my honest and realistic point of view

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

my honest and realistic point of view

Postby Asher » Sun Aug 15, 2010 11:45 am

This is part of a mail I sent a friend who asked me what he may expect from the 'Liberation Treatment':

Dear,..., bare in mind that my story is N=1. I truly believe (believe, not know) that MS is not a decease but a basket of symptoms that have many different causes. Not every animal with 4 legs, a tail and long ears is a donkey. In the same token, not every 'MS' is the same 'MS'. In one case the cause could be a bacterial or a viral infection, in another it may be an immune system that went crazy, a genetic disorder or perhaps CCSVI. And perhaps many other things too. This is why MS research is so elusive and the disease outcomes are so different for different people. Following this logic, no surprise that the response to treatment is very different from one person to the other. Then comes the next complicating factor that if you bombard the meyaline producing cells long enough, the original disease transforms into again a different disease that hardly responds to known treatment.

Long introduction, but what I am really trying to say is that whether or not MS is caused by CCSVI is not yet proven, neither in general nor in individual cases. And the reports on the effect of CCSVI treatment are all over the place; from no change, through some improvement for 3-7 weeks and back to square one, to remarkable and lasting improvements. RR people seem more likely to see improvement and SPMS and PPMS less likely. Where this leaves you and what you may expect from this treatment is a complete unknown.

In my case (SPMS for 3 years), I saw some improvement in vitality, walking, libido, erection and warn hands and feet for about 10 days. Except warmer hands and feet, all is gone now. Why, I really don't know. I had no stenosis but faulty valves. Was it a placebo effect, or will the effect of the treatment amount to nothing more then stopping the disease? Or are the valves screwed up again, I just don't know. Only time will tell and I guess no one knows, not even Prof. Zamboni. In summary, if you can afford to do the treatment, why not, you have nothing to lose. My recommendation is not to rush into stenting. First see whether the treatment has a real effect that lasts longer then 10 days to rule out placebo. If it does work you can always consider stents.

I hope this is not discouraging, it is not my intention. I am past the point in life where I can give you anything but my honest and realistic point of view.
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Postby Daisy3 » Sun Aug 15, 2010 3:34 pm

Asher,

What you write is not a waste of time at all. It is a realistic viewpoint based on your experience and knowledge.

We don't know what the hell MS is caused by, as you said it could be a few different things, or something that we don't even suspect yet.
I agree with you that people should have the option and go ahead with the 'treatment', if it brings them some relief from this damned to hell disease, well then, surely even ten days are great to a person trapped in a body that stops doing what it should.

Speaking for myself, being married for only a year now, and MS has been a part of that journey for nine months of it. I hate it, and honestly wish there was some way we could get rid of it-any way at all...I would try it.

At least CCSVI has some solid support behind it. So people should go for it..

I hope that you find out why the improvements went away after ten days...keep us posted:-)
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Postby 1eye » Sun Aug 15, 2010 6:01 pm

I assume you think the benefit you got was placebo effect? Do you not think
what you experienced is repeatable? Do you not think you should get retested? Drs. are just finding out about this stuff.
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Postby hopeful2 » Sun Aug 15, 2010 7:54 pm

Hey Asher, I think you said it very well. It's important to post realistic assessments of the CCSVI procedure for people to see. I'm sorry to hear that the improvements didn't last long for you.

I experienced some positive symptom relief that you saw first-hand, and then lost some of the improvement. But right now I'm doing better than before the procedure. And I feel that I know what works to improve my health if I need to get some kind of treatment in the future.

I hope you find a way to get the symptom relief back---and not for just 10 days! Take care.

Patrice
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Re: my honest and realistic point of view

Postby drbart » Sun Aug 15, 2010 10:11 pm

Asher wrote:In my case (SPMS for 3 years), I saw some improvement in vitality, walking, libido, erection and warn hands and feet for about 10 days. Except warmer hands and feet, all is gone now. Why, I really don't know. I had no stenosis but faulty valves.


Hey Asher, good to hear from you!

I'm guessing that there's a lot of restenosis very quickly, and that it's under-reported. There may also be an effect from the size of balloons used. See the video of Sinan's talk at the SUNY symposium last month - those big balloons and their use for both expansion and finding anomalies (they show up as indentations on the soft balloons) might be a big change that a lot of IRs adopt.

http://www.youtube.com/watch?v=aLeRe1ZuUbE
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Postby 1eye » Sun Aug 15, 2010 10:42 pm

Of course, when you've been SPMS for 8 years or so, you may not worry too much about symptom reversal; just the end of progression. To some, that may not come either, but I think I have seen enough anecdotes to know that in most cases results are positive, for as long as the dilation lasts. And if I get back to square one, I just have to plan my next move: to stent or not to stent.

