For many patients, angioplasty is NOT in their best interest

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For many patients, angioplasty is NOT in their best interest

Postby griff » Fri Apr 29, 2011 5:22 am

I have just come across this news on angioplasty (NOT for IJV or azygos):

For many patients, angioplasty is NOT in their best interest
By Jenny Thompson on 11/19/2010 "The landscape of medical history is littered with procedures not in the patient's best interest."

That's not just me saying that. It's actually a quote by an official from a Michigan hospital talking about using balloon angioplasty to place a stent in an artery.

Your doctor will probably describe angioplasty as "routine." But when you consider the full range of this routine (including drugs you'll be required to take), you can't help but wonder if it's really in your best interest.

Perception vs. reality

First, let's look at a realistic assessment of the "benefits" in having a stent inserted in an artery.

You may be surprised by this 2009 New England Journal of Medicine study that followed nearly 2,400 patients. Half the subjects received drug therapy (statins, aspirin, beta- blockers, etc.), while half received drug therapy and angioplasty.

After five years, researchers found no significant difference in rates of death, heart attack, or other major events. And this research confirmed similar results of a 2007 Department of Veterans Affairs study.

No significant difference. Hmmm...

Unfortunately, that message hasn't trickled down to patients.

In a recent Annals of Internal Medicine study, researchers surveyed more than 150 angioplasty patients and 17 cardiologists.

Nearly 90 percent of the patients said they believed the procedure reduced their heart attack risk. And almost three-quarters said they believed they would have a heart attack within five years without the angioplasty.

Compare that with these striking responses from cardiologists...

More than 60 percent said they believed that angioplasty benefits were simply to relieve symptoms--nothing more. And most amazing: When given two hypothetical scenarios where angioplasty provided no benefits, more than 40 percent of the doctors said they would still go ahead with the procedure!

Vicious cycle

Relief of symptoms such as shortness of breath is an important benefit for some angioplasty patients. But it might be difficult to talk many of those patients into having the procedure if they knew their heart attack risk would remain unchanged.

And, even worse, that they would have new risks to consider...

These days, stents are "drug-eluting." That is, they're treated with a drug that reduces scarring and inflammation of the artery that's sometimes caused by stent insertion.

But drug-eluting stents sometimes cause blood clots.

Yes, you read that right--your stent that is being inserted specifically to reduce your risk of blood clots might actually CAUSE a blood clot!

But don't worry. Your doctor already knows that. And that's why he will prescribe a blood thinner like Plavix or Effient. Unfortunately, all blood-thinning drugs increase the risk of bleeding. In fact, Effient comes with a black box warning about the risk of death due to "unexplained or excessive bleeding."

So in the end, this "routine" procedure can turn out to be fairly complicated. And for many patients, it becomes down-right dangerous--and provides no real benefit.

If your doctor suggests angioplasty, ask why. Unless it's to relieve some serious symptoms, figure out if there's a better option for you, like one that actually decreases your chance of having a heart attack.



So, the issue what I tried to raise here is many of the people who decide to go for angioplasty can expect lots of repeated angioplasties during which his veins get damaged (scarring or collapse of the veins) and most of those angioplasties will be done to correct the damages done by the previous angioplasties. And in a five years time the patient might not experience any benefits compared to his cohorts. It is a question....
Last edited by griff on Mon May 02, 2011 2:47 am, edited 1 time in total.
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Postby blossom » Sat Apr 30, 2011 4:47 pm

not any comments on this by anyone. but by some who had angioplasty for ccsvi it did turn out not too rosey. just a fact. a fact that cannot be ignored.

but the impact ccsvi treatment had for the good of some--that is a fact too that can not be ignored.

so, more research and ways of preventing vein damage etc. has just got to be solved. the path is there we know that. just more to consider than some of us realized. but, hopefully soon.

good article griff.
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Postby MegansMom » Sun May 01, 2011 12:01 pm

You cannot compare arterial TPA of very small coronary ARTERIES with large venous procedures. S
Size, pressure and wall anatomy are completely different.
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
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Re: ccsvi

Postby griff » Sun May 01, 2011 12:10 pm

blossom wrote:
so, more research and ways of preventing vein damage etc. has just got to be solved. the path is there we know that. just more to consider than some of us realized. but, hopefully soon.

that is what I think. IRs involved in CCSVI play down the risks associated with angioplasty. They know that angioplasty has to be repeated several times and with every angioplasty damage is done to our veins. As I read someone's post in a different thread it says that 20% of the angioplasties result in scarring. I read somewhere else that collapse of the veins can happen even after lots of injections. I have never thought of that before.

