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6月30日 星期三

我手術後的情況更新

請見以下連結:

CCSVI Before Liberation 2010/6/16
http://www.youtube.com/watch?v=f8uVac1JH-k

CCSVI After Liberation Day3 2010/6/21
http://www.youtube.com/watch?v=fCtzxB2pjO0

CCSVI After Liberation Day8 climb stairs
http://www.youtube.com/watch?v=PYIwMb03k4k

身體的反應:

我的右大腿力量有了提昇,走起路來比較穩一些,另外從椅子或馬桶上做起來和坐下開始可以用自己雙腳的力氣去執行這個動作了, 不用藉由扶著其他的物品來支撐站起來。整體行動力變較好。

因為只有擴張一部分的左側頸靜脈(左腦的血液回流狀態較好,所以左腦所控制右半邊的大腿有了正面的反應)。擴張前後窄化處的兩邊壓力差由17 / 13 cm H2O 降成 16 / 12~13 cm H2O (與文獻稍有點差距)

目前已經有3種症狀有 出現改善的情形。至於我的左腿,依舊沒有好轉,因為我的右側頸靜脈並沒有擴張。

我的排便/排氣狀況依舊困難,因為大腸最後的出口(肛門)位於軀幹的左側,所以該括約肌我想也是受到右腦的控制,也因為我的右側頸靜脈並沒有擴 張,自然也就沒有改善。(肛門並不是位於身體的中心喔,和心臟一樣,位於身體的左側)。這個部份是相當困擾我的其中一部分。

持續的噁氣,仍舊另我感到苦惱。

疲累Fatique的感覺:
這 個症狀目前沒有改善,依舊,早上約莫10點就會想睡,中午不睡就會很累,下午約莫4點就會累。需要再觀察,也許是手術後的恢復期也說不定.....

平衡Balance:
右 大腿的力量增強有助於平衡的改善,但是目前在行走上還是會有不穩的情形,仍然需要拐杖預防跌倒,此外,無法走一直線!

感覺:
下肢麻 木刺痛、或灼熱的感覺依舊。左腿依舊對冷熱敏感,對冷水會感到刺痛。右腿對於冷水的感覺較手術前正常對冷水感覺不像之前刺痛。走路後下肢麻 木刺痛感覺較強烈。

僵硬
下肢僵硬的感覺依舊,走路後,久坐後僵硬感覺較強烈。

睡眠
夜間睡眠依舊常中斷(2~4次),也許因此而導致白天容易疲累所致

Overall, it works!

下次回診將在和醫師做進一步的討論~ 右頸靜脈擴張的可能性。Re-Reborn?
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2010年6月28日 星期一

微不足道的夢想-健康

時間隨著牆上的時鐘的滴答聲來到了2010年,不自覺得和此罕見疾病[多發性硬化症] 已經 “倒陣”了快兩年。 正確來說,已經與她共處了近5年,因為誤診的緣故,導致第3次發病時已是下半身癱瘓。不禁回想起確診後2009在罕病基金會上第一次的投稿題目: 我的新年新希望. 仍舊記得那時候寫的內容其中一段:… 曾希望像那藍光半導體之父中村修二般在光電半導體研究上有一番作為,或妄想成為另一位週延鵬,在智慧財產上有所成就的我…...

這是我第3次發病前的夢想。也或許因為過度的自我追求理想而搞壞了自己的身體。正因如此,我細細思索著,如此遠大的夢想(一廂情願的癡心妄想)或許太不切實際,忘了自己有幾斤兩重,這個病正是來告訴我教導我一件最重要的事:若不善待自己的身體,再多的夢想也是枉然,也將成為空想或絕響。所以我不再存有這樣遠大的夢想了,我的夢想改變了,變得很單純,或許對一般正常人而言是微不足道的一件事,但是對我和我患有同樣罕見疾病的人卻可是一件不容易完成的夢想。那就是:復原!讓自己重獲健康

人因為有夢想而偉大,而我卻因為仍懷抱有夢想而堅強!和其他罕病病友一樣,我將繼續堅強的走下去,不僅是懷抱著這種簡單的夢想如此而已,我也正在逐夢的過程當中。有人說:有夢最美。但是我不僅要有夢,更要勇敢的逐夢踏實! 近2年來,上網搜尋國外針對多發性硬化症的研究並且和病友分享已經成了我人生當中的點點滴滴,這當中不只讓我自己覺得快樂同時也也帶給大家一些鼓舞或希望。現在的我都活在逐夢的當下,因此每天都活的很快樂。我覺得人生無論處於何種狀態,不論是順境還是逆境,都不能沒有夢想,若一旦失去了夢想,生命將失去了他原有的光彩!

我很喜歡優客李林的一首歌:有夢有朋友。因為我這一個簡單的夢想讓我在逐夢的過程當中結識了許多的朋友,彼此相互打氣相互扶持,凝聚了一股看不見的力量,包含希望和關心。多麼幸運在人生的旅途上遇見你們,和你們一同向前行,讓我的生活更加的溫暖同時更有信心也更有力量。也因為有了彼此關心的你們,我會變得更堅強!懷抱著夢想和朋友一起分享,未來才會更有看頭!我們的心靈也才會越飛越高,越飛越久!

這些年來的日子中依舊充滿著風浪和起伏,但不變的是真心,不變的是理想,不變的是希望,無論夢想是大是小,無論夢想是否改變都不能讓夢想的火苗消失! 我還有微不足道的夢想要去完成,還有很多明天要走,就讓我們繼續邁出步伐向前行。Let’s keep walking!

那你的夢想呢?
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2010年6月27日 星期日

多發性硬化症新定義和新名詞

今天早上想到的,給多發性硬化症改個新名詞!!

原始的名詞: Multiple Sclerosis(多個硬塊)--> 因為MRI scan 顯示腦部有多個白點班塊

新的名詞 : Multiple Stenosis (多個窄化)--> 因為MRV scan 顯示靜脈狹窄(venous stenosis)

同意嗎?

還是MS~....
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2010年6月26日 星期六

國外病友經驗分享

一個頸靜脈上裝有3個支架以及一個氣球擴張的44歲的女性MS病人 (一條靜脈竟然有多個窄化點!!)
請仔細看影片中的其中一部分就可以知道,右頸靜脈裝有一支架,接近腦部,狹窄點和我很接近,左頸靜脈各有兩個支架以及一個氣球擴張部份(近胸腔)

該手術由Dr. Michael DakeStanford Hospital Medical Center完成

Images from my diagnostic MRV showing jugular stenosis, and corrective stents/angioplasty.

這是我見過CCSVI最大的工程~

更多閱讀以及病人術後追蹤請見: More at http://healingpowernow.com

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我的情形和其他病友再多一些比較

我的右頸靜脈,,離腦部很接近

離腦部較遠

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2010年6月25日 星期五

一個顱內頸靜脈和我類似的病患Blake Lemberg的手術前後照片和資訊





Here are the veinous MRI scans of my blocked-up jugulars before and after being opened and stented. Now I have (2) 1.2 inch metal tubes in my jugular beins just below my ears. they are about as big in diameter as my ring finger. I was one of the last patients treated by⋯⋯ Dr. Dake in August '09 before he was made to stop treating patients for Chronic Cerebral-Spinal Veinous Insufficiency syndrome, or CCSVI. You will see in these pictures how my right jugular was 90% occluded and the left approximately 70% occluded prior to being opened and stented via the femoral artery. These occlusions, or blockages, are thought to cause backflow / turbulence problems in the brain that may eventually lead to excess iron or other deposits in the tissue, eventually prompting an immune response that somehow goes out of control and contributes to the development / progression of MS. Since the procedure, I have noticed marked improvements in balance, coordination, fatigue,reduced heat sensitivity, improved mood, and greatly improved energy level. I was never very visibly disabled (when not in a flare), but getting an extera 3 hours out of my days is huge. no more napping or early bed-times. No more limping around. I still have nerve damage that may never heal. My left face through my foot may never feel quite right. My hip may be a little less than perfect. when I catch a cold I may feel some reminders of what it was like to live without blood flow. reminders of days when I couldn't hold a grocery bag or move my left toes. But absent the chronic base-line inflammation that I believe the procedure has relieved, I must proclaim that my life is much better. I am waiting to see my local neuro and get scans confirming no progression I am waiting (and cheering and hoping) for others to be able to post pics like this on Facebook!




