This Is MS Multiple Sclerosis Community: Knowledge & Support

[1eye]

I think I would add to the stent discussion: I might be wrong, but I think Dr. Zamboni said not to use stents before any negative events had happened. He did all his studies to show the procedure is safe without stents. He did warn about restenosis, and I'm sure vein doctors are aware of thrombosis. Certainly my cardiac doctor was, for arteries. Note that in my opinion, though it is a negative proof, worsening of "MS" symptoms as a result of either restenosis or thrombosis proves the efficacy of the procedure. As more and more people worsen (I am one of them) statistical significance would be achieved, if such patients, as well as those who did not worsen, had been followed with appropriate tests from the beginning. A lot of money is being wasted because CCSVI was called a hoax.

[Lyon]

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[Jugular]

Now that's the second time right recently that it's sounded that you've the impression that scorpion and/or I are against the theory of ccsvi and I know that both scorpion and I multiple times have separately made it clear that we are not against the theory of ccsvi.

It's the theory of CCSVI that's tripping up the research. Treatment trials are where the rubber is going to meet the pavement.

Without a doubt I've shown my frustration multiple times at people who are convinced without proof and try to convince others

The most convincing proof one can have is seeing one's own stenosed veins, undergoing treatment and experiencing the results. Having that experience makes it easier to find comfort in convincing others. Without that experience, it's only a matter of opinion - much like recommending a car based on its theoretical design, without ever having driven it.

I'd LOVE reason to think that ccsvi is capable of keeping me from ever having to be a caregiver but so far I don't see any clear signs that ccsvi is going to prove to be what it's reputed to be.

Don't despair. I expect that the various treatment trials now underway will produce the proof/validation we've been seeking. Also, even without any treatment options, MS charts its own course. 'Caregiver' status is hardly inevitable.

[Lyon]

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[scorpion]

Wow Jug your coment about being ant-CCSVI sure gave me a case of dejavu! For the sake of avoiding an argument let us assume CCSVI is actually a medical condition. You are saying I am anti a medical condition? I wonder if there are any people who are anti-atherosclerosis? Or maybe anti-hypertension? Maybe anti- genital warts??? If you are saying CCSVI is some kind of movement(political, patient) I guess you could say someone was either pro or anti but I loook at CCSVI as an unproven medical hypothesis put forth by Dr. Zamboni . Maybe sometimes some of us are talking about two different things?

CindyB this is a bit of a philosophical question but wouldn't the blood going to the brain be flowing at the same rate as the blood coming from the brain? Hmmm I need to think about that one.....

[1eye]

@skeptics: I am going to try a walk-aide. Big contrast from my wheelchair, if it works.

[Jugular]

Also, even without any treatment options, MS charts its own course. 'Caregiver' status is hardly inevitable.

Agreed but I'm probably preaching to the choir when I point out that she was diagnosed in 2006 and has experienced no progression but for some reason when it concerns MS it feels like time passing is getting you closer to the other shoe dropping rather than giving the feeling that you might come out of it unscathed.

That's the worse part of MS, Lyon, the toll that fear takes on the person suffering from it and their loved ones. I grew up with it in that my father had MS but he ended up scarcely having a problem. Though I wasn't so lucky, it made it easier for me not to give any ground to fear in my life and career.

It sounds to me that your wife's condition is stable and that you can afford to see how these developments pan out. Let's hope she stays so! In the meantime keep in mind that the people who post on this site generally are the worser cases since those who aren't experiencing any problems are less likely to visit sites like these.

Also, the fear doesn't get any better after treatment. Instead, fear of getting worse is replaced by the more nagging fear of re-stenosis and having it wipe out any improvements that you've experienced. So fear not, I guess?

Wow Jug your coment about being ant-CCSVI sure gave me a case of dejavu! For the sake of avoiding an argument let us assume CCSVI is actually a medical condition. You are saying I am anti a medical condition? I wonder if there are any people who are anti-atherosclerosis? Or maybe anti-hypertension? Maybe anti- genital warts??? If you are saying CCSVI is some kind of movement(political, patient) I guess you could say someone was either pro or anti but I loook at CCSVI as an unproven medical hypothesis put forth by Dr. Zamboni . Maybe sometimes some of us are talking about two different things?

Conversely scorpion, those of us who are pro-CCSVI aren't in favour of people getting it. People who are pro-CCSVI believe in both its existence as a medical condition and that it plays an important role in MS. People who are anti-CCSVI generally say things like "let us assume CCSVI is actually a medical condition" and "CCSVI as an unproven medical hypothesis put forth by Dr. Zamboni."

So I happen to think that I am on solid footing, etymologically speaking, that you are such a bug.

[Cece]

Conversely scorpion, those of us who are pro-CCSVI aren't in favour of people getting it. People who are pro-CCSVI believe in both its existence as a medical condition and that it plays an important role in MS. People who are anti-CCSVI generally say things like "let us assume CCSVI is actually a medical condition" and "CCSVI as an unproven medical hypothesis put forth by Dr. Zamboni."

So I happen to think that I am on solid footing, etymologically speaking, that you are such a bug.

Jugular is right....
Although I don't think scorpions are bugs. More of an "arthropod." http://en.wikipedia.org/wiki/Scorpion

Another way to be pro-CCSVI is to be in support of research into this potentially ground-breaking development.

