This Is MS Multiple Sclerosis Knowledge & Support Community

There is an abstract out from Dr. Sinan's team in Kuwait, and the results are not good.

[S10.007] Endovascular Treatment of Chronic Cerebro-Spinal Venous Insufficiency in Multiple Sclerosis: Preliminary Data from a Prospective Open-Label Study

Raed Alroughani, Sulaiman Al-Khashan, Shekhar Lamdhade, Kuwait

OBJECTIVE: [...]

But notice something? Dr. Sinan is not listed as one of the investigators. Only the two neurologists are listed. Joan took the initiative to conact Dr. Sinan, and here is what he responded:

"Thank you for bringing this to my attention.
I want to reassure you that this was not approved or discussed or reviewed by my self as the principal investigator nor the other members of the team, Dr. Hussain Safar, Dr. Muzaini and Dr. Sluiman alkhashan,
It will be immoral and ethical to publish this as the rest of the team have a different conclusion and result than Dr. Alroughani who has only seen the patients and followed them up for the first 6 months.
Our study is still on going and we are waiting for final result of 2 years follow up.
Best regards,
Dr. Tariq Sinan"

Wow.
Two members of the team are presenting results without the cooperation of the whole team or all the data? The results are not great, and I want to see research such as this if it exists, because we need to know the good and the bad, and this is not definitive, just as any one positive study is not definitive. But I do not like to see Dr. Sinan abused by members of his own team in this way.
We heard from Dr. Burks at ISNVD about the importance of multidisciplinary collaboration. But then we hear of Dr. Sinan being treated in this way. I am reminded of the story of the fox and the scorpion, when the fox agrees to carry the scorpion across the river, and halfway across the scorpion stings, and just before they both drown the fox asks why and the scorpion responds, "Because it is my nature." Is it in the neurologists' nature to sting? Maybe multidisciplinary collaboration is not what we need.

The abstract has now been removed from the AAN site, after the other doctors notified the AAN and told them that this was not authorized and was fallacious. Dr. Alroughani did this by himself, without notifying the other doctors, or receiving their OK. The other doctors claim this information is not correct. I hope there might be some sort of disciplinary action for Dr. Alroughani--
Here is the open letter from the other Kuwaiti researchers to the AAN:

Apparently Dr. Raed Alroughani was working in Canada up until a short time ago. Some of the patient reviews of him are less than stellar. This whole thing is very odd.

I'll remove the abstract from here too.

On a lighter note, Cece - when you talk about 'scorpion', that's not someone we know here at TIMS perhaps?

lol brainteaser...
It was stressed at ISNVD that it's important for the different disciplines, including neurology, to come together and discuss and collaborate and, I don't know, treat each other professionally? And I am not sure how that can be achieved. There is hostility.

Here's something Arlene Hubbard said on Facebook today, I'm copying rather than summarizing:

I just saw David's scientific abstract listing for the AAN meeting. They are having a session on CCSVI and MS. Two of the abstracts are by Dr Jerry Wolinsky from Texas who is against CCSVI. One is by Raed Alroughani. David spoke with Tariq Sinan who said he has tried to get the AAN to pull the abstract from this meeting. BUMMER

The abstract wasn't pulled after all?

I can't find it on the AAN site anymore, the previous link I had is gone, and have asked Arlene for clarification...there's no sign of Alroughani's name on the abstract site, as well. Not sure she got the recent news...have posted on her FB page.
cheer

I just came across this thread. I had CCSVI treatment by Dr Sinan about 4 years ago, in egypt. I liked him, but there was no follow up. They said I should get a scan done somewhere after 6 months but that was all. If proper research was being done I would've been included.
I had no benefit at all from the treatment and continued to deteriorate.

he1en wrote:I just came across this thread. I had CCSVI treatment by Dr Sinan about 4 years ago, in egypt. I liked him, but there was no follow up. They said I should get a scan done somewhere after 6 months but that was all. If proper research was being done I would've been included.
I had no benefit at all from the treatment and continued to deteriorate.

I think the procedures done in Kuwait were the research, and procedures done in Egypt were out-of-pocket procedures not included in the research data.

Dr. Sinan was an early proponent of the oversized very large balloons done in with the expectation that this would lead to more durable results. Unfortunately this may have led to a greater percentage of clotting and vein damage in his patients.

Is there anywhere local to get a follow-up exam? I had mine done in December, which showed open veins three years after my procedure in NY.