After five years, researchers found no significant difference in rates of death, heart attack, or other major events. And this research confirmed similar results of a 2007 Department of Veterans Affairs study.

It is very alarming to me. We are talking about heart angioplasty to prevent possible heart attacks where the link between stenosed veins and heart attack is well established, not just a weak hypothesis as we have between MS and CCSVI. Angioplasty made NO difference for patients.

And we have all the other issues specific to IJVs and azygos that we are not even aware of at the moment. An experienced IR told me that he has never done angioplasty in these veins in his whole life. This is an unchartered territory. We can screw up a vein in someone's leg, not a big deal, but how about a vein that carries blood from someone's brain.
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Re: ccsvi

Postby sou » Sun May 01, 2011 1:52 pm

griff wrote:We can screw up a vein in someone's leg, not a big deal, but how about a vein that carries blood from someone's brain.


And this is what many people think: Why live with such an important insufficient vein? Why not try to bring the cerebral flow and perfusion back to normal?

Of course, this is a matter that only the doctor may resolve.
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Cece » Sun May 01, 2011 2:17 pm

We can screw up a vein in someone's leg, not a big deal, but how about a vein that carries blood from someone's brain.

Either the veins are important or they are not. If it is big deal to screw up the vein that carries blood from the brain, then it is an equally big deal to have mother nature having screwed them up on her own.

sou made the same point as I was typing this :)
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Postby blossom » Sun May 01, 2011 8:16 pm

griff, the point of the article is still the point be it veins or arteries. i agree with you. no bashing just pointing out things. that maybe some of us wish we would have researched better. because early on i was takeing it that-ok if i restenose they just go back and open it up again-no big deal. WRONG it is big deal if your vein becomes so damaged you loose it. now, you not only have these symptoms they named ms but you could be in bigger trouble and not a quick departure from this world as a heart attack but something else added to your misery.

but, bottom line, nobody twisted my arm. would they have to twist my arm now-oh yeah. but, i would hope at least soon because of the pioneer little lab rat me and others are they can come up with something to stop the damage that occurs when they are doing a treatment that has helped and is helping many. but, until then, it's still up to each indidual. and even though there was info. available about the risks when went, it was so new and now there are a lot more people with a little time under ther belts reporting good and also things griff is pointing out that can and is occuring.
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Re: ccsvi

Postby griff » Mon May 02, 2011 2:23 am

griff, the point of the article is still the point be it veins or arteries. i agree with you. no bashing just pointing out things. that maybe some of us wish we would have researched better. because early on i was takeing it that-ok if i restenose they just go back and open it up again-no big deal. WRONG it is big deal if your vein becomes so damaged you loose it. now, you not only have these symptoms they named ms but you could be in bigger trouble and not a quick departure from this world as a heart attack but something else added to your misery.[/



I agree with you blossom. When I started reading these threads here in tims I thought that it is a forum that tries to help MS patients to make a better decision regarding CCSVI operation, so I can get info on risks and benefits. Now, sometimes I feel that it is only a marketing tool to promote CCSVI operations and nothing can be said about potential complications and risks involved. Before I had any surgery I would try to collect info on what are the risks and potential benefits of that surgery. Here, most of the people paint a rosy picture about the operation and I do not know what is their aim with that. It is also the responsibility of the IRs who do not mention any of these risk factors to us when we consider the operation. I agree with Rici who said that angioplasty is not for eveyone, just like with other surgeries, some patients should be advised not to go for it or wait a little bit.


And this is what many people think: Why live with such an important insufficient vein? Why not try to bring the cerebral flow and perfusion back to normal?


Now, having gone through the operation I have some questions about it:
- Is our current situation of veins really that bad? Lots of healthy people have this abnormalities according to the Buffalo study
- What is abnormail with veins is not clear. Even vascular specialists do not agree on this. Vein system is very specific for each person.
- If we treat these conditions shouldn't we care about safty? Just because we have MS we are not experimental rats.
- No one questions that angioplasty should be an option for MS patients, but patients should be well advised by IRs about the potentiol risks and benefits. I see that we have high expectations for benefits but low expectations for risk. That is due to unfair informations by IRs involved in CCSVI operation.

You cannot compare arterial TPA of very small coronary ARTERIES with large venous procedures. S
Size, pressure and wall anatomy are completely different.