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2010年6月23日 星期三

國外IJV stenosis 的情形似乎多在頸部?

國外IJV stenosis 的情形似乎多在頸部而不在頭顱內部(影像都可以還看到肋骨),不過這是就我所能搜尋到的公開資訊....或許也有其他未公開的資訊也有在頭顱內部也說不定。

所以我的例子其實相對於複雜(在頭顱內部),而且難度比較高。

請參考以下連結影片.....

My right jugular vein before the balloon angioplasty 6/1/2010

http://www.youtube.com/watch?v=dFYn4tsiNoQ&feature=related

My right jugular vein after the balloon angioplasty 6/1/2010

http://www.youtube.com/watch?v=WNuTqlRPgn0&feature=related

Liberation Procedure, CCSVI

http://www.youtube.com/watch?v=_lW8wQjvcwE&feature=related

CCSVI: Jugular Venoplasty - Scans & Commentary

http://www.youtube.com/watch?v=vZpIbpPAJGE&feature=related

CCSVI 1

http://www.youtube.com/watch?v=yhNST7_EN_A&feature=related

CCSVI 2

http://www.youtube.com/watch?v=TP7NyN_9g2U&feature=related

CCSVI

http://www.youtube.com/watch?v=9_bwOMN3wZ0&feature=related

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2010年6月22日 星期二

夏天到了,注意高溫

Overheating a multiple sclerosis threat


DALLAS, June 22 (UPI) -- Summer heat can cause the recurrence of MS symptoms for people with multiple sclerosis, a U.S. neurologist warns.

"Heat -- whether from infection, air temperature, prolonged exercise or even consuming hot liquids or foods -- can provoke the return of old MS-related symptoms such as numbness, stiffness, weakness or even vision loss," Dr. Elliot Frohman, director of the Multiple Sclerosis Program and the MS Clinical Center at the University of Texas Southwestern Medical Center in Dallas, says in a statement.

Researchers found the heat can slow down the speed of nerve messages for people with MS but heat alone does not cause a new attack or any additional nerve damage, Frohman says.

"Most patients can manage their heat sensitivity by avoiding situations that could be dangerous such as being out in severe heat without assistance, taking hot baths or showers, ingesting ice-cold beverages and, in some cases, drinking hot liquids like coffee and tea," Frohman adds.



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Reborn重生之後對人生的另一種看法

6/18重生日

之後我的外觀或許不變,內心已經大大地不同。

其實,兩年一個月前就已經開始轉變,只是至今已經完全的成熟蛻變。

自我理想的實現,金錢物質生活的追求,都已經不重要了。

身體的健康才是最真實最重要的

看著世界上仍有許多人拿著生命來賺取金錢,到最後來只不過再拿錢來換生命
(這種事情天天在上演)

有了大筆的金錢財富卻無福享受,何必呢?

社會的價值觀越來越物質化,競爭越來愈劇烈,整個世界只有越來越把人類推向極端

企業一定非成長不可嗎?GDP一定要超過2%嗎?沒日沒夜的工作似乎已經成為社會的常態。

未知的文明病越來越多,中風和罹患癌症的年齡也越來越年輕。

科技真的是源自於人性嗎?

或許是源自"貪婪的人性"吧!

慾望少一點,心情輕鬆點,煩惱少一點,健康多一點快樂也多一點

你說呢?
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寫給病友 很重要

對於我們得到MS的人,我發現有一個共通的現象就是:我們都會想太多

既然得到這種病,更會想太多(通常都是朝負面的方面想),所以,想太多並不會改善這個病,除非你是朝正面想。

與其再一旁乾想,胡思亂想,倒不如去找出答案,去學習吸收相關的知識,與其一直猜測,不如進一步真正去瞭解,吸收各方面的資訊,瞭解並關注自己的身體。

若我們對於自己身體的構造和運作都不甚瞭解,又如何去處理我們的病痛呢?

Knowledge is Power知識就是力量

無知只會讓我們一直處於害怕懼怕的狀態,而害怕就是邁向黑暗面的起點,所以當我們瞭解了,知道了,自然就不會害怕,不害怕,就能夠像好的方向光明面走。

以前人類不知道閃電,和火的形成原因,所以害怕,現在知道了,就不害怕了,不是嗎?

對於靜脈擴張術,我想有許病友仍然會有疑慮,這是很正常的,所以你們要做的就是真正去瞭解。瞭解之後,才會對你產生實質的幫助。

每個人靜脈的情形都不盡相同,像我的部份就比較棘手,所以處理起來會有困難度,若是窄化的部份位於腦部的話,也不用太擔心,因為未來一定會有方法可以解決。只要將身體的狀態維持在一定的穩定度,醫學的進步一定會創造奇蹟,你就會等到那一刻。就像Dr. Zamboni一樣。以後仍有幹細胞治療獲其他的藥物等著我們呢。
這就是我的信心。

因為有的病友可能會把所有的希望放到靜脈擴張手術上,但是若你的靜脈沒有窄化,也不需要沮喪,這表示你的靜脈是正常的,也值得高興,不是嗎?

無論如何,永遠保持信心,樂觀的去面對未來!這樣對我們自己才會有幫助!
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3 days after liberation 手術後3天

身體的反應:

我的右大腿力量有了提昇,走起路來比較穩一些,另外從椅子或馬桶上做起來和坐下開始可以用自己雙腳的力氣去執行這個動作了,不用藉由扶著其他的物品來支撐站起來。

因為只有擴張一部分的左側頸靜脈(左腦的血液回流狀態較好,所以左腦所控制右半邊的大腿有了反應)。

目前已經有兩種症狀有出現改善的情形。至於我的左腿,依舊沒有好轉,因為我的右側頸靜脈並沒有擴張。

我的排便/排氣狀況依舊困難,因為大腸最後的出口(肛門)位於軀幹的左側,所以該括約肌我想也是受到右腦的控制,也因為我的右側頸靜脈並沒有擴張,自然也就沒有改善。(肛門並不是位於身體的中心喔,和心臟一樣,位於身體的左側)。這個部份是相當困擾我的其中一部分。

疲累Fatique的感覺:
這個症狀目前沒有改善,依舊,早上約莫10點就會想睡,中午不睡就會很累,下午約莫4點就會累。需要再觀察,也許是手術後的恢復期也說不定.....

平衡Balance:
右大腿的力量增強有助於平衡的改善,但是目前在行走上還是會有不穩的情形,仍然需要拐杖預防跌倒,此外,無法走一直線!

感覺:
下肢麻木刺痛、或灼熱的感覺依舊。依舊對冷熱敏感。

痙攣僵硬
下肢僵硬的感覺依舊。

繼續觀察.....
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2010年6月20日 星期日

45hrs After Liberation treatment 術後45小時

身體的反應:

我可以站著小便了!!而且流量比以前大, 雖然還是會稍有中斷,不過整體而言有排空的感覺,完成小便的時間縮短了!!

手術之前:必須先坐在馬桶上像大便一樣用力一段時間,才能夠小便(第一階段),然後再站著接續第二階段的小便(流量不大,中斷次數多),沒有排空。

再之前的文章

手術恢復中~

中有提到:
左側頸靜脈有找出窄化點(窄化兩邊呈現不同的壓力差)
考量到左側頸靜脈窄化點非常靠近腦部,所以為了怕傷害到腦部,故只有擴張一部分的左側頸靜脈.

