New Wheelchair Kamikaze Post on the Current State of CCSVI

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

Postby ozarkcanoer » Mon Jun 14, 2010 4:11 pm

Marc,

You are very eloquent and reflect my feelings on CCSVI.

Just one small semantic correction. CCSVI&MS should be called a hypothesis and not a theory. Richard Dawkins in his writings on evolution vs creation "theory" points out that a theory in science is considered "true" (what the heck does that mean, LOL). So CCSVI&MS is now just a hypothesis.

Also about the anger, the exuberance, the lawsuits and youtube videos : they scare me and make me want to divorce myself from this whole CCSVI movement. But yesterday my sister-in-law and I hosted MStery party number 11 for BNAC and raised well over $3000.00 !!! We are still getting checks so I think it will be about $3500.00.

And yes, the whole body of neurologists does not constitute the enemy. Plus the NMSS grants to sites who are trying to disprove CCSVI I believe is a good thing. That is what science is all about.

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Postby concerned » Mon Jun 14, 2010 4:27 pm

I am pleased with many of the viewpoints expressed in this thread. Although I'm accused of being anti-ccsvi, I really just think that science should be left to scientists.
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Postby marcstck » Mon Jun 14, 2010 4:42 pm

I'm glad to see that my post has prompted an intelligent and wide-ranging discussion. Everyone is entitled to their opinion, we are all mature adults, and there are no villains here. Unless of course you disagree with everything I've said, in which case you are a poo poo head.


ozarkcanoer wrote:Marc,

You are very eloquent and reflect my feelings on CCSVI.

Just one small semantic correction. CCSVI&MS should be called a hypothesis and not a theory. Richard Dawkins in his writings on evolution vs creation "theory" points out that a theory in science is considered "true" (what the heck does that mean, LOL). So CCSVI&MS is now just a hypothesis.

Also about the anger, the exuberance, the lawsuits and youtube videos : they scare me and make me want to divorce myself from this whole CCSVI movement. But yesterday my sister-in-law and I hosted MStery party number 11 for BNAC and raised well over $3000.00 !!! We are still getting checks so I think it will be about $3500.00.

And yes, the whole body of neurologists does not constitute the enemy. Plus the NMSS grants to sites who are trying to disprove CCSVI I believe is a good thing. That is what science is all about.

ozarkcanoer


Big congrats on the BNAC fundraising success! That's the kind of activism that will lead to results...
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Postby Lyon » Mon Jun 14, 2010 4:52 pm

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Postby magoo » Mon Jun 14, 2010 4:59 pm

Let's not forget the IMPROVEMENTS when opening those blocked veins. If Jeff felt nothing after his procedure we all would not be here.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby patientx » Mon Jun 14, 2010 5:11 pm

Hopeful10 wrote:
patientx wrote:
marcstck wrote: If your kitchen sink was backed up, but not affecting any other item in your kitchen, then only a plumber would be called. If that backed up sink overflowed and shorted out the electrical outlets in your kitchen, you'd need to call an electrician.

Hey, good (counter)analogy.


It is a good analogy, but not as a counter-analogy. If your sink overflowed and shorted out the electrical outlets, it's true that you'd need to call an electrician, but you'd only do so after the plummer diagnosed and fixed the problem with the sink. The plummer would need to take the lead, and only after he was done would the electrician be helpful.

Returning to the studies funded by the MS Societies, the vascular specialists should be leading or co-leading the studies. However, most of the studies are being led solely by neurologists.


You know, I had edited my post to take out the word "counter." I guess it didn't get saved.

But this analogy could be taken further, ad nauseum. For instance, if you didn't have an obviously overflowing sink, but a leaking pipe that caused a problem, and all you saw was the lights or an outlet didn't work, you would first call an electrician. Hopefully, he would trace the short to a leak, and then recommend calling a plummer.

In the end, MS manifests itself as a neurological disease. And I don't see the importance being placed on who leads these studies. All of the teams for these studies include experts in vascular imaging.
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Postby ozarkcanoer » Mon Jun 14, 2010 6:25 pm

I've had a real chuckle over all these plumbing and electrical analogies !! Now if I could just get you guys to help diagnose our leaky roof that has caused us countless misery for 20 years. Is it the roof or the chimney or the tuckpointing or leaky bricks or the downspouts or just what the heck ?

If neurologists want to treat the symptoms of MS or any other condition for that matter they should be looking for the answer(s) to pain. I think neurologists know less about headaches than about MS.

