clotted off jugulars

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

Re: Ask Questions & Demand Clotting Screen

Postby soapdiva884 » Sat Mar 19, 2011 11:34 am

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Last edited by soapdiva884 on Sun Mar 20, 2011 4:11 pm, edited 1 time in total.
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
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Postby Cece » Sat Mar 19, 2011 12:54 pm

ozarkcanoer, I was sorry to read that it turned out this way for you.

We keep hearing about scarring lately, I wish it were better defined. Is it the end result of clotting? The end result of intimal hyperplasia? The end result of inflammation alone? The end result of injury to the vessel and thrombi coating the vessel as it heals?
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Postby ozarkcanoer » Sun Mar 20, 2011 7:45 am

Cece... Dr Haskal told me that scarring may occur due to any stent placed anywhere. It happens often at the ends of the stent. I asked this question in Dr Sclafani's thread and he has not replied yet. I know that the only way that the cause of stent occlusion is by an IR going in and looking. Carol Schumacher was treated by Dr Haskal and also has a stent completely occluded by scar tissue. Dr Haskal told me this can be treated but with a different and more complicated procedure than venoplasty. He said that a diamond tipped drill cannot penetrate these scars. Apparently there is at least 1 doctor on the west coast that uses lasers to open stents occluded with scar tissue. Frankly I do not know what else can cause these complete occlusions of stents. Maybe a good reason for avoiding stents for the time being.

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Postby Cece » Sun Mar 20, 2011 10:20 am

Intimal hyperplasia often happens at the end of the stent, where the stent irritates the vein. That might be what we're talking about...

Dr. McGuckin is using radio frequency ablation against blocked stents. Dr. Cumming did not however think this was a particularly viable option.

I think these blockages might end up being out of the hands of our IRs and into the hands of a vascular surgeon. If Dr. Zamboni's team has done 5 surgical jugular vein reconstructions, as hinted at in the ISNVD abstracts, I want to hear how those went! The one done in India did not go well and Dr. Mehta has talked about the possibility of these grafts (most recently in the CCSVI Alliance talk with Dr. Dake) but to my knowledge has not done any yet.

I agree about the avoiding of stents. Some people get lucky with them but too many don't.
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Postby Liberation » Sun Mar 20, 2011 12:42 pm

Cece wrote:Intimal hyperplasia often happens at the end of the stent, where the stent irritates the vein. That might be what we're talking about...

Dr. McGuckin is using radio frequency ablation against blocked stents. Dr. Cumming did not however think this was a particularly viable option.

I think these blockages might end up being out of the hands of our IRs and into the hands of a vascular surgeon. If Dr. Zamboni's team has done 5 surgical jugular vein reconstructions, as hinted at in the ISNVD abstracts, I want to hear how those went! The one done in India did not go well and Dr. Mehta has talked about the possibility of these grafts (most recently in the CCSVI Alliance talk with Dr. Dake) but to my knowledge has not done any yet.

I agree about the avoiding of stents. Some people get lucky with them but too many don't.


I agree with you about stents. I talked to a vascular surgeon who heads a department whicch carries out CCSVI procedures and he told me that stents should be comletely avoided for now.
I am just wondering what do you guys heard about scarring and intimal heperplasia in case of ballooning when no stent is inserted?
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Postby Liberation » Sun Mar 20, 2011 12:51 pm

Brainteaser wrote:Having had several treatments now, I don't think there is enough 'after sales service' in this procedure. People are regressing at an alarming rate. Someone needs to get completely across why this is happening. Whether it's thrombosis or intimal hyperplasia, we need to know - and quickly. Moreover, we need to do something about it. Already one person has died as a result of inadequate followup. Personally, I'd like to know how the early Italian patients are doing. Some of the early Polish patients are not travelling well and Kuwait has been quiet.

Hey Brainteaser, dr Sinan told me that they had 6 thrombosis out of 300 patients in Kuwait/Egypt. he said that all of them have been cleared of the thrombosis in the following days. He also said that all of the patients he treated had fewer MS leasios 3 months after the surgery.
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Postby pklittle » Sun Mar 20, 2011 1:22 pm

Liberation wrote:
Brainteaser wrote:Having had several treatments now, I don't think there is enough 'after sales service' in this procedure. People are regressing at an alarming rate. Someone needs to get completely across why this is happening. Whether it's thrombosis or intimal hyperplasia, we need to know - and quickly. Moreover, we need to do something about it. Already one person has died as a result of inadequate followup. Personally, I'd like to know how the early Italian patients are doing. Some of the early Polish patients are not travelling well and Kuwait has been quiet.