因為只有擴張一部分的左側頸靜脈,所以對於未來恢復的情形也並沒有任何太大的期望,只能夠靜觀其變,目前的改善就是排尿的部份。

相對於國外病友的分享,也有排尿障礙完全恢復的例子,所以,目前狀況和國外的情形一致!
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6/11一個ccsvi的會議,其中有許多醫師發表了支持桑柏尼醫師的結果

Important videos with the speeches of International doctors present in Ferrara to give support to Dr. Zamboni, June 11 2010

These are very important videos. You will be able to listen to the doctors that are supporting Dr. Zamboni's research in the United States and Canada. They are all amazed by Dr. Zamboni's work and his discovery! He deserves the Nobel prize! We all agree about this, right? :)
這些是非常重要的影片,你能夠透過影片知道這些醫師支持桑柏尼醫師的研究,他們都非常讚揚他的成果和發現,他應該得到諾貝爾獎。
This video is in Italian ONLY: 2010-06-11 Alessandra Ferlini - Genetica e CCSVI - CCSVI nella Sclerosi Multipla
因為會議是舉辦在義大利,所以這些影片包含義大利文和英文,

http://www.youtube.com/watch?v=gCzGU9TtTBw&playnext_from=TL&videos=JC5I2tOeWVI

To listen to Dr. Sclafani:

Part one: http://www.youtube.com/watch?v=VOK82ek5T1g&playnext_from=TL&videos=iI22wbP-KpY

Part two: http://www.youtube.com/watch?v=B4EN7hMY0XU&playnext_from=TL&videos=HHS5r6dcCFA

To listen to Adnan Siddiqui, State University of New York -- Buffalo: http://www.youtube.com/watch?v=PxT-ievwHBY&playnext_from=TL&videos=i5Z4QLtpPig

To listen to Sandy McDonald, Toronto South Medical Center Canada: http://www.youtube.com/watch?v=2jFubb3v2WE&playnext_from=TL&videos=CfKUhRK_ZP4


To listen to Dr. David Koff, from McMaster University Hamilton, Canada: http://www.youtube.com/watch?v=KgViBSPZoQM&playnext_from=TL&videos=MhGzzYsok-c

提供給病人和醫師們參考,有熟義大利文的可以幫忙翻譯一下喔^^
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又一位國外病友獲得重生 恭喜他

來看看手術前後的差異吧,"真的差很大喔"
影片包含:

CCSVI BEFORE手術前, 60 hours POST術後60小時 80 hours Post術後80小時 compilation Stairs爬樓梯的情形



CCSVI- 7 days post liberation 術後7天我的媽啊,太厲害了!



只有一句話!
傑克,這真是太神奇了!
走得輕快,上下樓梯越來越穩
大家快去檢查靜脈的情形吧!!
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2010年6月19日 星期六

手術恢復中~

經過了四個小時的手術,加上六個小時的固定不動,另我有點吃不消。

現在就等待傷口的癒合

以及身體告訴我是否有反應發生。

有關我的靜脈:

1. 兩邊的Internal Jugular veins both narrowing

2. Stenosis point in left Jugular vein was found 左側頸靜脈有找出窄化點(窄化兩邊呈現不同的壓力差)

3. Concern about damage to brain due the distance of stenosis point very close to the brain. Onlu part of left Jugular vein was inflated. 考量到左側頸靜脈窄化點非常靠近腦部,所以為了怕傷害到腦部,故只有擴張一部分的左側頸靜脈.

4. Azygos Vein shows no narrowing 胸腔靜脈沒有窄化現象。

5. 在針對右側頸靜脈注射顯影對比劑時,左腿同時出現一陣麻痺的感覺
而在針對左側頸靜脈注射顯影對比劑時,右腿並沒有特別的感覺

看來我的情況似乎更棘手... 再和醫師討論吧!
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A magic Angiography and Liberation journey 一段神奇的旅程

A magic Angiography and Liberation journey 6/18
一段神奇的旅程 (我永遠不會忘記這一天6/18)


Due to the 1st CCSVI studay in MS patient in Taiwan. All related doctors of Taipei Veteran General Hospital were focusing on it. As I said in last post:
因為是台灣第一次在MS病患上發現CCSVI的情形,求謹慎起見,將在血管攝影(Angiography)分別於動脈以及靜脈部份作全面仔細的檢察。看看是否會有其他的腦血管問題。

也因為是我個人的第一次,也是榮總醫師群的第一次,更是台灣的第一次,懷著病友的期待和祝福上了手術台(table)心中是平靜的。所以每位醫師都非常的兢兢業業。原本的排程是先做動脈以及靜脈血管攝影(Angiography)等資料判讀之後,再進行氣球擴張。也許是我有點迫不期待,也或許是不希望在短時間之內被穿刺兩次,所以和醫師討論之後,我希望能夠在檢查過程中能夠氣球擴張。

所以手術的過程長達了近4個小時(辛苦了神經放射科張醫師以及他所領導的每位醫師),一般而言國外的例子來看多為一小時就可以結束(因為國外只做 Venography and venoplasty)只需從靜脈穿刺即可,而不需要從動脈。

而且術後恢復的時間也比較短(4 hrs), 少於動脈的6hrs.

所以我昨天呈現了將近10小時的全身不動的狀態下,其能獲得較好的傷口癒合,我必須說:真是很難熬.....

Great news 好消息:正面的消息
1. 我的例子已經證實了MS病患中Internal Jugular Vein 具有窄化的現象(Azygos Vein ok!)。所以大家可以盡量做檢查,看看倒底靜脈窄化的比例是否超過 50%!

2. 台灣榮總已經首先為MS病友展開這方面的服務,病友們可以放心,在蔡主任,胡主任,以及放射科張醫師的聯合關懷之下,病友應該會獲得很好的照顧。

3. 我已經做過動脈和靜脈攝影的比較了,我想對於以後做手術的病友應該可以不用再做動脈攝影。

手術完後,覺得Relief~ 若是能夠藉由我的一小步來完成台灣對CCSVI的一大步甚至能夠讓其他病友症狀好轉的話,我心已無憾。

有點累, 我該去休息了。
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2010年6月18日 星期五

I am ready~

I am ready for Liberation/ Reborn!
我已經準備好了!

No matter the result is, I will always keep walking.
無論結果如何,我都會繼續的走下去!

And before the treatment, I have to thank all the doctors devoted themselves to my case(A possible cure for MS patients or potetial stroke patients)!
在手術之前,我衷心萬分的感謝榮總神經整個團隊對於CCSVI的重視,結合腦血管,放射科,及罕見神經疾病的所有醫師。

Special thanks to
Dr. 胡漢華,Dr. 張豐基,Dr. 蔡清標
以及相關的醫療團隊同仁們
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又一個病人的術後成功案例

兩段影片,分享他的喜悅給大家!
my liberation part 1

my liberation part 2

恭喜他!
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Ruth's CCSVI treatment in Bulgaria(保加利亞)

Ruth's CCSVI treatment procedure by Dr. Ivo Petrov in Tokuda Hospital - Sofia, Bulgaria

看看Ruth的情形!

為他恭喜!

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2010年6月17日 星期四

Before Angiography and Liberation 在血管攝影和氣球擴張之前

Before Angiography and Liberation
在血管攝影和氣球擴張之前

必須服用Plavix或和aspirin(Bokey阿斯匹靈) 主要用來預防血栓的形成

Clopidogrel (Plavix®)為一新型血小板凝集抑制劑 (platelet aggregation inhibitor) ,是屬於 thienopyridine derivative 類的抗血小板藥物;主要是藉由強而專一的抑制ADP與血小板上之感受器(platelet receptor)相結合,為一種競爭性不可逆的作用;其機制是經由阻斷ADP接受器,以抑制血小板的凝集。

因為過敏或腸胃不適不能使用aspirin的住院病人,應給予clopidogrel

於進行穿皮侵入性治療前3-24小時服用Clopidogrel 300 mg
當侵入性治療完成,服用clopidogrel 75 mg觀察。

國外的病友術後也有服用aspirin

給要做靜脈擴張術的病友資訊~
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Status report 目前情形

榮總神經部團隊,為求謹慎起見,將在血管攝影(Angiography)分別於動脈以及靜脈部份作全面仔細的檢察。看看是否會有其他的腦血管問題。
所以會同時進行Arteriography 和 Venography

請參考以下資料:
頸動脈及椎動脈血管攝影說明

(一) 什麼是頸動脈及椎動脈血管攝影檢查?
頸動脈及椎動脈血管攝影檢查是經由鼠蹊部的股動脈或其他週邊動脈穿刺後,在放射線透視監視下,把導管導入頸動脈近端,再注射對比劑,並同時用快速間隔照X光,藉以攝取顱內或頭頸部血管內腔的影像及血流情況。當完成頸動脈血管攝影後,可再把導管放入椎動脈近端,同樣注射對比劑及照相,以得到不同區域的顱內或頭頸部血管影像。

因為鼠蹊部要穿刺,所以必須先對穿刺部位做一清潔和清除雜草的動作!