Yes, that is true, but then if I follow your logic, we can not compare veins in our legs to veins in our neck. IRs involved in CCSVI do that.
As IRs have no experience with IJVs and azygos the only thing they can do is to compare this procedure to their experiences with arteries and other veins. If scarring is a big deal with arteries and other veins, why haven't IRs involved in CCSVI operation raise this issue as a potential risk factor? We have already experienced it.

All said, I have some concerns about the effectiveness of the CCSVI operations after reading this article. Veins are even more elastic so nothing can keep them in their new position (except for the unwanted stents) and trauma to the vein wall is also present here. There are also valves involved whose roles are still unclear today.

And even if we can complete the angioplasty well, one question remains open and that is the result. This is comparing those patients with a risk of heart attack who went thorugh angioplasty to those who did not:
After five years, researchers found no significant difference in rates of death, heart attack, or other major events.
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Postby 1eye » Mon May 02, 2011 6:15 am

IRs have no experience with IJVs and azygos
spoken like an IR yourself! I am getting very tired of baseless innuendo, accusations, and speculation from anonymous experts on this forum. I do have the choice not to read it and believe me, I am seriously considering it.

Far from being a marketing tool for CCSVI procedures I feel it has been targeted by drug vendors, neurologists, MS Society people, and the patients can hardly be seen or heard over the din of their advice and crowing every time a neurologist manages to get published or a newspaper accepts a "story".

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Postby griff » Mon May 02, 2011 7:36 am

1eye wrote:
IRs have no experience with IJVs and azygos
spoken like an IR yourself! I am getting very tired of baseless innuendo, accusations, and speculation from anonymous experts on this forum. I do have the choice not to read it and believe me, I am seriously considering it.

http://ccsvi.org

Sorry, 1eye if you felt this as an accusation, but what is wrong with this statement???? Do they have experience with IJVs and azygos??? As far as I see IRs are in a learning phase too. I am just really sad that as a patient I have to do a research on safty issues and potential complications and my IR who did the procedure does not talk about it. This is my own experience and please let me share this with others. I might help others with it. You might have different experience and that is also welcome.

I have just raised some issues and all I got is attack from other posters. I do not mind it but I would be happier if we could provide answers to ourselves and others for these questions. Am I the only one who is interested in safty issues?
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Postby MegansMom » Mon May 02, 2011 8:07 am

The organ affected is the most important thing to consider. We are talking about the BRAIN !


CCSVI causes hypoxia. Hypoxia is smothering. Of course in CCSVI it is low level but it is still oxygen deprivation of the brain. Then combine it with other things that have been proven such as HYPO-Perfusion.

Hypoperfusion means the brain is not getting adequate fuels. Besides OXYGEN, it includes GLUCOSE and all the other things that cells need such as hormones, vitamins, etc. Also the metabolic waste products build up, these are not good for brain cells to function.

I believe that we will get better at treating CCSVI over time but you must consider that your brain is being damaged everyday while you wait.

Weighing the relatively low risks associated with PTA (as we know it now) I believe that you risk more brain injury by waiting, certainly if you have recently been diagnosed. But it's everyones own call as to their personal decision.

So my suggestion is if you are on the fence, find out if you have CCSVI and to what extent and then make up your own mind.
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby Cece » Mon May 02, 2011 8:14 am

Cat, you are as always a voice of reason.
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Postby griff » Mon May 02, 2011 8:47 am

MegansMom wrote:The organ affected is the most important thing to consider. We are talking about the BRAIN !

CCSVI causes hypoxia. Hypoxia is smothering. Of course in CCSVI it is low level but it is still oxygen deprivation of the brain. Then combine it with other things that have been proven such as HYPO-Perfusion.

Hypoperfusion means the brain is not getting adequate fuels. Besides OXYGEN, it includes GLUCOSE and all the other things that cells need such as hormones, vitamins, etc. Also the metabolic waste products build up, these are not good for brain cells to function.



That is a valid and very valuable point and I appreciate it; however, if things would be so simple we would not be here. The reason why I raised safty issues is that some of us or many of us had operations and we ended up in a worse condition due to restenoses or scarring. If that happens then operation put us in a worse condition that no one wanted. It can be all of us problems if we have to repeat angioplasty many times in the future and if we do not consider this aspect. So, it is a question of how well the operation is working.

I try to weigh what other IRs are saying too. How can we know that hypoperfusion is present in our case? Many of them say that collaterals can take some of the role of IJVs and azygos. Another thing is the Buffalo study. Why do many healthy people have CCSVI?

