KUWAIT - Has anyone heard

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby 1eye » Thu Oct 21, 2010 12:32 pm

Cece wrote:
1eye wrote:I don't call it medical tourism for Liberation treatments not available locally.

Hi, 1eye!

I think that is the very definition of medical tourism: traveling for a procedure either not available locally or not available at the price you want! :)


Well I guess we've got different definitions. See I think some people add on a trip up the Venice canals, or whatever, and partly the reason for travel is tourism. I might hear that the doctors in Venice do a nice laser eye treatment, and since I'm in the area... That is where tourism comes in. I agree, if a local doctor is not enlisted or the person is unwilling to come back, they are on their own, and any data not collected at the time is suspect. However many clinical trials have work done by people other than the lead physician; that's part of the cost sometimes borne by people like the 'MS' Society, and why trials can get ridiculously expensive.

This is not medical tourism. Look up tourism in wikipedia. It might better be called medical facilitation, which is what it is.

What do you call it when there are arguments in forums like this that are partly due to misconstrued or misunderstood messages, and partly due to the delays in typing and sending causing us to miss a later message than the one being responded to?

I call it a forum fuddle-duddle-muddle.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby L » Thu Oct 21, 2010 1:09 pm

daniel wrote:Is it still possible to get an appointment in kuwait? Anyone know where to go about doing that...?


It's not possible to be treated in Kuwait, but the team are carrying out procedures for non-Kuwaiti nationals. They fly fly to Alexandria, Egypt (for legal reasons) and you can be seen there.

Email Hatem at hatem.abouzeid@cb-betna.com or fill in a form on Dr Sinan's site.

http://www.drsinan.com/en/Default.aspx

I shall be there in December (precisely for the reasons given above regarding treatment of the Azygous vein.) I think there are still places free for December. If not then treatments go forward once a month.

Dr Sinan can be seen here discussing technique. This is on Kathleen's youtube channel - she was treated in Egypt - and you can find videos which discuss treatment in Alexandria there.
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Postby vivavie » Thu Oct 21, 2010 1:19 pm

Hello L, Do you have some informations about pricing?

Thank you
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Postby L » Thu Oct 21, 2010 1:23 pm

vivavie wrote:Hello L, Do you have some informations about pricing?

Thank you


7000 USD See you all in December!
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Postby Cece » Thu Oct 21, 2010 2:05 pm

1eye wrote:I call it a forum fuddle-duddle-muddle.

I call it water under the bridge. (The Brooklyn Bridge, perhaps, touristically speaking?)
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Postby vivavie » Thu Oct 21, 2010 2:54 pm

Since I saw his presentation in NY I have been trying to get my Dr to watch the video but no luck yet!

The HEAT in Egypte scares me more than the distance!

Please keep us inform after you are liberated.

I envy you!!! I wish you all the best!

:D
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Postby L » Fri Oct 22, 2010 2:39 am

vivavie wrote:Since I saw his presentation in NY I have been trying to get my Dr to watch the video but no luck yet!

The HEAT in Egypte scares me more than the distance!

Please keep us inform after you are liberated.

I envy you!!! I wish you all the best!

:D


Between December and March the temperature isn't a problem, an average between 18° and 21° C, 60° and 70° in Fahrenheit..

Thanks for your good wishes vivavie!
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Postby Brainteaser » Fri Oct 29, 2010 9:01 pm

The video of Dr Sinan's technique and results was from his talk in July, but posted in September. I have only seen limited reports from individuals treated by Dr Sinan.

So do we have an accurate understanding of what's happened between July and almost November?

Have the reported successes been maitained?
Any of the trial subjects gone backwards?
Any private patient successes?

4 months seems a long time for no news.

Phil
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Postby Cece » Fri Oct 29, 2010 9:22 pm

Here's the only blog that turned up in a quick search:
http://hopeforlee.blogspot.com/2010_07_01_archive.html

That's the account of his procedure with Dr. Sinan. He had a 20 mm balloon used on a particularly troublesome valve.

http://hopeforlee.blogspot.com/2010/08/ ... -good.html

That's the update 2 months later.

http://hopeforlee.blogspot.com/2010_10_01_archive.html

And the 3 month update.
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Postby Brainteaser » Fri Oct 29, 2010 9:59 pm

Thanks Cece,

But hardly a ringing endorsement for big balloons etc.

