This Is MS Multiple Sclerosis Community: Knowledge & Support

So has anyone heard what has happened in Kuwait

It has been said (but nothing published) that Dr. Sinan of Kuwait has done over 200 procedures. He uses aggressive ballooning since he is not allowed to use stents. He is said to be finding restenosis rates of 2% (meaning that 98% of his patients did not restenose) at three months post-procedure. If accurate, those are unprecedented results for CCSVI. He also has an innovative technique where he balloons the azygous lightly as a diagnostic tool and then balloons big if he finds anything. He spoke at the Brooklyn CCSVI symposium hosted by Dr. Sclafani in July, these vids can be watched on youtube.

Does anyone have a link to the Dr. Sinan youtube video? I am very curious about his techniques.

Donnchadh

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!

The link
http://www.youtube.com/watch?v=cChReoCFEN0

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info

Here it is, Enjoy!!!!!

http://www.youtube.com/watch?v=cChReoCFEN0

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We must learn our limits. We are all something, but none of us are everything.
GuRu
RRMS Dx 07/09

Thanks for the heads-up on Dr. Sinan's presentation. That was outstanding, one of the best I've seen. He answered several questions I've had about the angioplasty process. And his treatment of the azygous vein is unique, I think. He reports finding webs or abnormal valves in the azygous of 95% of his patients, by using his technique. That is much higher than what is reported by patients who post on Thisisms. Add that to the very low restenosis rate he reports and it seems his work is deserving of study by others. I'm anxious to see the results of the trials they are currently doing.

Several people have reported that they thought the azygous was their problem. But during venograprhy their jugulars were stenosed but their azygous was clear. I wonder how many of those people in fact have the problems Dr. Sinan is finding in the azygous.

David, I'm with you, I think what Dr. Sinan is finding is real, so the difference between his 95% azygous stenosis findings and the percentage of what the other docs are finding there (Simka's results were recently posted, it was a really low figure) would be the missed azygous stenosis group, IMO.

David and Cece,I am with you both too. Just wish all doctors could be on the same page.

There was a case I saw a month or so ago on this site of another person being treated by Dr. Sinan in Egypt rather than Kuwait, who did not have good results. I cannot find it (sorry I'm useless with computers) but think they were quite a bit worse off than before they went.

Drury

Data from medical tourism is going to compromised by difficulty in obtaining accurate followup.

I need to see a publication

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

What makes you believe his findings are real? I am just curious.

I don't call it medical tourism for Liberation treatments not available locally. I got no tours as freebies with my trip to Albany. Those physicians who choose to run a clinical trial, and do arrange local follow-up for and with their patients, are not compromised in any way. They have just enlisted local physicians to take part in their trial.

Chris Sullivan

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Scorpion, it's because what I understand of his diagnostic technique in the azygous (partially inflating a balloon throughout the entire azygous and looking for where a web or something is providing resistance), it's really smart.

IVUS and properly imaging the azygous were among the solutions, then Dr. Sinan added his solution, all addressing an already identified problem.
(edited: apparently these are a different sort of azygous web, not the garbage pail lid kind.)

But I agree that we need published research to know for sure.

Daniel, it's never been possible to be treated in Kuwait unless you are Kuwaiti, but Dr. Sinan has been bookable for treatments in Egypt. There was a blog of a patient's experience there, where Dr. Sinan kept trying to get a resistant stenosis to open and was considering giving up but he went to the highest balloon diameter he uses and swooosh it opened. Not sure of the ultimate outcome.

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. The problem is that there are three parts to the venoplasty treatment and each part is as important as the next: first finding all the CCSVI issues through imaging and during the procedure; then successfully opening them all; then keeping them open through anticoagulants and post-procedure doppler scans at 1 month, 3 months, etc, to catch any problems. Dr. Sinan has done a great job with some innovative techniques at first finding, then opening, the ccsvi malformations, but then the patients go home and that third part of the follow-up care is done differently by everyone and poorly by some.

I agree with Cece. The methods, both of Dr. Sinan and with IVUS, are likely to find stenoses and CVMs, where a fluoroscope would miss them. As the paper I quoted yesterday said, IVUS is also likely to be very helpful in preventing damage to real valves.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience