MS醫生說 : 病人沒有時間再等待了
April 16, 2010 Joanna Frketich The Hamilton Spectator
(Apr 16, 2010)
The Italian doctor behind the theory that multiple sclerosis is a vascular disease says patients with no other option should get the treatment now instead of waiting for proof it works.
"They do not have time," said vascular surgeon Dr. Paolo Zamboni in an interview yesterday with The Spectator.
"I can totally understand the desperation of people without treatment that day by day are worsening."
He's urging governments to provide and fund, on compassionate grounds, the treatment called the liberation procedure. It involves inserting stents or balloons to open up malformed or blocked veins in the neck, which Zamboni believes plays a significant role in MS.
He says too many patients -- particularly from Canada -- are travelling abroad to get the procedure. He's had 56,000 MS patients worldwide, including thousands from Canada, contact him about getting tested or treated.
"I recommend to treat these patients in their home country," he said.
"Canada... is in the perfect position to offer to their patients this treatment."
Zamboni says it's "safe and cheaper" for patients who are rapidly declining, have tried all drugs treatments available and have no other options.
In contrast, he recommends MS patients who are not getting worse and have other treatments available should wait for more evidence before getting the procedure.
But the Ontario government considers the treatment to be "experimental" and won't fund it for anyone without more evidence that it works, says Ministry of Health spokesperson Andrew Morrison.
There are also no doctors in Canada providing the liberation procedure to MS patients.
Doctors and researchers overwhelmingly recommend patients wait for more evidence that malformed veins play a role in MS and that the treatment works.
Hamilton researchers are embarking on a study to test Zamboni's theory called chronic cerebrospinal venous insufficiency (CCSVI) that so far has been primarily funded by MS patients themselves.
The study, which will use MRI scans and ultrasound to compare the veins in the head of 100 MS patients with varying degrees of illness to 100 similar healthy people, needs at least $400,000 to get off the ground.
Zamboni says patients and their families shouldn't have to pay for the research themselves considering the promise his theory holds to revolutionize the treatment of MS, which until now was thought to be an autoimmune condition.
He believes research dollars should be freed up to test his theory.
So far only the Multiple Sclerosis Society of Canada -- after being pressured by patients -- has offered funding in Ontario and it's limited to $200,000 over two years.
"We need really to investigate CCSVI," Zamboni said. "It is irresponsible to not fund completely this kind of research."
讓更多的MS er 做檢驗才能夠更快得得到正確的結果!! 不是嗎?算我一份吧!
醫生說 : 病人沒有時間再等待了
count me in, too
回覆刪除蔡清標醫師說我的血管沒問題
回覆刪除這是表示這個對我無效嗎?
唉~~
dada
关键看你做过什么检查,一些MS病人最初认为正常(尤其在缺乏经验的医院),后来进一步检查又发现异常。不要轻易放弃。
回覆刪除DADA 建議你拷貝真正的檢查報告, 先確認報告的內容
回覆刪除Jimmy
看看这个例子,病人在德国做了超声与核磁共振,没有发现静脉有太大的异常,最后重新做静脉造影,才发现了静脉异常,做了手术。“静脉造影”被认为是最权威的检查,称为“gold standard”。下面是英文报告:I've blindly tried every new therapy that’s come along, and I've had my fingers burnt every time by scams like “Esperanza”. I've been following CCSVI and this time I thought that I could understand some of the theory behind it, so I sent emails to a few clinics around Europe.
回覆刪除I got a reply from a clinic in Germany almost immediately, offering to see me in two weeks! I can still walk a little around the house, but not much more than that, so my wife took me to Germany. I had a scan on 1st March, an MRI, MRV or CT scan, I don’t know what it was, but the result was not what I wanted. Neither of the veins in my neck was blocked. They were both narrowed, but not enough to need treatment. I went home feeling pretty sick about it, but at least all I’d paid was £800 for the scan. I think that was reasonable.
Then on the Sunday night after I got back, I got an email from the doctor, asking if I'd like to return for an “invasive pressure measurement, and if there is a pressure gradient one can try a dilatation”. I’d no idea what that meant, and I’d thought that I was finished in Germany. But maybe I’d misunderstood something, so I returned on Sunday 14th. I went into an operating theatre on Monday 15th, still with no idea of what was going to happen. I’d had to pay in advance for a dilatation, whether or not one was needed, but after I saw the “state of the art” equipment, and the number of staff involved, I’d no complaint.