(二) 頸動脈及椎動脈血管攝影檢查的優缺點:
用此法所得到的血管影像解析度高,並能觀察血流由動脈到微血管及到靜脈的流動情況,故能精確偵測血管的病變,包括狹窄、阻塞、動脈瘤、動靜脈畸形、腦瘤等。並能觀察動脈阻塞後,側枝循環發展的情況。對血管性病變的診斷、治療及追蹤助益甚大。目前雖然有電腦斷層攝影及磁振造影等方法可得到顱內或頭頸部血管影像,但所得到的血管影像解析度較低,無法觀測微細血管病變,同時也不能顯示血流之動態。所以頸動脈及椎動脈血管攝影檢查是顱內或頭頸部血管病變,尤其是動脈瘤、動靜脈畸形、動脈狹窄、血管炎性病變等不可缺少的檢查。

(三) 適應症:
血管狹窄、血管阻塞、動脈瘤、動靜脈畸形、血管炎性病變、腦瘤等血管病變。

相同的,若是靜脈的部份,就必須從
鼠蹊部的股靜脈穿刺後,在放射線透視監視下,把導管導入頸靜脈近端,再注射對比劑,之後同上 .........

Which means I have to stab 1 Artery and 1 Vein at the same Angiography!
我在做
血管攝影檢查的過程中,必須在動;靜脈各深入一導管(包含氣球)(可能是先後)
而在檢查的過程中,決定是否即時予以血管擴張的治療。(我當時會是清醒的,所以能夠看到即時影像)

也因為術後為了傷口的癒合,必須平躺至少6小時(因為動脈的緣故), 觀察一天, 所以在無法坐起的情形下,必須施打點滴維持營養和水份的供給。

但是
因為術後必須平躺至少6小時,所以必須在床上用尿壺小便,因為我無法做到(MS造成我的尿道括約肌無法正常作用),所以必須插導尿管(加了這一次,我人生插導尿管的經驗值就達5次之多)。

希望這是我最後一次插導尿管 !
畢其工於一役! 希望我一次就完成!

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2010年6月16日 星期三

Patient! Be patient! 病人,請耐心!

我發現了一個很有趣的英文字
"Patient" 代表病人,也同時代表耐心

我是病人, I am a patient.
2年來,竭盡我所能的蒐集資料,評估,展開行動,過程都是用迫不期待的心情來面對。
臨屆關鍵時刻,耐心的等待,也是必要的!

等待著醫師們仔細的討論,評估和行動,

我想很多人也和我一樣 迫不期待的想要趕快知道結果並且被解放,urge to be liberated~

醫師們很仔細的審慎的評估,就是希望病人在整個過程中不會有任何的危險。

所以,有時候,我們病人也需要保持我們的耐心。我們能有更完善的照顧。

So, let patients be patient. We can have the compact and complete care!

這不容易,不過一切都會過去的。Let your mind be peaceful!
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國外有一位醫師已經幫20位MS病患做過手術

'Liberation procedure' for multiple sclerosis sparks debate

Nasha Smith knows that skeptics would say her multiple sclerosis got better after an unorthodox treatment at Lankenau Hospital simply because she believed it would.

But the 40-year-old Reading resident also knows the "placebo effect" can't explain her transformation. Practically overnight, she went from being homebound - disabled by foot numbness, fatigue, balance problems, and painful bowel spasms that left her incontinent - to being able to complete a three-mile fund-raising walk for MS.

"I know there's a lot of controversy about this, but I don't know why," Smith said. "The procedure was so simple, yet life-changing."

The procedure, balloon angioplasty, is routinely used to open clogged heart arteries. But MS patients around the world are seeking what they call "the liberation procedure" to widen veins.

Groundbreaking research by an Italian vascular surgeon suggests that narrowed veins are common in MS patients, causing blood to drain improperly from the brain.

For a disease long blamed on out-of-control immune cells that attack the central nervous system, the blocked-vein theory is a radical departure - one that experts say remains speculative. To begin to confirm it, the National MS Society and the MS Society of Canada on Friday awarded $2.4 million to seven groups. They will study the diagnosis and frequency of poor vein drainage but will not treat patients who have the problem.

"We certainly feel the patients' sense of urgency," said Patricia O'Looney, vice president of the National MS Society. "But there are conflicting reports from scientists. The appropriate action is to bring clarity to the question" of whether veins play a role.

Patients are not waiting for more clarity. Dissatisfied with the marginal benefits and serious side effects of standard therapies, they are turning to interventional radiologists like Lankenau's Joseph Bonn, who treated Smith.

At least, until hospital lawyers step in.

In April, they ordered Bonn to stop performing balloon angioplasty on MS patients pending approval by officials at the Wynnewood hospital.

Zamboni's discovery

It's not clear who coined the catchy term liberation procedure, but it stems from the work of Paolo Zamboni, a vascular specialist at Italy's University of Ferrara.

While trying to help his wife's MS, he discovered that the three main veins that channel blood from the brain back to the heart - the jugulars and the azygos - are often twisted, bent, compressed, or otherwise constricted in MS patients. He gave this abnormality a distinctly uncatchy name, "chronic cerebrospinal venous insufficiency," or CCSVI. His first paper on the condition was published only a year ago.

Neurologists, the specialists who usually treat MS, as well as others, see holes in his out-of-the-box thinking.

For one thing, poor vein drainage doesn't bother everyone who has it. Zamboni found it in the majority of MS patients, and few of the healthy people he checked. But then he and University of Buffalo neurologist Robert Zivadinov did a larger study of 500 patients. CCSVI showed up in 60 percent with MS, 43 percent with other neurological conditions, and 22 percent of healthy controls.

Another thing: Not all MS patients get better after angioplasty. And the veins often re-narrow within a year. Zamboni found this happened in up to 47 percent of jugulars, although azygos veins usually stayed open.

Stanford University researchers tried to combat the re-narrowing with stents designed to prop arteries open. One patient needed open-heart surgery when the stent dislodged, and another died of brain bleeding while taking a blood thinner prescribed with the metal devices.

Still, Zamboni's maverick work offers a neat explanation for the central mystery of MS: why immune cells run amok, attacking nerves in the very body they are supposed to protect.

Zamboni found that blood backs up in the brain, or "refluxes," as it creates new drainage patterns to circumvent the blocked veins. Iron settles out of refluxing blood and, like toxic pollution, irritates delicate brain tissue. In theory, this signals immune cells to seep out of the blood and try to clean up the mess.

Normally, vessels in the brain are impermeable, so immune cells can't access that all-important organ. But the constricted veins develop high blood pressure, making them stretch and spring microscopic leaks. In theory.

Angioplasty techniques are so well-established for treating vessel abnormalities that MS patients feel they are being discriminated against. In their view, they have little to lose and much to gain from trying to get better blood flow.

CCSVI is diagnosed with ultrasound imaging, followed by special X-ray and MRI imaging. Balloon angioplasty, performed under sedation, involves inserting a tube through a small incision, threading it deep into the vein, and inflating the balloon tip to expand a narrow spot. Serious complications - rupturing the vein or a dangerous blood clot - are rare.

Bonn, who does procedures on heart, kidney, and cancer patients, knew virtually nothing about MS until two months ago. Then, at a medical convention, he vaguely heard about the blocked-vein theory and made a note to learn more. Just two days later, he saw Janet Grieco, 53, an MS patient who had called out of the blue seeking treatment for CCSVI.

"He pulled out his BlackBerry and showed me the note he made at the convention," the Chalfont resident recalled.

Soon, Bonn was getting calls from MS patients near and far as their online community added him to the list of doctors willing to help.

He treated only three MS patients, including Smith, but the results were good.

Relief from headaches

Grieco had suffered from chronic migraines, balance problems, and fatigue that was intensified by insomnia.

"By the time I got to recovery after the procedure, I didn't have a headache," she said. "When you have a headache for three years and then it's gone, it's remarkable."

That day, she strolled her neighborhood with her husband and stopped needing her nightly sleeping pill.

Denise Graff, 43, of Somerset, N.J., experienced a phenomenon that other patients have reported.

"My toes were like icicles" because of foot numbness, she said. "During the procedure, I could feel them warm up just after he ballooned the first vein."

Bonn's fourth patient, Paulette O'Leary, 41, of Toronto, was minutes from being wheeled into the angioplasty suite when the hospital lawyers interrupted.

"I don't know who was more shocked - Dr. Bonn, or me and my husband," O'Leary said.

