clotted off jugulars

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Liberation
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Post by Liberation »

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WinnipegGirl_83
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Post by WinnipegGirl_83 »

I had my procedure in Aug 2010. I was on four anti-coag at the same time one of which was an injection. His regimen with me was very aggressive. I don't believe the cause of my re-stenosis was due to a lack of anti-coag. What do you think?

I e-mailed Dr. Sinan a few times with no response. I understand he is busy.
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Liberation
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Post by Liberation »

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WinnipegGirl_83
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Post by WinnipegGirl_83 »

At the time, I did not even know if I had CCSVI and so after researching and talking to other Canadians I felt he was my best shot. I was able to get in quickly, and with work I had the month of August off.

I am not sure why it is blocked. There could be a number of reasons...I think in due time we will understand this disease better.

How far are you willing to travel into the states?
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Post by Cece »

WinnipegGirl_83 wrote:I had my procedure in Aug 2010. I was on four anti-coag at the same time one of which was an injection. His regimen with me was very aggressive. I don't believe the cause of my re-stenosis was due to a lack of anti-coag. What do you think?
How long were you on the injectable? For some patients I think it was a month, but for some it was a week, which might not be long enough. There is also Dr. Sclafani's recent movement away from using the large balloons, due to him seeing a connection possibly between them and more cases of thrombosis:
www.thisisms.com/ftopicp-157988.html#157988
I don't like trying to analyze this afterwards, I'd rather it never happens, and then you are saying you are getting worse now than you were before the procedures? Is there any possibility that the vein will restore itself on its own? (What is the length of time in which recanalization can happen?)
It is really not good that doctors do not keep track of their patients, so they can not get any feedback to what they do. They might do something for a long time which is completely wromg. It is quite irresponsible of them.
It's among the drawbacks of medical tourism, imo. Dr. Sinan has to be getting feedback and follow-up with his Kuwaiti patients, though?
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WinnipegGirl_83
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Post by WinnipegGirl_83 »

The injectables I took for 10 days. If I had thrombosis or a clot would I still have felt better after the procedure? I'm just spinning here...not sure if it is in my favour to be picking apart the decision to go. I was and am desperate, not sure if I have my head on straight.
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Liberation
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Post by Liberation »

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Liberation
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Post by Liberation »

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Liberation
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Post by Liberation »

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Post by Cece »

Liberation wrote:Hi Cece,
I also asked Dr Sclafani about the size of balloons he uses now and I was told that he still uses large balloons but he scales it to the size of the vein via ivus, so he can avoid using extra large ones. I am just wondering whose risk is greater, when there is a very big (lets say 80-90%) stenoses that is stretched by a balloon whose size is scaled to the stenoses or when there is a small stenoses (lets say 30-40%) and it is stretched by an extra large balloon? Of course, supposing that the veins have the same size in both cases. Wouldn't the damage to the vein walls would be greater in the first case as I am stretching more here? If that is the case, then risk of thrombosis pretty much depends on the patients population someone is treating. It is just a question.
My own case is the first scenario, for my left jugular, where I had a 99% stenosis. He measured the vein above it using ivus, which is more precise than the venogram external measurement. The 14 mm balloon chosen should have stretched the valve but done less damage to the vein. The balloons are longer than just the area of stenosis, because small balloons can be like watermelon seeds that slip out of place. So the balloon will be ballooning some healthy area of vein, not just the stenosis, and that is the area that may be most affected by the choice to oversize or to precisely size.
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WinnipegGirl_83
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Post by WinnipegGirl_83 »

I have no idea. I did not receive any written documentation about my procedure from Egypt. I requested it a few times but never got it. There is a big difference between our medical system and the Egyptian one. The written documentation and follow through is not there. I would really like to know if his 1-2% is from his Kuwaiti patients. Regardless, is he not doing the same procedure in Alexandria that he is in Kuwait. The numbers should be the same.

Out of the the 5 people I keep in contact with from Egypt, 4 out of the 5 have had to have the procedure again. And that's not even including me. Dr. Sinan is a great doctor and person nothing against him but I am seriously questioning the numbers that are floating around here.

I also read on this forum that Dr. Sinan uses a "poor man's cutting technique." I would look into that as well if you plan to see him.
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pklittle
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Post by pklittle »

I think is is pretty clear that the 1-2% rate with Dr. Sinan is a myth.
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Liberation
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Post by Liberation »

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Cece
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Post by Cece »

Liberation wrote:Mine was treated by a really small (6mm) but dr Sclafani told me it was too long and unnecessary damages the healthy parts. Did he use longer balloons in your case bacause of the small size of the balloon? Otherwise would he use longer ones? :)
Actually length of balloon is fairly standard as far as I know. I may have miscommunicated that; someone once asked about using short balloons but they are not practical. Placement of balloon and balloon's shoulder matters too. Let's see...
How many patients has he treated since he uses ivus?
He has treated over 100 patients.
How are his results fair with his older results with giant balloons?
too soon to tell as far as I know (drsclafani, if you find this, these are yours to answer.... :)
I would like to get an appointment from him; however, I am still afraid of getting thrombosis on the plane.
Does your regular doctor have any ideas? Could you take something preventatively? At least on the way back, you'd be on Arixtra, an anticoagulant which prevents thrombosis.
My IR told me that he does not understand why others do not use ivus.
Without IVUS, imo, there is not the same certainty that everything has been found and treated appropriately. I was really glad to have it used.

Does anyone know, has Dr. Sinan been in communication with the other doctors about the concern over large balloons?
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