I had a catheter fitted to my arm so that I could be given pain relief if I needed it.
I couldn't see any of what happened next, but a long tube was inserted into a vein in my groin. I could feel everything that was happening, but it wasn't painful, more uncomfortable. As the tube passed through the veins I had "electric shock" sensations through my head, ears and throat.
After about 20/30 minutes the doctor stopped and told me that he'd found a "stenosis" in a vein behind my ear, and asked if I’d give him permission to perform a "dilatation". I'd already paid for it, so of course I agreed. I could feel something happening inside my head. I know now that it was a balloon being inflated, to widen the vein. It didn't last long, and another 10 minutes or so and I was being taken to a recovery room. No anesthetic, and no pain relief, so it couldn't have been all that bad!
Read more about CCSVI Treatment - My Experience at www.multiplesclerosissurgery.com
Dear pengxc & Jimmy,
回覆刪除我是在榮總做都普勒超音波檢查
隔了兩個禮拜,蔡清標醫生說沒有異狀,沒有任何需要注意的
讓我很是沮喪,唯一的希望說
所以我應該去調病歷,在把病歷上的內容與大家討論嗎?
之前沒有調,是因為調出來也不知道跟哪各醫生討論了
或許可以找胡漢華醫師討論,可以掛他的號喔~
回覆刪除在所有的检查中,都普勒超音波檢查是最初步的检查,敏感性也比较差,即使完全正常,你也应该进一步做其他检查。应该说,静脉狭窄检查是一个新东西,目前真正有经验的医生很少,你更有权力怀疑这种结果。
回覆刪除去調病歷当然有帮助,至少知道检查的具体情况,也有助于下一步检查。
Dear pengxc & Jimmy,
回覆刪除非常感謝你們
我會找時間去找胡漢華醫生聽取他的意見.
DADA
这里也是一个例子,超声检查完全正常,然后病人做核磁共振发现严重的静脉狭窄。原因是一些部位,超声无法触及探测到。下面是英文报告:
回覆刪除my hubby had normal results from his doppler, too. They didn't do the transcranial doppler at Stanford. He had an MRV that same day, and that was what showed serious stenosis, high above where the wand could reach. Testing is still not there yet, without TCD technology- J
你做的是经颅超声(transcranial doppler)吗?如果不是,结果就更不可靠。
回覆刪除值得注意的是,静脉狭窄还与体位有关,这位病人的右颈静脉在卧位正常,但是在立位异常。而病人的左颈静脉在卧位与立位均异常。
回覆刪除my right internal jugular was fine laying down but showed stenosis while upright. my left was an issue both sitting and laying down. My Dr ballooned both veins.
另外一位病人的颈静脉也是在卧位正常,但是在立位异常。tested for CCSVI today. Doppler ultrasound showed vein stenosis while in sitting position. MRV showed normal vascular system while laying down.
感謝曉昌的資訊,讓我們獲益良多,沒有想到只是簡單的檢驗,竟然有如此大的不同,人體的奧妙果真不是我們輕易了解的。
回覆刪除所以作更精確的檢驗更有助於我們釐清靜脈是否窄化。
這讓我想到,在國外的影片中,Zamboni的檢驗病患多為坐姿,而台灣這兒的檢驗多為臥姿!
我的結果是左側臥位異常,右側臥位正常。
看來下次需要再請醫師針對坐姿部份再做一次!
通常MRV多為臥姿檢測..... 這樣就有點棘手了~
但要作靜脈造影可是侵入性的,要好好討論,
也許同時就直接作氣球擴張數......
Jimmy
Dear pengxc & Jimmy,
回覆刪除你們真的很了不起,可以蒐集到這麼多資訊
我5/3要住院去做高壓氧,這次也是做20次吧
加上之前做的就40,到時再來分享
至於靜脈,到國外做手術的費用真的令人吒舌
我跟青雲一樣,如果台灣也有檢查跟手術機會的話
我一定加入,有任何需要的我一定參與
dada