Bonn is now designing a clinical trial, the gold standard for studying safety and effectiveness. Patients with CCSVI would be randomly assigned to balloon angioplasty with - or without - the inflation that opens veins. The trial must be approved by the hospital's review board.

As a scientist, Bonn sees the need for rigorous studies. But he also understands patients' frustration.

"They suffer for decades on a slow downhill course," he said, "with few options in terms of medications or procedures. So this has been a real roller-coaster ride for them."

O'Leary stayed on the roller coaster. Last month, she paid $13,000 for liberation at Albany State Medical Center, where a trial was already under way.

Now, she said, she no longer uses a cane, clings to a wall to climb stairs, or suffers from incontinence.

Balloon angioplasty is not a cure, not even close, she said. But it offers quality-of-life improvements that are impossible with any of the seven approved MS drugs, as well as a new one, Novartis' fingolimod, that was recommended for approval last week. All the drugs modify the immune system.

Still, as patients travel to India, Bulgaria, Poland, and other countries for angioplasty, they may underestimate the skill and savvy it requires.

"I did my first MS patient at the end of last year. It didn't work out too well," said Salvatore Sclafani, chair of radiology at SUNY Downstate Medical Center in Brooklyn. "The anatomy was much more complicated than I expected. I did the balloon, but she developed a [blood clot]. I sent her home on anticoagulants and said, 'I'll try again after I get more experience.' "

Since then, he's done about 20 patients - a few with "miraculous" results - and become beloved for contributing to an online MS forum.

Indeed, when he was ordered a few months ago to stop doing the procedure outside of a clinical trial, "there was an outpouring of grief, and of compassion for me," he said. "Then they got angry. So we started to dialogue about the trials and what we want to learn from them. Now they're participating in the development of the research.

"I was ready to retire," added Sclafani, 63. "But this has touched me. Now my practice will be all MS."


Contact staff writer Marie McCullough at 215-854-2720 or mmccullough@phillynews.com.

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MS in Hong Kung 香港約有三百多名MS患者

多發性硬化症五成或癱瘓
2010-6-15


圖:陳灌豪呼籲多發性硬化症患者及早求醫\本報攝

【大 公報訊】實習記者陳珮婷報道:

多發性硬化症是神經系統疾病,嚴重患者會全身癱瘓及失明。香港大學腦內科臨床助理教授陳灌豪估計現時香港約有三百多名患者, 他說,及早診斷可緩解病情,惜每月的藥費昂貴,最高可達八千元。因此病人組織建議檢討現時又高又苛刻的藥物資助申請門檻。

多 發性硬化症是中樞神經系統疾病,患者的免疫系統會攻擊神經線的髓鞘和軸突,使患者的神經發炎及硬化,導致神經訊號傳遞速度減慢百倍。病徵包括視覺模糊、吞 嚥困難、語言及協調障礙及四肢無力等,徵狀一般會維持五至七日。現時全球有超過二百萬名患者,本港每十萬人就有五點五名患者,發病率在二十年間上升超過五倍

陳灌豪表示,約八成半患者初發病時,病情相對輕微,但若經歷多次復發,有大約五成患者或會嚴重殘障如全身癱瘓及失明等。至今,多發性硬化症的成因仍然不明,亦沒有根治方法,只能靠用藥減少復發機會。

年約二十歲的鄭小姐(化名),在○八年首次病發,感到視力模糊及頭暈。她雖已順利畢業,但仍擔心因病不獲聘用。她說,現時每個月的治療費用為七千元,增加了家庭的財政壓力。

調 查發現,超過六成七多發性硬化症患者因病影響工作。香港肌健協會組織幹事蘇美英稱:「患者可向醫管局轄下的撒馬利亞基金申請藥物資助,但是門檻太高;批出 藥物資助時,又要考慮患者家庭的總收入,而非患者的個人經濟狀況。」她建議政府可提升對多發性硬化症患者的配套,例如調低藥物資助門檻,只考慮患者的個人 經濟狀況;並對特別個案行使酌情權。

[都市日報]

多發性硬化症是一種能嚴重影響患者活動機能的神經系統疾病,不僅影響患者五感,嚴重更可致身體殘障,該症患者的數目有上升趨勢。

港大內科學系腦內科臨牀助理教授陳灌豪醫生指出,多發性硬化症病發率由89年的每10萬人有0.88名患者,升至去年每10萬人5.5名患者,現時約有300至400名患者。
早期病徵不明顯。
多發性硬化症的早期病徵並不明顯,患者在發病時往往會出現疲倦、肢體無力、感覺異常、視力模糊、認知及語言障礙等病徵,但由於在患病的不同時期 也有不同的發病模式及症狀,因此病人很容易出現延醫的情況。若疏於治理,患者有機會出現嚴重且無法逆轉的身體殘障,如全身癱瘓、需坐輪椅、甚至失明,嚴重 影響就業能力及日常生活。

香港的病友為數不少呢!為台灣的1/3地狹人椆的香港,是否因為壓力而造成此現象呢?


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又一位病人Isayel赴德國法蘭克福作擴張手術

Isayel — 西元2010年06月12日 — 德國首次作此手術的病人
Two days BEFORE ccsvi/veinoplasty in Frankfurt (Germany)手術前2天


Four days AFTER my ccsvi / veinoplasty in Frankfurt (Germany)手術後4天


以下是病人的感覺:
I had the treatment on June 10th,2010 in Frankfurt (Germany, Pr M.Vogl, working with Pr Haacke,Sclafani,Zamboni...).

Angioplasty: balooning in my left vein (thiner than the right one). Lasted 30mn, then 4h rest laid in bed, without moving my right leg. After that another check screening (5 mn) of my neck. Endly a quick briefing with Dr Vogl who gave me a survey to fill in during the next 3 months. He said I am part of a pilot study...He asked me to visit him in December 2010. He gave me the images of the whole surgery.

I fill really different. Before I was an elephant and now I am a "gazelle" ;-). I can stand up and sit down more easily, my balance is better. I do not suffer pain in my back. I had headache during first night and the morning after. I only had to take baby aspirin during 6 months daily. I am confident in further improvments, I will post them as well.

手術前我覺得自己像隻大象,手術後像羚羊
我可以更容易的站起來和坐下
平衡更好了
我的背不再痛了
手術後第一天晚上和隔天早上有頭痛。
之後只要服用阿斯匹靈。


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2010年6月13日 星期日

中風吹向六年級

從Google搜尋到的文章:

別以為只有老人家才會中風,二、三十歲就中風 的年輕人,已愈來愈多。
文.林芝安 2007/01 康健雜誌 98期

在台北榮總162病房(中風病房)擔任護理長的林春梅,18歲即進入榮總工作,至今已30年,最近四、五年來她觀察到,中風有年輕化的趨 勢,男女皆然,有些才20、30多歲就中風了。
台北榮總神經內科資深主治醫師陳昌明也發現,以前一年頂多遇到一、兩位50歲以下的中風患 者,「現在每個月都有好幾個。」

很多年輕人中風多有家族史,但自認年輕,不注意警訊,林春梅護理長不禁搖頭,「有人根本不知道自己有高血 壓、糖尿病。」
壓力也是年輕人中風常見原因之一,林春梅印象深刻有位男病患才29歲,沒有高血壓病史卻發生出血性中風。

他連開兩家連鎖便利商店,經營管理的壓力過大,常常失眠、長期抽菸,免疫力持續下降。當免疫力不好,血液循環自然差,血管容易硬化,在毫無警訊情況下中風了, 左半邊癱瘓。為了剛出生沒多久的寶寶,他憑著意志力忍受疼痛,很認真復健。
腦中風長年來盤據台灣十大死因,根據衛生署統計,2005年因腦 血管疾病死亡人數達13139人,高居十大死因第二,僅次於癌症。

台北榮總神經血管病科主任胡漢華教授曾進行台灣首次腦中風發生率與盛行率 比較研究,結果顯示,台灣腦中風每年發生率3~5萬人,盛行率10~15萬人。都會地區35歲以上中風盛行率每一千人有18.9人,鄉村地區則為13.0 人。都會區中風的年輕人比鄉村地區高。

這項研究指出,台灣腦中風死亡率雖有趨緩跡象,發生率卻不降反升。甚且,發生小中風的機率有上升趨勢,卻不被國人注意。即使連衛生單位至今才開始做 全國中風登記,約一年後才能呈現較完備的資料。

