looking for someone liberated and still getting worse
- fogdweller
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Re: looking for someone liberated and still getting worse
[quote="thisisalexI mean im looking for a person, who is not restenosed, and this is proved by a doctor.
My aim is to find a person like that.
That would mean Zamboni was wrong
as soon as we dont have anybody like
alex[/quote]
Wow, it is not anywhere near that simple. Remeber, Avonex, Betaserone, et al only reduce the relapse rate by about 35%, yet there is clearly a treatment benefit that justifies $15,000 treatment per year with frequent injectections and side effects etc. If the liberation procedure turns out to have a benefit for 30% more than the placebo effect, even if the other 70% are not helped at all, clearly it would be worth it. And determining this might take 3-5 years. Those of us who are older don't like that long time lag idea, but if proof of the effect on progression is required, that is what is gong to be required.
My aim is to find a person like that.
That would mean Zamboni was wrong
as soon as we dont have anybody like
alex[/quote]
Wow, it is not anywhere near that simple. Remeber, Avonex, Betaserone, et al only reduce the relapse rate by about 35%, yet there is clearly a treatment benefit that justifies $15,000 treatment per year with frequent injectections and side effects etc. If the liberation procedure turns out to have a benefit for 30% more than the placebo effect, even if the other 70% are not helped at all, clearly it would be worth it. And determining this might take 3-5 years. Those of us who are older don't like that long time lag idea, but if proof of the effect on progression is required, that is what is gong to be required.
I guess I don't understand your point. Isn't MS progression a symptom? And unfortunately, most neurologists like to look at lesion load as the basis for progression. However, you can have a head full of lesions and not have a single symptom (or disability). My personal criteria for success is measured disability, EDSS or the like. Whether I get 1, 10, or zero new lesions is of little consequence to me.Billmeik wrote:There are a lot of people who it does not appear will be helped by this treatment.
I think there is a big confusion between ms symptoms and ms progression.
If your progression is stopped it is a huge help.
All of dake's patient get a follow up mri 2 months after liberation. I'd like to see a paper that looks at disease activity over that time and the 1 year.
I have three stents, they are still patent as of my check-up, and I have not re-stenosed (not sure how I could have with a stent). However, my walking ability, and consequently my EDSS score, is worse than it was seven months ago. However, would I do it all over again--absolutely. My opinion is that it is too soon to tell whether this was successful or not. My disability did not happen over night, and I do not expect any improvement or stabilization to happen over night. Even if it has nothing to do with MS, collapsed and mangled jugular veins probably weren't doing me any good anyway.
So if you are looking for someone who has been liberated, has not re-stenosed, but has gotten worse (at 7 months anyway), here I am.
One hole in the argument may be: it appears that valve abnormalities in the azygous are underdiagnosed. So someone may be liberated in the jugulars, not restenose there, but continue to worsen...because there is a backwards valve in the azygous that missed detection.
Zamboni has been right on a few things so far, IMO, so I have some trust in him, and one stand-out fact is that he had been able to find azygous stenosis in far more people than what the other researchers have been finding.
Dr. Sclafani, in just twenty patients, went from not finding azygous stenosis at all to finding it in three of the last four patients he'd seen since he made some changes in how he approached the angle of the CT scan of the azygous arch.
(Apparently the azygous has an arch.)
So, really, the research is in such early stages that it is hard to draw completely solid conclusions from the positive or the negative information we're finding, much as we'd all would like to.
Zamboni has been right on a few things so far, IMO, so I have some trust in him, and one stand-out fact is that he had been able to find azygous stenosis in far more people than what the other researchers have been finding.
Dr. Sclafani, in just twenty patients, went from not finding azygous stenosis at all to finding it in three of the last four patients he'd seen since he made some changes in how he approached the angle of the CT scan of the azygous arch.
(Apparently the azygous has an arch.)
So, really, the research is in such early stages that it is hard to draw completely solid conclusions from the positive or the negative information we're finding, much as we'd all would like to.
"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
Cece- I see after post we are on the same page , though I am wordier--per usual
Dr. Sclafani has said that he would like to go back and recheck the azygos of the first few people he treated, knowing what he knows now.
He told a story of how he took a scan to Dr Z who pointed out a very interesting valve abnormality that Dr Sclafani had not even noticed before. Dr Sclafani then changed the way he does his scans now to look for a different angle to be sure he does not miss something like this again.
Those of us who were at Stanford were treated before a lot of this was known. The experience and knowledge base grows by the week. Dr Zamboni sees azygos issues in a huge majority of his patients, about over 80%. Dr dake only saw an azygos issue in a few of his stent patients. Did he miss this?