I note that Dr Sclafani says he'll adopt Dr Sinan's techniques when he comes off the bench - maybe there's a specialist underworld of info circulating which we mere mortals are not privy to.

But you'd expect good news to travel fast........

Phil
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Postby Cece » Fri Oct 29, 2010 10:27 pm

Brainteaser wrote:I note that Dr Sclafani says he'll adopt Dr Sinan's techniques when he comes off the bench - maybe there's a specialist underworld of info circulating which we mere mortals are not privy to.

Dr. Sclafani said that a doctor, whom we inferred was Dr. Sinan, has been seeing restenosis rates of 2%. Meaning that 98% are not restenosing. That might be specialist info?

Cheerleader said that this was data from 2 months, or maybe 3 months (can't recall) and that Zamboni found restenosis averaged at 8 months out. So too early to tell.
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Postby Brainteaser » Sat Oct 30, 2010 12:39 am

Cece,

I think the 98%/2% split came from Dr Sinan himself in July.

Regarding too soon to say - that doesn't seem right. Dr Sinan said in July that of the original 15 trial participants from April, 8 had restenosed one month later, but the big balloons had fixed all that, as reported in July. It was being put by him that IRs shouldn't be afraid to use big balloons and there was no downside. Note that he nor others didn't say, people should wait until the 8 month to be certain - as per Zamboni. He was advocating the technique and others have endorsed it. So if there was an 8 month threshold, you'd expect more conservatism and qualification in the way the technique was presented.

Hence my queries regarding any update.

Phil
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Postby concerned » Sat Oct 30, 2010 11:41 am

1eye wrote:
Cece wrote:
1eye wrote:I don't call it medical tourism for Liberation treatments not available locally.

Hi, 1eye!

I think that is the very definition of medical tourism: traveling for a procedure either not available locally or not available at the price you want! :)


Well I guess we've got different definitions. See I think some people add on a trip up the Venice canals, or whatever, and partly the reason for travel is tourism. I might hear that the doctors in Venice do a nice laser eye treatment, and since I'm in the area... That is where tourism comes in. I agree, if a local doctor is not enlisted or the person is unwilling to come back, they are on their own, and any data not collected at the time is suspect. However many clinical trials have work done by people other than the lead physician; that's part of the cost sometimes borne by people like the 'MS' Society, and why trials can get ridiculously expensive.

This is not medical tourism. Look up tourism in wikipedia. It might better be called medical facilitation, which is what it is.

What do you call it when there are arguments in forums like this that are partly due to misconstrued or misunderstood messages, and partly due to the delays in typing and sending causing us to miss a later message than the one being responded to?

I call it a forum fuddle-duddle-muddle.


http://en.wikipedia.org/wiki/Medical_tourism

It doesn't say anything about visiting canals. It's nice to have your own idiosyncratic definitions, but using the commonly accepted one really aids in discussion.
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Postby Cece » Sat Oct 30, 2010 2:07 pm

concerned wrote:It doesn't say anything about visiting canals. It's nice to have your own idiosyncratic definitions, but using the commonly accepted one really aids in discussion.

Don't rise to the bait, 1eye, don't rise to the....

Too late?

BRAINTEASER, I am interested in your question too, and hoping someone else chimes in. I've offered all I had, it was not so much. :)

Here is where I heard the 2% figure:
http://www.thisisms.com/ftopicp-136511.html#136511
drsclafani wrote:I have said this from the beginning. There is no evidence that stents are ncecessary. Dr Zamboni, who has so far written the only study on this subject, recommended against stents

Four groups come to mind that have treated more than 200 patients each. Three use stents, one of them treats about half the patients with stents

one of these groups does not use stents routinely and has never placed a stent. Yet their restenosis rate at three months is2%. TWO PERCENT.

they are doing something right and i look forward to their publications

I will not stent
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Postby Cece » Mon Nov 01, 2010 7:57 pm

another blog of someone who had the procedure done by Dr. Sinan:
http://tinyurl.com/36y54f3
No updates byeond a month but a great description of everything surrounding the procedure itself.
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