根據統計,20~50%的腦中風患者在中風之前,曾經發生過暫時性腦缺血,即俗稱的「小中 風」。小中風患者日後發生中風的機率是一般人的10倍
國民健康局研究也顯示,台灣地區65歲以上,每12人就有1人發生過小中風,如果把 年齡降到40歲以上,那麼平均每9人就有1人發生過小中風。

中風跟其他疾病最大的不同在於,必須花費相當時日做復健,如果一個社會的中壯年 人口愈來愈易腦中風,人口出生率又不斷下降,難以想像將對社會的生產力與國力造成何等影響。
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2010年6月12日 星期六

2001年榮總就成立了台灣第一個以治療急性腦中風為主的加護病房

從Google上查到2001年的資料:

報告人

胡漢華主任

翁文章醫師

鄧木火主任

張豐基醫師

現職(2001)

神經血管病科主任

神經血管病科主治醫師

神經放射線科主任

神經放射線科主治醫師


上面有各醫師的連結!請善加利用~

台北榮民總醫院近年(2001)來成立「腦中風加護中心」為台灣第一個創設治療急性腦中風的加護病房,除了具備完善的設備,加上堅強的腦中風治療小組成員,提供國內罹患急性中 風最先進及最有效的治療服務。主要收住病患對象為:使用血栓溶解劑或放射科施行頸部動脈支架植入後需密切觀察者,有進行性腦中風或發作頻繁之暫時性腦缺血,需使用抗凝血劑者亦為收住院對象。

腦中風是常見的疾病,好發於中老年人。大多為突然發作,造成肢體運動、言語或神智的障礙。其死 亡率仍占十大死因的第二位,亦為造成殘障的主要原因,成為家庭、社會的重大負擔,目前對付腦中風疾病是預防重於治療。腦中風的預防,除注意去除危險因素 (如高血壓、糖尿病、心臟病、高血脂)外,可使用藥物(如抗血小板凝聚劑或抗凝血劑),亦可使用外科手術(頸動脈內膜摘除術)。近年(2001)放射線科或心臟科醫 師可使用血管支撐架(stent)撐開狹窄的血管,以防腦血管阻塞但因放置支架於頸部動脈後半天至一天內,有可能發生暫時的血壓、心率不穩,以及腦中風,需有一加護病房做緊密的觀察。

近年來針對急性腦梗塞患者已有比較有效的治療藥物,即血栓溶解劑。它可把阻塞的血管打通而改善 症狀,但必須在症狀發作三小時內用藥,否則較會有腦出血的併發症。使用血栓溶解劑後亦需緊密觀察患者的各種狀況,若有腦出血病情惡化,則需馬上會神經外科 做開顱手術,否則死亡率更高。目前歐美使用之血栓溶解劑,衛生署尚未通過使用於腦梗塞患者。台北榮總神經血管病科正進行一項國人自製的第二代血栓溶解劑的 試驗,受試病人均需住院於腦中風加護中心做緊密的觀察。

本院目前(2001)已完成四十六例頸部支架的放置,收住於本加護中心,成效相當良好。亦有三位接受血栓溶 解劑的試驗,均未有出血現象,且恢復情況亦很好。本院腦中風加護中心已為急性中風患者提供最好的設備,且品質最優秀的醫療服務。

原文閱讀:http://www1.vghtpe.gov.tw/msg/%E8%85%A6%E4%B8%AD%E9%A2%A8%E5%8A%A0%E8%AD%B7%E4%B8%AD%E5%BF%83%E6%96%B0%E8%81%9E%E7%A8%BF900910.htm
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原來早在9年前,榮總就已經有過如此多針對急性中風的頸動脈支架擴張手術的完成經驗,那麼我想,對於靜脈擴張手術一定沒問題,I believe the team!
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北美共7個單位多發性硬化症CCSVI研究獲240萬美元資助

Over $2.4 Million Committed to Support 7 Initial CCSVI Grants to Determine the Role of CCSVI (Venous Insufficiency) in Multiple Sclerosis Disease Process

加拿大與美國的多發性硬化症協會獲得240萬元研究補助金,以便驗證有關多發性硬化症成因的一項新理論是否正確。
加美多發性硬化症協會周五 聯合宣佈,7個研究團隊將分享這筆資金,研究是否慢性腦脊髓靜脈血液不足(CCSVI)引起多發性硬化症(Multiple Sclerosis,簡稱MS),或是該病加重的原因。

加美多發性硬化症協會將合作,設立專家評審團,檢討研究計劃,以加速研究過程及避免重複。加拿大是全球多發性硬化症發病率最高國家之一。7項研究計 劃中的4項將在加國進行。這4項計劃所獲得的撥款總數為兩年之內大約700,000元。

另外3項美國研究將獲得170萬元撥款。

列出這7個單位:

The funded teams, which include an integration of MS and vascular experts, are led by:

  • Dr. Brenda Banwell, The Hospital for Sick Children, Toronto, Ontario: studying vein abnormalities in children and teenagers who have MS, and healthy controls of the same age. The team is seeking to determine whether the veins are abnormal at an early age among pediatric MS patients. These findings will add additional depth to studies of CCSVI in adult MS. More information: http://www.nationalmssociety.org/research/intriguing-leads-on-the-horizon/ccsvi/ccsvi-study-by-banwell-team/index.aspx
  • Dr. Fiona Costello, Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta: examining a cross-section of people with MS compared to other neurological diseases and healthy volunteers. The team is seeking linkages between vein abnormalities and different aspects of MS activity and tissue damage to gain insight into the significance of differences in vein drainage and their implications for the future treatment of MS. More information: http://www.nationalmssociety.org/research/intriguing-leads-on-the-horizon/ccsvi/ccsvi-study-by-costello-team/index.aspx
  • Dr. Aaron Field, University of Wisconsin School of Medicine and Public Health, Madison: using magnetic resonance (MRI) scans to generate detailed images of the head and neck veins in people with early and later MS, healthy volunteers, and controls with other neurological conditions. This team is also using the ultrasound techniques originally used by Dr. Zamboni. If they obtain similar results as those published by Dr. Zamboni, it would represent a powerful confirmation of the CCSVI hypothesis and help lead the way toward trials of appropriate treatment. More information: http://www.nationalmssociety.org/research/intriguing-leads-on-the-horizon/ccsvi/ccsvi-study-by-field-team/index.aspx
  • Dr. Robert Fox Cleveland Clinic, Cleveland: studying people with MS or who are at risk for MS (CIS) and comparison groups including healthy volunteers and people with brain atrophy (shrinkage) from Alzheimer's disease. This team is using the ultrasound techniques originally used by Dr. Zamboni, as well as magnetic resonance studies of the veins (MR venography), MRI scans of the brain, and clinical measures to determine MS activity and atrophy. They are also examining neck and spinal cord tissue from MS patients at autopsy to provide a tissue-based evaluation of CCSVI and its possible relationship to MS. More information: http://www.nationalmssociety.org/research/intriguing-leads-on-the-horizon/ccsvi/ccsvi-study-by-fox-team/index.aspx
  • Dr. Carlos Torres, The Ottawa Hospital, University of Ottawa, Ontario: employing powerful MRI technology to explore vein anatomy and assessing for iron deposits in the brains of people with MS and in age-matched healthy volunteers. These studies work towards mapping out normal variations in brain vein anatomy and providing insight into CCSVI in MS. More information: http://www.nationalmssociety.org/research/intriguing-leads-on-the-horizon/ccsvi/ccsvi-study-by-torres-team/index.aspx
  • Dr. Anthony Traboulsee, UBC Hospital MS Clinic, UBC Faculty of Medicine and Dr. Katherine Knox, Saskatoon MS Clinic, University of Saskatchewan: studying the prevalence of CCSVI in people with MS and controls without MS, using catheter venography, ultrasound, and magnetic resonance venography. Unique to this study is the inclusion of family members, such as identical twins of MS patients who have not developed MS, in control groups. They also hope to verify the usefulness of techniques that would make it easier to screen for CCSVI. More information: http://www.nationalmssociety.org/research/intriguing-leads-on-the-horizon/ccsvi/ccsvi-study-by-traboulee_knox-team/index.aspx
  • Dr. Jerry Wolinsky, University of Texas Health Science Center at Houston: replicating the ultrasound methods used by Dr. Zamboni to investigate the association of CCSVI with major clinical types of MS and in non-MS control groups. The team is also testing whether other imaging methods can confirm the ultrasound findings, while identifying the most reliable technique to screen for CCSVI. More information: http://www.nationalmssociety.org/research/intriguing-leads-on-the-horizon/ccsvi/ccsvi-study-by-wolinsky-team/index.aspx

意大利醫生桑伯尼(Paulo Zamboni)的妻子患有多發性硬化症,他在研究中發現,一些多發性硬化症病人存在頸部靜脈阻塞的現象(CCSVI)。

加拿大病患的發聲終於獲得了重視!! 恭喜他們!


