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

Postby eric593 » Fri Apr 02, 2010 8:32 am

LR1234 wrote:I have been "liberated" and I think there should def be clinical trials but I don't feel Phase 1 2 and 3 that take 10 years should be conducted.

Unlike drugs I believe any complications would become apparant pretty quickly soon after the procedure and 2 years would be a long enough time to monitor its efficiency and any other long term complications. After that time period it should be made available for all (if benefits are shown).


I agree! Because of the wealth of anecdotal evidence, I think an initial small trial to make a few key determinations should be enough to justify allowing patients to get the testing/procedure while continuing trials go on.
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Postby fiddler » Fri Apr 02, 2010 8:45 am

CCSVI is a known condition - that is no longer being disputed by many: has been objectively determined based on the evidence. Some research and clinical results of CCSVI treatment have been published and show better results with fewer side effects than many of the drugs that are currently on offer or undergoing testing. Given that the placebo effect can be very real and that clinical trials showing longer term impacts will, by necessity, take a long time to do, how long should do you suggest people wait to see if it's real?

Skepticism is a good thing. I have been wondering myself how much of the improvement is placebo effects. But there are some long-term patients that continue to show improvements (not slowed progression, but improvements) after many months.

Given my circumstances, both my GP and neuro understand why I am going to Poland... because it's the most logical thing to do given the evidence. I have a feeling that is true for many people reading this forum.

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Billmeik » Fri Apr 02, 2010 9:01 am

I have not seen any evidence that CCSVI is the result of scar tissue buildup-and that doesn't begin to explain the proven existence of congenital valve malformations or "webb" blockages. No evidence has been presented so far that stenosis is the result of internal scarring.



there is growing evidence that ccsvi gets worse as ms gets worse. Lots of new papers.

For me the fact that I suggested a patient run study of all liberated patients mri's before liberation and now, and got ignored is a red flag. It's like people don't want to know the truth. Disease activity is pretty visible on mri, although the ms might have some momentum of its own even if ccsvi causes ms is true.
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Postby Cece » Fri Apr 02, 2010 9:25 am

Billmeik wrote:For me the fact that I suggested a patient run study of all liberated patients mri's before liberation and now, and got ignored is a red flag.


But who has the money for that? And without money or proper study procedures, the chances of getting meaningful results (and not just a slap-up of MRIs of not-randomly-selected people and those whose health care will cover an MRI afterwards at a nonstandardized point in time) is slim.

I agree with the earlier discussion that placebo is real, although it might have been more tactful to not be discussing it in Donnchadh's thread! Isn't it true that the placebo effect is more pronounced in m.s. patients than in other patients? (I would have to search for where I read that.) To me that fits right in with CCSVI theory -- that the reason placebo effect works so well is because the sense that we have some control over this particularly uncontrollable disease causes us to relax, which causes real effects on the blood flow in our jugulars.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Donnchadh » Fri Apr 02, 2010 10:23 am

Obviously, I can only speak for my own experiences....this was never meant to be a lab experiment.

My IR has planned on giving me a Doppler ultrasound & MRV at one month, three months, six months, and at one year post procedure to gauge differences.

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Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby happy_canuck » Fri Apr 02, 2010 10:24 am

Donnchadh,

I hope you are able to turn this around and start feeling better soon. Maybe you picked up a virus or something -- it may not be restenosis. My MS gets much, much worse when I have a bladder infection or my anemia worsens. I suggest you also get a thorough check up to make sure something else isn't happening.

Cheers,

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby Donnchadh » Fri Apr 02, 2010 10:31 am

Billmeik wrote:
I have not seen any evidence that CCSVI is the result of scar tissue buildup-and that doesn't begin to explain the proven existence of congenital valve malformations or "webb" blockages. No evidence has been presented so far that stenosis is the result of internal scarring.



there is growing evidence that ccsvi gets worse as ms gets worse. Lots of new papers.

For me the fact that I suggested a patient run study of all liberated patients mri's before liberation and now, and got ignored is a red flag. It's like people don't want to know the truth. Disease activity is pretty visible on mri, although the ms might have some momentum of its own even if ccsvi causes ms is true.


I think you have the cause and effect backasswards: CCSVI causes MS, not the other way around. The longer the CCSVI remains untreated, the more the MS progresses.

And who is going to pay for your proposed series of tests? Here in the USA, they are very expensive.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby Billmeik » Fri Apr 02, 2010 10:35 am

you sound like you are doing everything right. I don't think it's out of line for a patient to call for an integrative study where everyone who has mri's over time from liberation puts them in. But a researcher should do it.
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Postby Donnchadh » Fri Apr 02, 2010 10:35 am

happy_canuck wrote:Donnchadh,

I hope you are able to turn this around and start feeling better soon. Maybe you picked up a virus or something -- it may not be restenosis. My MS gets much, much worse when I have a bladder infection or my anemia worsens. I suggest you also get a thorough check up to make sure something else isn't happening.

Cheers,

Sandra


That's why I have a MRI/MRV and Doppler ultrasound scheduled this month: to get objective evidence whether or not the internal jugular veins have re-stenosis. Other then the damm MS symptoms, I feel fine-no sickness.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby thornyrose76 » Fri Apr 02, 2010 12:28 pm

Why do they even bother to use baloon angioplsty, stick tio t he stents!!! or am i missing something?!!! :evil:
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Postby ozarkcanoer » Fri Apr 02, 2010 12:45 pm

thronyrose, stents are riskier !!!! If I had my choice I would start out with just angioplasty (golly do I wish I had a choice, LOL). Dr Zamboni never used stents. I think that trials of the procedure will point the way to the best way to treat CCSVI. But anyone who can find an IR who will treat with stents, then go for it !!

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Postby Cece » Fri Apr 02, 2010 2:00 pm

50% of people who have the balloon angioplasty done don't need anything more than that...so, for those 50%, that's a very good choice.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby mose » Fri Apr 02, 2010 5:40 pm

Billmeik wrote:Disease activity is pretty visible on mri


is it really though? especially given the magnet strength of most common MRI machines.
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Postby ndwannabe » Fri Apr 02, 2010 8:02 pm

I don't know about placebo... If this placebo makes me walk better, think better, sleep better, overall function better - gimme some of that placebo!
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Postby Brynn » Sat Apr 03, 2010 10:17 am

Hi, I wanted to offer my two cents into this interesting conversation. I agree that the power of the human mind to alter it's reality would boggle our minds. I am offering my last thread concerning my "reversal." http://www.thisisms.com/ftopict-10663-.html I am heading back to Poland in a couple of weeks for a stent on my left IJV and assume that this might offer further evidence to how this will all play out. The one factor that truly seems beyond the ability of my mind to fool myself is my blood pressure. The fact that it went from always VERY low, to normal for those 5 weeks and then back to very low makes me believe that this is more than just my own mental contribution. So, look for updates at the end of this month. One last thought, I think that perhaps the long term validity of CCSVI might be best observed with the Stanford patients who are 6 to 12 months into their treatment, but who also predominately had stenting done and are not dealing with re-occluded veins. Many of them are mostly just updating their tracking thread now because they are very busy living their lives again! :D Have a great Easter weekend everyone, Brynn
41 years old, dx 1998, current EDSS 6.5
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