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Postby JCB » Mon Jun 14, 2010 8:39 pm

Concerned,

That is exactly what I want, scientific evidence that either supports or denies the roll of CCSVI in MS. I just haven't had the opportunity to meet a neurologist that gives it the time of day. If you could convince me that we are going to get unbiased facts out of these studies I would be a much more fun guy to be around.
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Postby blossom » Mon Jun 14, 2010 10:46 pm

i love to read the wheelchair kamikaze. he has charisma and a way of telling it all. i agree with a lot of what he is saying BUT as he said this is about opinions and a lot of my opinions were formed by the way the medical community, the ms society, the news media etc. responded to ccsvi. i never recall reading this was "THE SILVER BULLET" . BUT, it certainly had enough merit to be mentioned or investigated with an open mind. BUT NO-every neurologist i took the research to which was more than 1 or 2 would not even give it a look or they were plain rude or ignorant. then i went looking for vascular dr.'s and ir's. some took an interest but guess what-they took it to their neuro. to take a look-guess what-not interested. the ms society to me when i contacted them about it was a real joke even letting on they were not aware of it. i feel they would not even be doing what they are if they would not have a lot of arm twisting. i could go on and on. i totally agree that there is a lot to be learned the good and the bad. we need science, we need trials, all the above. it is what is at this point. BUT, when i read and listened to dr. shelling and read of others that were trying very hard to get attention to the vascular connection to ms and these dr.'s were discredited and everything else. dr. noda, same thing. i get really upset that this was ignored and shoved under the rug. i can not make myself believe that some of the above mentioned societies etc. were not aware of dr. shelling's research. and if they were not then they were doing a real bad job of truly wanting to help us. just think where we could have possibly been by now. SO YEAH, i feel postal but i'm not going to strap something onto my wheelchair and go crazy. BUT, LOOK AT DR. ZAMBONNI, he hasn't breezed through this thing. it took him some time to find a neuro. interested but he did. i hope we all find one we need them. thank God for the dr.'s that are onboard with this. AND, i do agree about carrying a big stick and walking low. i did that most of my life and for a little hick from the sticks i did quite well. BUT, i learned that big stick has to be beat hard at times. SO, BOTTOM LINE IS, we are all big girls and boys-we all can read-most of us with brain fog or whatever can still make decisions with what knowledge available to us and do what each of us have to do. YEAH, i wish my ms was just diag. i would wait. BUT, the science of this will go on and on. there may be regrets, but i feel the odds are pretty good. OH, got news today that a guy i knew with ms passed away. GUESS WHAT he died from? the drug he had been takeing to slow down his ms screwed his heart up amongst other things. he took a chance and he lost. would have been nice if he could have chosen to take the drug or try ccsvi. SO, THAT'S MY STORY AND I'M STICKING TO IT. science is science but COMMON SENCE holds a lot of weight too. SO, i don't feel they will have to call in the troops to control us. (not yet anyway) TALKS CHEAP IT TAKES MONEY TO BUY WHISKEY.
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Double Standard

Postby nicknewf » Mon Jun 14, 2010 10:51 pm

Maybe I'm just obsessed and cooler heads should prevail, but ...

There was a quote from the letters to the editor of Macleans read into Parliament in Canada tonight which talks about neurologists referring stroke victims to vascular surgeons and interventional radiologists to fix holes which occur in 25% of the population, without any double blinded studies ever having been done, and without any "proof" that it helps.

This situation is a pure double standard; the veins at issues are outside the blood brain barrier, the complication risk is low and the procedure is over 25 years old.

I want the science completed too; but there is absolutely no good reason to prevent those willing from getting treatment and following and documenting their progress for the purposes of establishing standards of care or as part of a national clinical trial. People whose disease is progressed to the point that they could never be in a trial, should be able to ask for the treatment if they want it on compassionate grounds.

The harping on a need for more proof before we get the proof is both counter productive, and unfair as an impediment to treatment if desired. Further prevalence studies in particular, are unfair in this manner because 1. they establish nothing from a patient care perspective for existing MS patients; because 2. more reliable data is obtained by performing the treatment, i.e. at this stage, few MS patients interested in treatment for CCSVI are going to believe they do not have stenosis until they get confirmation by venogram.

Occluded veins should be treated.

By way of example, if there happened to be 1000 people in Canada who wanted this treatment option, they could all go to 13 designated hospitals (one in each jurisdiction) and sign consent forms to have their data monitored and collected and used as part of a study with no guarantee of success. It does not need to be a double blinded study; as placebo effect can be ruled out over time, and placebo effect is being tested in the US - Canada can't do all the research. Each hospital can have 2 teams doing 10 per week, and after 4 weeks the trial is concluded. The results are compared against current efficacy of comparable patients who have not received the treatment or who are awaiting treatment. all 1000 get venograms followed by venoplasty if indicated. There is a pool for those without any venous anomalies indicated (pool A - probabably between 30 and 200), there is a pool for those who cannot be helped by venoplasty due to severity of occlusions (pool b - probably 100). Then there are 700 people in pool C to watch and compare against the control MS population.

The purpose is to show if it is good and whether it is better or lower risk than existing treatments like the CRABs drugs; not how good, or even how to perfect it. Merely to show whether or not it is undeniably better than the crab.

The study reports upon completion of the final venogram/venoplasty and every month. Those with suspected restenosis can get the veins opened again as part of the study.

If within the first week (260) the incidence of CCSVI is not overwhelming convincing; the trial can slow down and wait for more evidence.

Within 3 months, if it is not overwhelmingly clear from the data that there is some benefit and that the treatment is better than all existing drugs - then patience and sanity will return but everyone will have to wait for further work involving double blinded trials. If the results are as expected based on "anecdotal evidence" which I prefer to call clinical accounts, it will become standard practice, and academics can continue to study how to make it better - but not whether or not to do it. We a crisis response - not an ivory tower response.