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信仰! Faith! Believe!

好不容易,經過了這段有點久又不算久的時間,誠如歌詞所述一樣,承受著風浪,拖著傷痕累累的身軀,揮動著流血的翅膀,撐著已快斑駁脫落拐杖的手把,一步步的走過來,學到了人生莫大的教訓和上天要讓我學習的功課。

人之所以為人 就因為人有愛/會愛/能感受/也能夠感受愛
人之所以為人, 因為人會做選擇, 雖然不一定選擇就是對的
也無所謂對或錯,
人之所以選擇,是因為自己相信
相信什麼? 相信自己願意相信的!

在電影駭客任務(The Matrix)中有一段對白:
Do you still believe prophecy ?
No, but I believe him!

Believe 是人的一個最重要的元素
No matter what you believe~

Believe it or not, I believe Love. Love is not just a word!

So, what do you believe?


向前望 看見火光
昂起頭 挺起胸膛
揮舞著 我流血的翅膀
愛是我永遠的信仰
迎著風 踏過浪
心臟(我們) 更加堅強
聽我唱 那生命的真相
愛就是我們的信仰
痛和傷 又能怎樣
心臟(我們) 更加堅強
聽我唱 那生命的真相
愛告訴我就是這樣
愛就是我們的信仰
迎著風 踏過浪
讓心臟 更加堅強
聽我唱 那生命的真相
愛就是我們的希望
迎著風 我踏過浪
心臟(我們) 更加堅強
聽我唱 那生命的真相
愛就是我們的希望
愛就是我們的力量
愛就是我們的希望
愛就是我們的信仰
啦啦......
揮舞著 我流血的翅膀
愛是我 永遠的信仰
迎著風 我踏過浪
心臟(我們) 更加堅強
聽我唱 那生命的真相
愛就是我們的希望
啦啦......
揮舞著 我流血的翅膀
愛是我 永遠的信仰
啦啦......
愛就是我們的信仰

回顧之前對自己所說的話,心情依舊,看著去年的文章:

全世界都在找尋MS的成因和解藥

其中自己對自己說了一段話:
我, 也在尋找解藥......不論解藥是何種形式, 藉由我所具備的能力和知識, 甚至是直覺, 我都一定要找出來!! 標題下了:我要當神農氏
如今也真的找到了可能的方向,就讓我實現著個夢想,完成這個逐夢的過程吧!

揮動著流血翅膀的我,將會像聖鬥士星矢當中的 Phoenix 浴火重生,再度展翅翱翔
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給不想手術,想服藥的病友

美國FDA顧問委員會一致建議核准FTY720上市
06/11/2010 06:22AM

美國FDA顧問委員會建議核准Novartis的FTY720 (fingolimod)上市,治療復發的多發性硬化症。
FDA有選擇權,可諮詢 一位顧問委員會成員的審查意見,以決定是否核准這種新藥上市。委員會一致表決支持建議核准FTY720上市,因FTY720治療患者時,展現安全性與療效。

台灣需要再等等~


你永遠可以選擇哪種方式是適合你的。 物理方式還是化學方式

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英國已經正式開始CCSVI檢查和治療了

It's starting! - CCSVI Scanning & Treatment about to start in UK
英國已經正式開始CCSVI檢查和治療了

CCSVI Dopplar Scanner


We are pleased to announce that we have now taken delivery of our Premium Echo Doppler Scanner System.
This scanner has been specially designed by Professor Zamboni and his team for the diagnosis of CCSVI. We are also proud to be the first clinic selected in the UK to have this equipment and we have been told that currently no other establishment in the UK and Ireland is using this sophisticated equipment.

Professor Zamboni devised five specific protocols for the detection of CCSVI and this equipment is programmed with the algorithms created to aid the analysis of these five protocols. These special measurements available with this equipment have recognised the needs of this type of scanning - and the fact that existing scanners may struggle without the specific measurements required.

More Good News!
We can also announce that within the next seven days we will be offering appointments for Doppler Scanning & Doctors Consultation to a large section of our waiting list. These will be available during September and October. We are also in advanced discussions with other leading Doctors, at prestigious medical facilities, to replicate the treatment protocols and standards that we are establishing in Scotland. This will enable us to have an increased capacity and reduce our waiting lists even sooner. More information will be given as soon as we have it available.

If you are not already on our waiting list, we strongly recommend that you reserve your place now. Click here for more information.

Testing and Procedures

If we find patients are demonstrating that some stenosis is present, our Doctors will discuss this with you and possibly recommend transfer to one of our Partner clinics; where a CT Venogram will take place to find the precise location of any narrowing, for intervention if necessary.
As part of the on-going research, patients will also be invited to have an MRI Brain scan (at no extra charge). This will then be repeated in six months when patients return for their follow-up Doppler Scan.

Details have also been finalised with our Partner clinic in Scotland for the CT Venogram, MRI Brain scan and Venoplasty procedure. Starting in August we aim to have the whole procedure from initial Doppler Scan completed within 3-5 working days. For those with appointments before August; the timescale might be slightly longer as we begin to fit all the procedures together.

Transport & Accommodation
We have been in discussion with a company who is interested in providing a bespoke transport service for our CCSVI patients, to and from hotels and clinics; in most cases for less than the cost of regular taxis. We expect this will be very popular, especially as they will have specially adapted vehicles to ensure that those with mobility difficulties are catered for.
For those people requiring information on accommodation in the area, we will have details on a number of hotels that we have used in the past. However we do strongly recommend that you search around on the internet as some excellent offers can be found with a bit of research.
More information on the transport facility and accommodation will be available on our website, as soon as we have it, with links through to them for booking. Please make all your arrangements direct with the companies concerned.

CCSVI Conference
CCSVI is one of the most talked about topics in medicine at the moment with twelve articles published in medical journals in April alone.
We have started preparations for a CCSVI conference at Glasgow in November 2010. This will bring together all the leading people in the world of CCSVI. It is vital to be involved in an international collaboration to collect similar data to strengthen the case for CCSVI. We are already working with these leaders to put this in place.

Contact Us:
Phone: 0800 027 4969
Email: Click Here
www.essentialhealthclinic.com
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2010年6月10日 星期四

Azygos Vein 胸腔靜脈的角色不容忽視

國外有一位加拿大病友Dawna在做了CCSVI "Liberation treatment"之後,情形沒有特別好轉,病人認為:在手術過程當中,Azygos Vein 胸腔靜脈並未被檢查,而且只有左邊的Internal Jugular vein 被擴張(超音波檢查當中,已確認兩側的頸靜脈狹窄),所以術後的情形並未如其他病友來的好,請見以下:

5/20
In her case, the doctors found that though preliminary Doppler results indicated that she had blockage on both sides, only one side would be venoplastied. Their reasoning was that there was sufficient blood flow on one side during surgery while the other was blocked. After the venoplasty, doctors indicated that there was better blood flow in the vein, post surgery. After being moved to her bed, Dawna's hand were warm- something that hasn't been for some time. This was the good news so far. However, Dawna was in a lot of pain from the surgical site in her groin.

(理由有點奇怪...為何不同時把兩邊都擴張?)

