clotted off jugulars

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

Postby Liberation » Thu Mar 31, 2011 3:08 pm

WinnipegGirl_83 wrote:Hi Liberation,

Yes, I was feeling great after the procedure in Egypt for a number of months. My symptoms started to come back about 5 months later and so I began to search for another doc as I was not wanting to travel all that way again. I was re-treated at the beginning of March. All 3 veins re-narrowed but the RIJV was completely blocked. My symptoms have been ridiculous to say the least. I am not sure how much longer I can do this day in and day out.

How are you? Where were you treated?


It just came to my mind that dr Sinan said that they had 4 thormbosis only in the first hundred patients because he used a different anticoagulant regimen that time. I am just wondering how the numbers add up. When did you have your first treatment? Did you get back to him? 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.
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Postby WinnipegGirl_83 » Thu Mar 31, 2011 3:16 pm

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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Postby Liberation » Thu Mar 31, 2011 3:17 pm

WinnipegGirl_83 wrote:I am not certain why it ended up blocked. I know the first time Dr. Sinan had a heck of a time getting in there. Where are you from? There are some great docs in the U.S (in addition to Dr. Sclafini)

I am from Europe. Serbia was very close to me, but they are fully booked and they use a very small ballons so I should find some other place. It was a sate run hospital. What do you mean by your RIJV got blocked? Was it very narrow before the operation and now a thrombosis just blogged it completely? Do you know why did it get blocked? Could it be due to Sinan's agressiv technique? Who are good in the US? How come did you end up in Egypt and not in the US?
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Postby WinnipegGirl_83 » Thu Mar 31, 2011 4:00 pm

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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Postby Cece » Thu Mar 31, 2011 4:43 pm

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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Postby WinnipegGirl_83 » Thu Mar 31, 2011 6:54 pm

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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Postby Liberation » Thu Mar 31, 2011 11:53 pm

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?

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

Hi,
I sent you Dr Sinan's cell phone number pm, you can reach him there. He usually does not replies to emails as he is busy. I hope it will help you.
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Postby Liberation » Fri Apr 01, 2011 4:57 am

Cece wrote:
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

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.
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Postby Liberation » Fri Apr 01, 2011 5:10 am

WinnipegGirl_83 wrote: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?

When you say it is blocked, do you mean blocked by a clot or it is just an elastic recoil? How big was your stenoses before the operation? DId it just get back to that size now? As far as I know 1-2% of dr Sinan's patients got restenoses. I would assume that he only counts his kuwaiti patients. They used a small balloon in my case in Serbia and I got rstenoses in 2-3 weeks. My doctor expected this as they do it very conservatively. a week ago I got my RIJV checked and it was fully rstenosed, just like it was before the operation.
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Postby Cece » Fri Apr 01, 2011 8:46 am

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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Postby WinnipegGirl_83 » Fri Apr 01, 2011 9:01 am

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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Postby pklittle » Fri Apr 01, 2011 10:53 am

I think is is pretty clear that the 1-2% rate with Dr. Sinan is a myth.
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Postby Liberation » Fri Apr 01, 2011 3:12 pm

[quote="CeceMy 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.[/quote]
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? How many patients has he treated since he uses ivus? How are his results fair with his older results with giant balloons? I would like to get an appointment from him; however, I am still afraid of getting thrombosis on the plane. Since I have MS, I flw overseas twice and both times I had uncomfortable pain in my legs and once my calf got even swollen. I got an appointment with dr Sinan, but now I am pretty scared going to there. My IR told me that he does not understand why others do not use ivus. The best thing would be of course, if ther would be a "Europen dr Sclafani" as well so I could avoid overseas flights. :)
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Postby Cece » Fri Apr 01, 2011 3:28 pm

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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Postby Lyon » Fri Apr 01, 2011 3:44 pm

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Last edited by Lyon on Fri Jun 24, 2011 6:22 pm, edited 1 time in total.
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