To that point, we can simply obtain the consents and combine the data from the 1000 people already treated. This is a large sample size with which to answer the single question - is there benefit/does the benefit out-perform existing best practice. In fact, with such a large sample we probably only need a single vector to use for the basis of comparison - mean time to relapse by age and gender. If this treatment is truly revolutionary, the group which received treatment will have a statistically significantly lower relapse rate as compared to the general population, and if not - well - not and that will be sad.

Double blinded studies are hardly ever done for things which clearly work and which are mechanical in nature. Because, it is unethical for doctors not to provide someone the best care once they know that it is the best care.

So let's find out if this clearly works - asap. There are times to do chemistry and times to make dinner so people can eat - now is a time to eat.

Then again, maybe I'm just obsessed and cooler heads should prevail.
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Postby Billmeik » Mon Jun 14, 2010 11:22 pm

All other reports are strictly anecdotal, and as such have little credence in the eyes of science.


I think this is a little condescending to Simaka (95%) jordan (88%) Kuwait (92%) and several others. Im writing to you from Poland where My doctor wife and I backed off the 12mm stent, but I really can[t deny some improvements from angio. Drr Kostecki who I saw has seen 184 patints and found 84% stenosis, and in a healthy control group 14%..while there is a suprising shallow racism exhibited in the medical mind that blindness whouldnt be passed on to patients.

Really mark, you dont have to believe this in order for it to work. Just try it and quit mimicking the words of some wise but ultimately destructive neuro. Talk to me after and see if my attitude of 'do it just in case it's true' changes your thinking. Self evidence matters.

Metting patients before and after it is a calmed spasticity that really shows. Hands that no longer wobble, bladders that no longer scream, gaits that are calmer...don[t be afraid.
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Postby nicknewf » Mon Jun 14, 2010 11:25 pm

[Bill - I think Mark has tried it. :? ]
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Postby marcstck » Mon Jun 14, 2010 11:42 pm

Billmeik wrote:
All other reports are strictly anecdotal, and as such have little credence in the eyes of science.


I think this is a little condescending to Simaka (95%) jordan (88%) Kuwait (92%) and several others. Im writing to you from Poland where My doctor wife and I backed off the 12mm stent, but I really can[t deny some improvements from angio. Drr Kostecki who I saw has seen 184 patints and found 84% stenosis, and in a healthy control group 14%..while there is a suprising shallow racism exhibited in the medical mind that blindness whouldnt be passed on to patients.

Really mark, you dont have to believe this in order for it to work. Just try it and quit mimicking the words of some wise but ultimately destructive neuro. Talk to me after and see if my attitude of 'do it just in case it's true' changes your thinking. Self evidence matters.

Metting patients before and after it is a calmed spasticity that really shows. Hands that no longer wobble, bladders that no longer scream, gaits that are calmer...don[t be afraid.


Bill, your argument would make a lot more sense if I hadn't had the liberation procedure done on March 10 of this year. Blockages were found, but were unable to be opened via angioplasty. I'm certainly not mimicking any wise neuro, as my wise neuro was strongly against my having treatment.

As far as Simka,, Jordan, and Kuwait go, they haven't published any papers detailing the results of their work. Therefore, by definition, the results are anecdotal. Simka, Zamboni, Zivadinov, and Sclafani (who did my procedure) have all called for clinical trials to be done.

You've made many assumptions in your post, none of which hold water.

If you actually read the post I made on the blog without any predisposed bias, you'd see that I never advise anybody to not get the procedure, I simply say that patients should make their treatment decisions based on verifiable facts, not on hope or the hyperbole that rules the day on most Internet sources.

Having said that, I wish you nothing but the absolute best out of your procedure in Poland. Get home safe and sound, and I hope you can report wonderful things to us upon your return...
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Postby sbr487 » Tue Jun 15, 2010 3:28 am

Mark, I am a bit surprised at the tone of your article given that CCSVI was able to correlate symptoms you have been having with clear vascular issues in the body.

There are 2 distinct aspects about CCSVI
1) impaired blood flow behind MS theory
2) approach towards correcting 1)

Lack of favorable results in 2) does not mean failure of 1) in anyway.

this shouldn't come as a surprise, but patients need to be keenly aware that the liberation procedure is not always the panacea that its most fervent advocates often assert it to be.


Given that quite a bit of knowledge is still evolving on the CCSVI and liberation procedure, it would be incorrect to pass judgement at this time ("liberation procedure in the current form" would have been more preferable).

Lack of expected results in CCSVI, in my opinion, might not be due to total flaw in the theory itself but probably because we are still grappling with some unknowns here.
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Postby L » Tue Jun 15, 2010 4:57 am

marcstck wrote:As far as Simka,, Jordan, and Kuwait go, they haven't published any papers detailing the results of their work.


Sorry to butt in again, but Simka has published: http://www.ncbi.nlm.nih.gov/pubmed/20351666
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