But I think people who are at the most disabled end of the scale, those are the ones that should be treated first -- the ones that have very little to lose, I think have the most to gain, as they are the ones who are closest to losing hope, will, and life.

That's if we try to do anything but first come first served.
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Postby Asher » Mon Aug 16, 2010 12:17 am

1eye, no, I did not say it was placebo, I said I don't know what the hell is going on there, and I added no one knows.

Thanks for the kind responses, I am aware of the fact that many of us who are pionering this theory share pretty much the same hopes and frustrations.
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Postby 1eye » Mon Aug 16, 2010 8:08 am

Sorry just my own bandwagons. I wish you the best of success. If it were me, I'd try to heal up whatever pain I still have (for however long that takes) and then try a workout (with physician's OK). I don't know what else to do. I ain't no doctor. If I was on a blood thinner I'd really have to take it easy, at least if I was as disabled still as I have been, because when I was on Plavix I bruised real easy. Now that I have the wheelchair I guess I'd be better than last time (I have 3 stents from a heart procedure), but I'd still have plenty bruises because I'm too clumsy. But hey, after six months of Plavix or whatever blood thinner, the stents are part of you. That's why it's compared to marriage.

The first six months maybe your blood is thin and the danger of restenosis is greater. I don't really know but the Heart Institute had me trying to exercise with a roomful of heart attack victims. It was very light but included good light cardio and 2 lb weights to warm up with. After four weeks of two hour-long sessions a week, they graduate you (few people fail). It is exercise anybody can do but they want to make sure you do do it. Anyway I started a couple months after the wee visit to the Cardiac Unit (attack), and I think it helps with your stents wearing in. We had a Swedish physiotherapist, and the music was ABBA. I normally don't like ABBA but I guess it was ok.

But once you stop the Plavix (or whatever), you won't bruise so much, the blood is thicker and that helps your veins stay patent. So I'd say you are more or less out of whatever woods you were in on account of the procedure, after you get taken off blood thinners (if you were even on them).

If you get stents, don't do any jumping for a while.
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Postby selkie » Mon Aug 16, 2010 3:58 pm

You know this is all so new - I remember my friend who is a doctor of audiology but is also an expert on dizziness (vertigo) and also works with neurologists, neurosurgeons as well as ENTs put it to me this way; (and she thought CCSVI sounded very credible (even though it's technically outside her field, she's familiar with the brain, nerves & spinal column).

Imagine a garden hose that has been lying in the sun with a huge, heavy rock on it - say from 30-60 years. Suddenly someone notices and removes the rock. Where the rock was the hose is squished flat & no water gets through. Now you can manipulate this hose, run a stick thru it, etc. and get it to re-inflate to it's normal size. But because the structure of the hose had become so accustomed to being flattened where the rock was, gradually it may recollapse. Maybe it will, maybe it won't. If it does, you have to decide is the hose strong enough to endure another manipulation?

I think that is a fair analogy - not exact of course - of what happens with collapsed veins. It may not be enough to just balloon or stent, I think doctors need to know why the vein collapsed in the first place as it seems from the reports I've seen it can be because they're twisted around themselves, have a bone or carotid bulb protruding into them, & I'm sure other reasons.

My ENT who does several neck dissections was very interested in CCSVI when I told him about. But he said in his opinion, the stenosis would not come from inside the vein as he's done many neck dissections and very rarely seen the kinds of clots and blockages one finds in arteries.

Whatever - I'd like to hear what an IR says also - but this is so new. Because your improvements went away - I'd definitely say it warrants being retested (think of the garden hose analogy), maybe they missed something the first time around or maybe it is re-stenosis. I don't know. I hope you can find out.

best, s.
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Postby Cece » Mon Aug 16, 2010 5:55 pm

selkie wrote:Imagine a garden hose that has been lying in the sun with a huge, heavy rock on it - say from 30-60 years. Suddenly someone notices and removes the rock. Where the rock was the hose is squished flat & no water gets through. Now you can manipulate this hose, run a stick thru it, etc. and get it to re-inflate to it's normal size. But because the structure of the hose had become so accustomed to being flattened where the rock was, gradually it may recollapse. Maybe it will, maybe it won't. If it does, you have to decide is the hose strong enough to endure another manipulation?