Hey Brainteaser, dr Sinan told me that they had 6 thrombosis out of 300 patients in Kuwait/Egypt. he said that all of them have been cleared of the thrombosis in the following days. He also said that all of the patients he treated had fewer MS leasios 3 months after the surgery.


I thouight I read that Dr. Sinan is not tracking those he treated, so these are extremely bold claims.
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Postby Liberation » Sun Mar 20, 2011 1:52 pm

pklittle wrote:
Liberation wrote:
Brainteaser wrote:Having had several treatments now, I don't think there is enough 'after sales service' in this procedure. People are regressing at an alarming rate. Someone needs to get completely across why this is happening. Whether it's thrombosis or intimal hyperplasia, we need to know - and quickly. Moreover, we need to do something about it. Already one person has died as a result of inadequate followup. Personally, I'd like to know how the early Italian patients are doing. Some of the early Polish patients are not travelling well and Kuwait has been quiet.

Hey Brainteaser, dr Sinan told me that they had 6 thrombosis out of 300 patients in Kuwait/Egypt. he said that all of them have been cleared of the thrombosis in the following days. He also said that all of the patients he treated had fewer MS leasios 3 months after the surgery.


I thouight I read that Dr. Sinan is not tracking those he treated, so these are extremely bold claims.


I talked to him several times. He encourages patients to have MRI before the operation and theree months after the operation. However, we have to be aware of the fact that marketing is always strong before getting our money. :)
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Postby WinnipegGirl_83 » Wed Mar 30, 2011 10:23 pm

I was treated by Dr. Sinan. He has not contacted me since my procedure in August 2010. He would have no way of knowing the number of lesions I have or if I have re-stenosed (which I have). Very bold statements on his part if this is accurate info.
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Postby Liberation » Wed Mar 30, 2011 11:10 pm

WinnipegGirl_83 wrote:I was treated by Dr. Sinan. He has not contacted me since my procedure in August 2010. He would have no way of knowing the number of lesions I have or if I have re-stenosed (which I have). Very bold statements on his part if this is accurate info.


Thanks, it is good to know. I think we can rely only on our own experience. Otherwise, did you experience any improvement? Did you get your vein checked for restenosis, thrombosis and scarring since the operation? It is too bad that marketing of certain doctors differ from our own experience. I heard from IRs doing follow-ups about problems also in Poland and Bulgaria.
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Postby WinnipegGirl_83 » Thu Mar 31, 2011 6:16 am

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?
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Postby 1eye » Thu Mar 31, 2011 8:39 am

Perhaps, if you are concerned about scientists having stats to work with, this is a good reason to follow Dr. Zamboni's advice and only get treated within a trial.

There are a large number of CCSVI/'MS' sufferers worldwide. While they may or may not be 'desperate', they are often in a hurry to avoid disability and pain. I would guess very few care whether scientists come to any consensus.

I think that people not being treated in a trial is one reason good stats are not being kept worldwide.

Another is the attempt to confer pariah status on doctors and patients alike, by some so-called scientists and neurologists (not to mention the media).

Another likely reason is that there is no business incentive or 'case' for spending the money required to do this. Dr. Simka can recommend, but he cannot make people get MRIs, or fly to Poland for follow-up treatment, or pay for MRIs in other countries himself (at least in Canada they are quite expensive). I would like to see *any* of these doctors write a peer-reviewable paper on reproduction of Dr. Zamboni's MRI results. That would assist the AFA lawsuit.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Liberation » Thu Mar 31, 2011 1:43 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?


Hi, I am really sorry to hear that. How did it get blocked? As I know dr Sinan uses a very a very agressive anticoagulant regimen. I was treated in Serbia, but they used a really small ballon, so my RIJV got restenosed. Now, I was planning to go to dr Sinan in April, but now I have some concerns about it. I am also in contact with dr Sclafani, but I do not know when I can get an appointment with him and I do not know how the long flight would work out for me. I do not know if dr Sclafani's hospital is part of a clinical trial or not.
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Postby Liberation » Thu Mar 31, 2011 1:48 pm

1eye wrote:Perhaps, if you are concerned about scientists having stats to work with, this is a good reason to follow Dr. Zamboni's advice and only get treated within a trial.
.

Hi 1eye, Where did you get treated? Can you recommend any places which are part of a trial? How much would they differ from other clinics if someone lives far from the country where he gets the treatment?
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Postby WinnipegGirl_83 » Thu Mar 31, 2011 2:03 pm

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)
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