Another way to be pro-CCSVI is to have had an MRV done, as I did a year ago, or an ultrasound, and see for yourself what your jugular veins look like. It is hard to deny a condition that you can see for yourself in the images of your own neck. Then the question of what percentage association MS is to CCSVI becomes moot, because it's a 100% in your individual case. And when I was shown the images of nearly entirely blocked jugulars on both sides, it was rather pro-CCSVI of me to say, I have damage in the organ that those veins are draining, I have an IR willing to open those blockages, I have the possibility to choose healthy flow over diminished flow, let's do it.

Cheer, would you consider adjusting the title of this thread? Quote marks indicate that this is something that Dr. Zamboni said, verbatim and translated from Italian. If you added on 'except within a study' I'd be happy enough.

It is unrealistic to expect all the answers to come out of Ferrera, or for them to be accepted if they do. We need all our researchers at work on CCSVI, and all of them publishing.

[Jugular]

Conversely scorpion, those of us who are pro-CCSVI aren't in favour of people getting it. People who are pro-CCSVI believe in both its existence as a medical condition and that it plays an important role in MS. People who are anti-CCSVI generally say things like "let us assume CCSVI is actually a medical condition" and "CCSVI as an unproven medical hypothesis put forth by Dr. Zamboni."

So I happen to think that I am on solid footing, etymologically speaking, that you are such a bug.

Jugular is right....
Although I don't think scorpions are bugs. More of an "arthropod." http://en.wikipedia.org/wiki/Scorpion

Another way to be pro-CCSVI is to be in support of research into this potentially ground-breaking development.

Another way to be pro-CCSVI is to have had an MRV done, as I did a year ago, or an ultrasound, and see for yourself what your jugular veins look like. It is hard to deny a condition that you can see for yourself in the images of your own neck. Then the question of what percentage association MS is to CCSVI becomes moot, because it's a 100% in your individual case. And when I was shown the images of nearly entirely blocked jugulars on both sides, it was rather pro-CCSVI of me to say, I have damage in the organ that those veins are draining, I have an IR willing to open those blockages, I have the possibility to choose healthy flow over diminished flow, let's do it.

Cheer, would you consider adjusting the title of this thread? Quote marks indicate that this is something that Dr. Zamboni said, verbatim and translated from Italian. If you added on 'except within a study' I'd be happy enough.

It is unrealistic to expect all the answers to come out of Ferrera, or for them to be accepted if they do. We need all our researchers at work on CCSVI, and all of them publishing.

I mostly agree Cece, except by normal parlance, I think a 'bug' would include a Scorpion. Because this was bugging me, I did a search on the meaning of the word "bug" and this is what I found:

http://en.wikipedia.org/wiki/Bug

Apart from that, like you, I'm a 100 percenter.

[1eye]

Entomologically speaking, when dealing with bugs it is best to be on a sure footing. You never know when you'll have to stomp your foot.

[scorpion]

Just to set the record straight when I was first trying to figure out a user name for the board I was going to pick Scorpio but if my poor memory serves me correctly it was already taken. I believe Scorpio would have been a better choice given that:

There is another phase that a Scorpio can take on: the Eagle; Scorpio in the eagle phase are the wise ones. Eagles soar the sky, seeing everyone else's havoc with his keen and intelligent eyes.

Ok off to enjoy the weather which has finally become MS friendly!

[Lyon]

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[HappyPoet]

Cece, a follow-up question if I may...

What good is a statistic of restenosis if it virtually always omits the time period covered? Is the period for one month, six months, one year, one and a half years, two years? I see a lot of different percentages, too. The rate needs to fall all the way below 3% to be comparable to Tysabri's risk of PML. Perhaps, realistically, at that percentage of risk, published in respected, peer-reviewed publications, the reports will be properly received in the public realm. And CCSVI be covered by Medicare.

Thank you.

[notJ, p-r combinations=7]

[cheerleader]

Soooooo---
Bringin' the wagon back 'round to the topic, which I've retitled "CCSVI is difficult to treat." Because this is a direct quote from the news article and Dr. Zamboni has said this to me, lots of doctors and the press. The problem is exactly what Happy Poet has asked, what about restenosis rates? Restenosis will occur in anywhere from 25-50% of patients treated, and this is why Dr. Zamboni says we do not just dilate your vein and "say goodbye." This is why ongoing care and follow up is important.

Dr. Zamboni's studies have gone the longest amount of time with follow-up--18 months in this study, where restenosis rates were 47% in IJVs and 4% in azygos veins. Note: Restenosis occured anytime in this 18 month period....2 days, 3 months, 7 months or 18 months. There is no set pattern, and everyone is different....which is why ongoing care is essential.

Sixty-five consecutive patients with CCSVI, subdivided by MS clinical course into 35 with relapsing remitting (RR), 20 with secondary progressive (SP), and 10 with primary progressive (PP) MS, underwent percutaneous transluminal angioplasty (PTA). Mean follow-up was 18 months. . The risk of restenosis was higher in the IJVs compared with the AZY (patency rate: IJV, 53%; AZY, 96%;

http://www.fondazionehilarescere.org/en ... zioni.html

The Stanford patients (who are able) are going back in for their 2 year check ups. Jeff had his 2 1/2....all good and flowing. Still in remission, doing really well. He will have followup on this the rest of his life. Fingers remain crossed.
cheer

[Lyon]

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