6/9
Update on Symptoms:
  • Continued numbness on right side (and left arm)
  • Body feeling constantly achy in the bones
  • Weakness in my legs and especially arms & hands
  • Right leg extremely sensitive to touch
  • Bladder issues continuing
  • Extreme fatigue
  • Tingling throughout my body, much like I'm being poked with tiny needles
  • I cannot bend my arms or legs for more than a few minutes without losing some circulation in them. ie. if I sleep with my arm bent at the elbow, my hand will become cold.
On the improvement side:
  • Limp is still gone
  • hands still fluctuate between cold and warm
I am hearing of so many people receiving treatment for CCSVI, and having their azygos vein checked and treated. I am not even sure that mine was looked at! I felt so great the first week post-treatment, where my left vein was ballooned....
It is so difficult to just take this one day at a time .. waiting to see if I physically improve. I have had to stop reading people's stories of their Liberation .. it's just so hard to constantly see people have these miraculous recoveries, while mine seems to have stagnated. Does treatment of the azygos vein mean the difference between increased recovery and plateaus? Would I have had greater recovery if my azygos vein had been treated? I wish I had the answers.


Dawna
迫切的想知道,是否Azygos Vein 胸腔靜脈的擴張對於復原情形扮演著重要的角色,是否
Azygos Vein 胸腔靜脈的擴張會讓他更好?

更多閱讀:請見:
Life and Liberation

所以,若可能的話,在檢查或手術過程當中,一定要做到同時把 Jugular veinazygos vein一併處理,才不會有類似Dawna的case發生。

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2010年6月9日 星期三

MS patients eagerly pursue their ‘liberation’

Controversial treatment overseas costs thousands of dollars


Read more: http://www.montrealgazette.com/health/patients+eagerly+pursue+their+liberation/3124221/story.html#ixzz0qLE3zsIC
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CCSVI總整理

雖然重點都是強調CCSVI 為MS(多發性硬化症)的只要原因,
但是我傾向於只端看靜脈窄化的問題所造成的影響-->
Venous stenosis-->Stroke--->Disable
我個人認為靜脈窄化的問題應該屬於一種"慢性中風"
不管我是不是MS病人,我希望能夠將窄化的靜脈予以擴張,就 能夠減少中風的可能性。

What is CCSVI?

Chronic Cerebrospinal Venous Insufficiency (CCSVI) is a condition discovered by Dr Paolo Zamboni from the University of Ferrera in Italy. It refers to a reduction of flow of blood from the brain to the heart due to the narrowing of various veins along the spinal chord from the head down to the upper chest.

It is believed that this condition is what causes build-ups of iron to form in the brain. Eventually, these would then cause the development of the lesions and MS symptoms.

How is it diagnosed?

Although perhaps not the only possible method for detecting the condition Dr Zamboni and his team used combined technique of high resolution echo-colour-Doppler (ECD) and transcranial colour coded Doppler sonography (TCCS). Combined they are referred to as an ECD-TCCS

Which according to his paper this test is non-invasive, repeatable and cost effective. Most importantly it is effective for investigating the outflow of blood from the brain.

Unfortunately, right now there isn’t a standard method of performing this test. Because of this information being highly specialized there are only a few locations that are capable of performing it.

An outline of what Dr Zamboni and his team performed is available in his research paper: Doppler haemodynamics of cerebral venous return. However, the full text off this paper is currently only viewable by the research and medical community.

How is it treated?

Precise details are not known (at least by the author), however currently the only treatment that has been developed for treating CCSVI is involves first identify the veins that are blocked using a procedure such as the ECD-TCCS stated previously.

After this an appropriately qualified surgeon would be required to operate on the affected veins. The technique employed by Dr Zamboni’s team was to insert what he called a balloon into the vein and expand it effectively stretching the vein. For most of his patients the expansion was permanent and once the blockage/restriction was removed their MS symptoms began to dissipate.

It is hoped by many in the MS community that this is the miracle they’ve been hoping for.

附上一些主要連結的網站,影片,以及相關的附件檔案供大家參考

Italian doctor may have found surprisingly simple cure for MS

重 大的醫學發現: MS的原因找到了?!

專 訪Dr.Zsmboni :靜脈窄化導致MS原因的發現者

靜脈狹窄以及擴張手術資訊
CCSVI - Multiple Sclerosis多發性硬化症手術
全 世界目前有CCSVI 靜脈擴張術的地點
feature on CCSVI BBC news
印 度也提供了CCSVI的手術
史 丹佛大學Dr. Michael Dake 對於CCSVI和MS的看法
波 蘭有關CCSVI手術的報導
英 國也加入了CCSVI的行列
又 一位MS病人重獲新生!!
重 生的MS患者再加1"Chris Alkenbrack"
靜 脈擴張手術改變了我的人生"Wendy Sturek神奇的旅程-
另 一位國外的MS病友在執行靜脈擴張手術後的經驗分享
提 供給病友國外醫師聯絡資訊
醫 生說: 病人沒有時間再等待了
更 多靜脈窄化和靜脈擴張術的新聞fromCBC news
美 國將開始計畫執行對靜脈血管窄化相關研究
更多有關靜脈血管窄化的資訊
To Poland with hope 懷著希望到波蘭
為 了爭取實驗性的手術,加拿大MS病患上街聲援遊行
多 發性硬化症新研究頸靜脈異常疑為元兇(來自水牛城500名MS病患

國 外手術中以及scan的影片,分享給大家

印 度也提供了CCSVI的手術

再 看一個國外手術後成功的例子

又 一位國外的MS病友手術後的經驗分享

另 一位國外病友Lucky Lady 手術過程分享

聽 聽更多MS人的手術經驗吧

波蘭有關CCSVI手術的報導

更多有關靜脈血管窄化的資訊

http://www.edmontonjournal.com/health/patients+eagerly+pursue+their+liberation/3120746/story.html

目前就國外已經做過此手術的病人(半年內)來看,至少有以下相當良好的反應,主要解決了:

1. 容易疲憊的問題,精神變更好
2, 平衡感的問題,走路不再跌跌撞撞
3. 感覺神經恢復,不再對冷熱敏感,
4. 排尿較為自主,不會有漏尿的問題
5. 體力變好,肌耐力變強,病人由拄兩枝拐杖變成一隻,原本foot drop,之後不會,之前蹲下後站不起來,之後可以自行蹲下站立
6. 行動變靈敏,敏捷,不再遲鈍,遲緩
7. 下肢皮膚呈紫色轉變為原來的紅潤顏色
8. 頭不會發脹了,也不會頭痛
9. 原本身體疼痛的部位也不再疼痛
10. 感覺全身變溫暖許多
11: 手和腳的行動更靈活
12. 行走的距離變長了
13. 甚至可以騎腳踏車

所以對於病患 本身而言是相當有幫助的,除非該病人並未檢查出靜脈窄化的情形。
另外大家可以上youtube網站查詢CCSVI就可以得到一堆MS病人做完手術後的影片!

很多病友都希望藉此回復到過去正常的生活,
這樣也不用再浪費社會的醫療資源了,我本身也曾經注射過干擾素,相信我,
沒 有人想要一輩子都注射它,我也服用類固醇長達兩年的時間,
I've been tired of taking medicine.
國外的病人即使年紀高達50 歲以上(患此病超過20年)都還願意做此手術,
可見他們已經被折磨的不成人形.....

熟習此技藝(動脈血管擴張手術)表示:這種手術在技術上沒有任何問題,是一種很成熟的技術。

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更多的病人手術後的結果分享

附上更多的病人手術 後的結果:
http://www.youtube.com/watch?v=6ObBpob2y9A&NR=1

Ruth Simonyi-Gindele and her MS story goes back over 20 years. By Dec. 09, she was in a desperate state. He husband took her to Europe at Christmas, and within 24 hours after being treated her MS symptoms had mostly gone. She was even taking 2 hour walks!
Ruth shares her experience.

http://www.youtube.com/watch?v=l9syfTlcTrs&feature=related

Matthew Nomm, a retired General Practitioner, was diagnosed with MS in 1985. On March 24, 2010 he flew to India for his CCSVI treatment that included a vein grafting to correct a blocked jugular vein. He has found significant relief from his MS symptoms and continues to improve.

http://www.youtube.com/watch?v=TtSzGQ_0l_4&feature=related

Hi everyone, here is my update on how I am feeling 20 days after having a venogram and ballooning of stenosed jugular veins.

http://www.youtube.com/watch?v=eNQnMsXxUg4&feature=related

I can jump after Liberation treatment

http://www.youtube.com/watch?v=j6LRZ0cavpw

This is the second of two videos done today,a little more than 24 hours after the blockage in my jugular veins were cleared.There was a 35% in the right jugular vein, as suspected. The left vein had a clot. It would not remain open ,so a stent was inserted.
Color me excited and slightly in shock and awe.

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