It would be naive to expect expertise in the first few patients. With a surgical procedure they have to do operations before they know what the best approach is going to end up being. It is not possible to do it to animals first like it is with pharmaceuticals. This means the first people treated are going to be the best guess treatment based on other related experience. In this case, "the treatment" is already done for other reasons so it is not strictly new, BUT details like exactly how to do the scans and what to expect in these specific veins are simply not known.
They will be once this is done with many patients over several years. Even then surgery is not a "go in and it is perfect" deal. We all know people who have had 3 knee surgeries or multiple back surgeries, or even hysterectomies with repairs that needed revision later. While this is not really "surgery" but rather angioplasty, these principles still apply.
Is it possible that 80% of the patients treated at Stanford had azygos issues and only a few of them were caught? Simple lack of experience and inability to see the different valves? It seems possible to me, considering how much Dr Sclafani kindly reports he is learning, it seems more likely to me now than ever.
Radek has pointed out many times the possibility that upper jug stenosis may be a result of lower occlusion that is missed. How big a role did that play in Dr Dake's patients?
I know for certain that they treated an upper jug in Katowice with a stent when they could not keep it open with a lower repair. In other words it is not true that all upper jugs stenosis is a result of a lower collapse, BUT in many cases it appears that it may be and it is possible that some people who were treated had only a partial treatment.
I personally stated many times on this forum that those of us treated first would not get what would turn out to be the best treatment. I still believe that is true.
I am still happy I went. I still do not have flexor spasms but I am a very very disabled person. I did not expect to get "better" (though it would have delighted me if I did)
What I find amazing is this concern about "people who do not get better" and the idea that such a thing would be proof of some kind. It is not. This is still experimental BOTH ways.
ANd this even more than with a pharmaceutical because not only does the hypothesis need to be proven but the skill of the surgeons has to be developed!!
If a particular patient fails is it because the hypothesis is wrong or because the surgeon was not skilled yet?
Dr. Sclafani has said that he would like to go back and recheck the azygos of the first few people he treated, knowing what he knows now.
He told a story of how he took a scan to Dr Z who pointed out a very interesting valve abnormality that Dr Sclafani had not even noticed before. Dr Sclafani then changed the way he does his scans now to look for a different angle to be sure he does not miss something like this again.
Those of us who were at Stanford were treated before a lot of this was known. The experience and knowledge base grows by the week. Dr Zamboni sees azygos issues in a huge majority of his patients, about over 80%. Dr dake only saw an azygos issue in a few of his stent patients. Did he miss this?
It would be naive to expect expertise in the first few patients. With a surgical procedure they have to do operations before they know what the best approach is going to end up being. It is not possible to do it to animals first like it is with pharmaceuticals. This means the first people treated are going to be the best guess treatment based on other related experience. In this case, "the treatment" is already done for other reasons so it is not strictly new, BUT details like exactly how to do the scans and what to expect in these specific veins are simply not known.
They will be once this is done with many patients over several years. Even then surgery is not a "go in and it is perfect" deal. We all know people who have had 3 knee surgeries or multiple back surgeries, or even hysterectomies with repairs that needed revision later. While this is not really "surgery" but rather angioplasty, these principles still apply.
Is it possible that 80% of the patients treated at Stanford had azygos issues and only a few of them were caught? Simple lack of experience and inability to see the different valves? It seems possible to me, considering how much Dr Sclafani kindly reports he is learning, it seems more likely to me now than ever.
Radek has pointed out many times the possibility that upper jug stenosis may be a result of lower occlusion that is missed. How big a role did that play in Dr Dake's patients?
I know for certain that they treated an upper jug in Katowice with a stent when they could not keep it open with a lower repair. In other words it is not true that all upper jugs stenosis is a result of a lower collapse, BUT in many cases it appears that it may be and it is possible that some people who were treated had only a partial treatment.
I personally stated many times on this forum that those of us treated first would not get what would turn out to be the best treatment. I still believe that is true.
I am still happy I went. I still do not have flexor spasms but I am a very very disabled person. I did not expect to get "better" (though it would have delighted me if I did)
What I find amazing is this concern about "people who do not get better" and the idea that such a thing would be proof of some kind. It is not. This is still experimental BOTH ways.
ANd this even more than with a pharmaceutical because not only does the hypothesis need to be proven but the skill of the surgeons has to be developed!!
If a particular patient fails is it because the hypothesis is wrong or because the surgeon was not skilled yet?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
- JoyIsMyStrength
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- thisisalex
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Mary,
you are right, as usual.
Of course there could be errors at the treatment, and at the diagnostic process.
