, Maureen MacDonald, met with protest organizers in Halifax for about 30 minutes on Wednesday but was not swayed by their arguments.

"We still don't know what the risks or the evidence are of the treatment," MacDonald said. "At this stage, it would be premature to have kind of a mass testing process for a treatment that is still unproven."

MacDonald said no other province is funding this kind of testing or treatment for MS.

$10 M in federal funding sought

In a release Wednesday, the Multiple Sclerosis Society of Canada called on the federal government to provide $10 million for research into CCSVI and MS.

The MS Society proposes that the $10 million be appropriated to the budget of the Canadian Institutes of Health Research and earmarked for CCSVI research.

MS Society representatives were to meet with MPs in Ottawa on Wednesday and Thursday to discuss other major issues:

  • Creating a nationwide income security program for people affected by MS that would replace what the society calls "the current hodgepodge of disability pensions, social assistance programs and tax credits, some of which cannibalize each other, resulting in less money for people with disabilities."
  • Increasing funding for health research with a focus on "innovative health research that can be translated rapidly into therapies that can benefit people with MS and other chronic conditions," including research into CCSVI.

Last month in Toronto, Zamboni and his collaborator, Dr. Robert Zivadinov, associate professor of neurology at State University of New York at Buffalo, cautioned people with multiple sclerosis to not rush to seek out the surgical procedure to unblock veins unless it was through official clinical studies.


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2010年5月5日 星期三

英國也加入了CCSVI的行列

CCSVI - A Major Breakthrough in the treatment of MS
英國的London and Glasgow也動起來了

he radical new theory of venous drainage being a major contributory factor in MS could be one of the greatest breakthroughs in the history of medicine. Dr Paulo Zamboni’s discovery that a large proportion of MS patients have blocked jugular and azygous veins, what he terms Chronic Cerebrospinal Venous Insufficiency (CCSVI), opens up an entirely new way of thinking about the disease. Zamboni has published two landmark papers in 2009; the first describing the condition and the second showing the effects of the “liberation” treatment on 65 patients. Although these early results are encouraging, supporting research is needed before we can be sure that this is a major factor in MS. A major confirmatory study of 500 patients in the University of Buffalo, New York is due to present its findings in the near future but early indications are that this supports Zamboni’s hypothesis.

The implications of this new finding are huge, especially for Scotland which has by far the greatest incidence of MS in the world. Scientists think that the CCSVI abnormalities precede the onset of neurological symptoms. It may be possible in the future to screen first degree relatives of MS patients to identify and treat preclinical CCSVI. This is a truly remarkable breakthrough. It also makes sense of some of the previously unexplained findings in MS. The fact that lesions are centered round small veins fits this new theory. The beneficial impact of vitamin D, antioxidants and omega 3 also fits the CCSVI hypothesis. Vitamin D interacts with over 2,000 genes in the body and has a marked impact on vein pathology. Deep venous thrombosis is 50% more likely in the winter months and low levels are associated with increased inflammation in veins.

Glasgow Health Solutions is actively seeking to offer scanning for CCSVI in the UK in 2010 in both London and Glasgow. The Doppler ultrasound scan required to show the CCSVI abnormalities has been specially adapted and requires specialist training from Dr Zamboni and his team. It is vital to work with the recognised specialists in this field and we hope to have an ultrasound technician trained by Dr Zamboni later this year. The cost of the scans in the UK is still to be finalised but should be around £450. We are also liasing with intervention radiologists to develop treatment centres around the UK. If you wish to register your interest and be kept informed of these developments you can register your interest on our web site.

Venous Health – it now appears to be vital in MS to keep veins healthy and reduce the possibility of narrowing and blockage. One of the most useful treatments of varicose veins is an antioxidant complex – Daflon. This a flavanoid and several research projects show that it improves varicose veins and varicose ulcers. Other flavanoids have also been tested with pycnogenol ( pine bark extract) being more effective that Daflon.

Vitamin D has a major role in the development of vein inflammation and is also a major factor in the development of venous hypertension. The inflammatory process in veins is similar to that in the development of plaques in arteries and may explain the efficacy of omega 3 fish oils in improving outcomes in MS. In addition to the surgical “liberation” procedure, it makes sense to ensure all nutritional factors are optimised to reduce vein inflammation. Future research should also consider these factors including checking vitamin D and omega 3 levels in addition to regular antioxidant use.

Quote from Gianfranco Campalani (sent to Dr Tom Gilhooly in February 2010)

" I am 64 and I was diagnosed with MS in 1986. I have being working full-time as a consultant cardiac surgeon in Belfast for the last 17 years. I met Dr Zamboni in my home town of Ferrara over three years ago and, following a Doppler study, I underwent angioplasty of both jugular veins by his team with significant improvement of my condition. Last Summer I noticed a slight deterioration and a Doppler study in Ferrara revealed re-occurrence of the narrowing of the jugular veins. I underwent a second liberation procedure in Belfast last October, with consequent improvement. For the last three years I have been campaigning in favour of the theory of CCSVI amongst colleagues in my hospital with no avail. I believe that the medical establishment has to wait for further evidence to be produced before accepting this new and revolutionary approach to the understanding and the treatment of MS".