Elastic recoil is the term Dr. Sclafani has used. :)

But he said in his opinion, the stenosis would not come from inside the vein as he's done many neck dissections and very rarely seen the kinds of clots and blockages one finds in arteries.

This makes it sound likes he's expecting it to be plaque build-up, like in the arteries, instead of a congenital vascular malformation.

Dr. Sclafani also has said that in forty years of practice, he'd never seen any of the sorts of venous oddities and malformations that MS patients are presenting with.

Asher, take care & if you can get a follow-up visit, please do...it's not just the risk of restenosis, there is also the possibility of thrombosis.
"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 Asher » Tue Aug 17, 2010 1:57 am

thank you for all the kind remarks addressing my personal experience. Sure, I will go for followup, but this thread is not about me and I'm afraid the point I'm trying to make here is getting lost:

I believe, I repeat, BELIEVE versus KNOW for a fact, that MS is a complex multi factor phenomenon. For some of us CCSVI may or may not be the root cause of our symptoms. In cases where CCSVI does correlate with the symptoms we don't even know whether it is cause or effect. What I'm saying is that we just don't know yet. We may have a hunch, but we simply do not know it for a fact, at least not as yet.

To me it seems like this forum has developed a 'faith science' bias with a one shoe fits all message i.e. ccsvi is the the culprit and the advise we often give people is "if it did not work for you, rest, give it time, or it is re-stenosis, give it more time, it will work, the body will heal itself". Sure, it could be any of those, and perhaps not.

Now why is this so imortant? Well, people need to go into this with realistic expectations and understant that CCSVI is not (yet) the holy grail. Importantly, scientists must continue to explore every available avenu, including stem cells, and yes, even next generation DMDs because we're not there yet with a unifying theory for MS.
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Postby Cece » Tue Aug 17, 2010 12:01 pm

Ah. You are right, CCSVI still needs to be supported by the research, however it is my belief and the extent of my intellectual understanding of all things CCSVI that it is in fact the unifying theory for MS.

But not proven yet.
"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 Asher » Wed Aug 18, 2010 3:39 am

Cece, I sure hope so, I have every interest in this being so. But Ikaros (Greek mythology) believed too, and ... I think we are not there yet with a unifying MS theory. It is no coincidence that even cancer research has progressed faster than MS research.
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Postby foreignlesion » Wed Aug 18, 2010 1:00 pm

Asher,

I really like your viewpoint, and I have felt for a long time that there needs to be more realistic viewpoints expressed here. There are far too many people believing that there is no MS, only CCSVI.

I am not a skeptic. I believe CCSVI exists and there is a major correlation with MS. I believe CCSVI causes symptoms that are seperate from MS. I believe angioplasty is a necessary corrective procedure. I believe despite "liberation", many of us will continue to suffer the effects of MS, and there is a high possibility that CCSVI causes an immune response that can not be reversed at this time.

At this time, I do not put all my hopes into CCSVI. Research must continue into CCSVI as well as other avenues. It is with this reasoning that I continue to support the MS Society, neurologists, and yes, even the much hated Dr. Freedman. I do not support everything they say or do (their stance on CCSVI has been pathetic to say the least), but I do support their continued efforts to end MS and help those who suffer.

As for Concerned, Lyon et al., there have been many times when I fully agree with what they have to say and their reasoning of bringing a balance to the furor of those of us who are pro-CCSVI. There are other times when I fully agree that their comments are needlessly antagonistic, much like the sadistic prick Colin Rose who quite obviously takes pleasure in antagonizing people who are chronicly ill. I also think the same could be said of any of us here. It is definitely an intense and passionate time in the world of MS and the tensions are high.

For those of you who continue to fight the fight, thank-you and keep up the good work. As for myself, I had to pull myself away several weeks ago due to the toll it has taken on my health. Oddly enough, less than a week after I withdrew, my province announced their support. Hopefully this stage will be over soon and we can stop fighting and start healing, which is something I think we all need desperately. In the meantime, please continue to push, just don't hurt yourselves doing it.
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Postby Asher » Wed Aug 18, 2010 2:24 pm

foreignlesion, you got my point, in substance and in spirit. We need to be combating MS, not the neuros, not the MSSs, not even big pharma. There is no conspiracy and we need them all to keep doing their respective thing to the best of their ability without antagonizing them.
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