Lets redefine my vision statement:
Lets find someone with PERFECT haemodynamics in their veins, who has a NEW active relapse after the surgery.
The problem is that this state is only theoretical, because we just cant prove it ...
thank you for your opinion... and ... Hail to the pioneers!
you are right, as usual.
Of course there could be errors at the treatment, and at the diagnostic process.
Lets redefine my vision statement:
Lets find someone with PERFECT haemodynamics in their veins, who has a NEW active relapse after the surgery.
The problem is that this state is only theoretical, because we just cant prove it ...
thank you for your opinion... and ... Hail to the pioneers!
Alex the problem is if someone does have a relapse (like myself) we are always looking for evidence for a restenosis. I am being checked next week, if it looks normal then I have had a relapse with perfect hemodynamics.
I have to say with my CCSVI treatment I had improvements like better energy, colour in my face, not feeling MSy and L'hermittes plus arm weakness has gone (the weakness could have been going anyway as they were from a relapse)
I still have continued to have mild optic neuritis pain and vision issues which hasn't changed.
I feel deep down MS is an immune thing plus a Vascular thing just from my own experience. Maybe copaxone plus sorting out vasuclar issues might be enough to sort everything.
I have to say that my relapse did come straight after a chiro visit where my neck was cracked. I know in the past this has affected me before.
I am coming out of the relapse now though so hopefully no permanent damage has been done.
I have to say with my CCSVI treatment I had improvements like better energy, colour in my face, not feeling MSy and L'hermittes plus arm weakness has gone (the weakness could have been going anyway as they were from a relapse)
I still have continued to have mild optic neuritis pain and vision issues which hasn't changed.
I feel deep down MS is an immune thing plus a Vascular thing just from my own experience. Maybe copaxone plus sorting out vasuclar issues might be enough to sort everything.
I have to say that my relapse did come straight after a chiro visit where my neck was cracked. I know in the past this has affected me before.
I am coming out of the relapse now though so hopefully no permanent damage has been done.
- thisisalex
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Gibbledygook,gibbledygook wrote:Hi Alex,
I had stents bilaterally one of which has a new narrowing from 11mm to 3mm. To my surprise Professor Dake is happy that there is sufficient flow and a big enough opening not to warrant any ballooning. I am now 32 weeks pregnant. From week 20 or so as my blood pressure collapsed and after circa 20 weeks of excessive and probably harmful cacao consumption I started to suffer an ongoing relapse. Or at least the myoclonus which had magically disappeared after the stent operation have come back even worse than they were before. So I have now clearly deteriorated since the operation.
i went through your topic, and really sorry for your relapse, especially that youre pregnant.
Low blood pressure could be dangerous even for a healthy person, lets hope that was the problem...
keep going!
alex
- ozarkcanoer
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mrhodes,
The clinical trials and studies absolutely need to be done to refine the imaging and to make sure the angioplasty/stenting is performed in the best possible way. I am super glad that Dr Dake will be studying the procedure, how best to treat malformed veins. That is crucial and has nothing to do with MS. And I am glad that BNAC is studying the correlation between CCSVI and MS and is refining their diagnostics. I hope that all the CCSVI publicity means that more and more clinical trials and studies are done. But I do hope that doctors like Dr Sclafani are released to perform the procedure so they can also contribute all their amazing brains to this whole problem. Anecdotal reports of "I got better" or "I got worse" will not convince any neuros. Trials and studies are what Dr Zamboni has asked for, so we can read new papers in the coming year detailing the statistics in much the same way Dr Zamboni did. Or papers that will discuss the issues of the procedures and design of new stents.
ozarkcanoer
The clinical trials and studies absolutely need to be done to refine the imaging and to make sure the angioplasty/stenting is performed in the best possible way. I am super glad that Dr Dake will be studying the procedure, how best to treat malformed veins. That is crucial and has nothing to do with MS. And I am glad that BNAC is studying the correlation between CCSVI and MS and is refining their diagnostics. I hope that all the CCSVI publicity means that more and more clinical trials and studies are done. But I do hope that doctors like Dr Sclafani are released to perform the procedure so they can also contribute all their amazing brains to this whole problem. Anecdotal reports of "I got better" or "I got worse" will not convince any neuros. Trials and studies are what Dr Zamboni has asked for, so we can read new papers in the coming year detailing the statistics in much the same way Dr Zamboni did. Or papers that will discuss the issues of the procedures and design of new stents.
ozarkcanoer
I am in complete agreement with Marie....
Do you happen to know how often Simka is finding azygous lesions, to compare with Dake and Zamboni's figures?
Do you happen to know how often Simka is finding azygous lesions, to compare with Dake and Zamboni's figures?
"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