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**deleted by me**

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?

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.

ozarkcanoer

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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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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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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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?

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.

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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)