一位64歲的MS病患,做了兩次靜脈擴張術,皆有進步。 對一位年紀如此大的人而言,願意做這樣的手術只表示一件事:
停止惡化,回覆原本的健康是刻不容緩的事!
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2010年5月2日 星期日

多發性硬化症與基因的關係

長久以來,科學家和醫學界也一直存此種懷疑。但是目前仍然沒有答案。仍存在有一定的反證,請見目前最新的報導:
翻譯新聞如後,

Looking at Multiple Sclerosis DNA for Clues

Saturday May 1, 2010

A recent study published in the April 28th issue of Nature is befuddling to those looking for answers about multiple sclerosis (MS) on the genetic level.

Scientists recruited three pairs of MS discordant identical twins (one of each pair had MS and one did not) to provide samples of DNA. The researchers then sequenced the entire genome for each of the participants - 2.8 billion "base pairs" for each one, to be exact - and compared the twins' DNA to one another.

Guess what they found? No difference in the DNA. None at all.

The scientists even conducted a very detailed investigation of immune cells, as MS is though by most experts to be an autoimmune disease, basically sequencing those and looking for differences. Still, no differences.

Although it would be tempting to say that this study (which cost 1.5 million dollars and took 18 months to complete the sequencing) provided no information, the fact is that it did tell us something - that there is apparently no direct genetic cause of MS. Otherwise, there would have been a difference in the DNA between the twins.

This doesn't mean that genetics doesn't play a role in MS, however. It could be a situation where there is a genetic component that is "necessary, but not sufficient" and requires an environmental factor to start the process that leads to MS, like an infection that one twin was exposed to and the other wasn't.

It is estimated that the likelihood of an identical twin developing MS if the other twin has MS is 30%. This falls to 4% likelihood in a non-identical twin and less than 3% in a non-twin sibling.

This is the first time that the entire genome of twins with autoimmune disease has been sequenced.

Source: Sergio E. Baranzini, Joann Mudge, Jennifer C. van Velkinburgh, et al. "Genome, epigenome and RNA sequences of monozygotic twins discordant for multiple sclerosis." Nature 464, 1351-1356 (29 April 2010).

基因並不決定一切

新華網倫敦4月29日電

英國《自然》雜誌是一本刊登科學論文的學術刊物。4月29日出版的《自然》雜誌的封面是兩名女性的剪影,一人站著而另一人坐在輪椅。封面論文講的 是這對基因完全相同的同卵雙胞胎姐妹不同的生命故事:她們一人罹患多發性硬化症,而另一人完全健康。論文得出的結論是,基因並不決定一切

   參與這項研究的科學家賽爾吉奧·巴蘭茲尼說,雖然這對雙胞胎的基因組相同,但由于後天不同的環境因素等原因,導致了兩人完全不同的結果。

   近年,全球基因科學發展迅速,但公眾對于基因的認識有走向偏頗的勢頭。此次研究,恰好是對這種偏頗敲響了警鐘。

   今年是首個人類基因組草圖公布十周年。十年來,基因測序技術飛速發展。繪制首份基因組草圖需要多國科學家聯手,耗時十年、耗資數十億美元。現在,一個小 規模的研究小組可以在幾個月之內以一兩萬美元的成本測出一份基因組。

  技術的巨大進步導致基因研究工作在 全球迅速鋪開。目前這方面研究以發現某種疾病的致病基因為主。如去年澳大利亞和新西蘭研究人員在《自然·遺傳學》上報告發現了兩個與多發性硬化症有關的基 因。

  但是這類研究經常受到大眾的錯誤解讀。如《自然·遺傳學》曾刊登與吸煙有關的基因研究報告,隨後大 眾媒體上出現了諸如“吸煙易上癮都是基因惹的禍”、“戒不掉煙,可怪基因”之類的標題。這種論調否定了後天環境和個人生活習慣對健康的影響。本次研究及時 揭示了問題的另一面:雖然基因對人類健康影響重大,但並不決定一切

附上Nature的官方網頁http://www.nature.com/nature/journal/v464/n7293/

所以,即便基因有缺陷,或許並不足以影響後天的環境也是相當重要的,就如同一個彈藥庫內放了滿滿的易燃物和炸藥,若沒有相對的高溫和引信是無法引起此彈藥庫的爆炸的

所以,對於已經生病的MS病友們,我們目前可以做的就是把後天的環境調整好,把引信和雷管拆除!靜脈擴張也許也是一種方法之一 ~
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