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.

Ottawa和Ducan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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