I understand your reasoning and I accept it, but when I listen to other IRs, their opinion seems also reasonable to me.
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Postby MegansMom » Mon May 02, 2011 7:16 pm


I try to weigh what other IRs are saying too. How can we know that hypoperfusion is present in our case? Many of them say that collaterals can take some of the role of IJVs and azygos. Another thing is the Buffalo study. Why do many healthy people have CCSVI?


First I must mention that BUFFALO (BNAC) included family members. These are birth defects, most probably no different than inheriting your mom's wavy hair, you might have gotten her CCSVI too. As CCSVI goes on E1 is produced and causes fibrosis and hypertrophy which make it get worse.

Also, as much as I love my daughters IR, he is a plumber. They are not
vascular internists, and there is more to CCSVI than plumbing. Learn about
Endothelin1
can make perfusion get lower over time. It causes
vein changes.

Hypo perfusion has been proven. Slow transit time causes hypo perfusion. All CCSVI patients have hypo perfusion to varying degrees as to the location and extent.

I have a simple analogy.
Picture a theater ( this represents the brain) with five entrances (arteries) IN and clearly defined five EXITS Out. (veins)

You have a 1000 people that represent blood and everyone has a drink ( glucose) and popcorn (oxygen)
Picture there is a normal amount of time in the theater for the drinking and eating and this is ( brain metabolism) just for information sake 70% of a
persons glucose is used by the brain and 35 % of oxygen too. This is considerable.
So now picture that 2 or 3 or 4 of the exits are blocked or partially blocked. Everyone has Used up their drink and popcorn and there is quite a lot of
rerouting to get the people out and just to confuse it as people leave a new
1000 people are trying to come in with their drinks and popcorn and they are trying to push in as the original people are trying to get out! Making people bump each other and drop some stuff (iron)

Now picture a neurologist that yells "fire".......just kidding !
This extremely simplified but it can give some people a way to understand some of the dynamics.

Anyway I think people need to assess risks but should not be afraid because in most cases the risks are quite low and the procedure is safe. They should discuss things with their IRs and read read read CCSVI info., such as on CCSVI.org .

And a word of caution double check the validity of all studies from BNAC

MAKE SURE STUDIES USE VENOGRAMS TO PROVE OR DISPROVE CCSVI ( not dopplers or MRV) and validation of statistics is done completely and the title of the study matches the results I have seen quite a lot of SKEWING study data with CCSVI from them.
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MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby griff » Tue May 03, 2011 6:07 am

Thanks, Cat. I think you did an excellent job. It was very educating what you wrote about problems caused by CCSVI.

I might be naiv, but I assume that most of the researchers and doctors are working with good intention on finding a cure for MS. Maybe one of the reasons why they are still oposing CCSVI theory is the lack of proper info, but maybe there are some other aspects of the problem that we might not consider. Anyway, I really hope that CCSVI theory will bring us closer to solving the puzzle.

My original intention of posting this article was not to question the CCSVI theory, (that could be another issue) but to highlight that according to some studies angioplasty is not effective for people with heart disease when possible heart attack is considered. I think it is quite interesting considering that it goes against common expectation. As we know there is the same situation with interferon. In a five years of period it just does not work.

As we do not have enough experience with opening up IJVs and azygos, I might think there could be the same situation here (even if the theory is right). The other issue what I just read here in a different thread that there is a 20% scarring rate with angioplasty for arteries. I know IJVs and azygos are not arteries, but what if scarring is a big issue here as well. It would be worth having more info on past experiences with scarring as I think that could make things worse if the theory is right. Ather issues might also arise as we already experinced it. There was a time when dr Sinan's technique was applauded here, now his approach is widely rejected. unfortunatelly, many people's veins regret it.

MegansMom wrote: First I must mention that BUFFALO (BNAC) included family members. These are birth defects, most probably no different than inheriting your mom's wavy hair, you might have gotten her CCSVI too. As CCSVI goes on E1 is produced and causes fibrosis and hypertrophy which make it get worse.

.
I am just wondering why family members with CCSVI did not develop MS. Don't they have iron deposits due to stenoses? How about the non-family members? If I accept that Dr Zivadinov is unbiased then his conclusion was different from what we think about CCSVI. It seems to me that Dr Zamboni is backing off from his old position when he introduced CCSVI as a major cause of MS.



Hypo perfusion has been proven. Slow transit time causes hypo perfusion. All CCSVI patients have hypo perfusion to varying degrees as to the location and extent.


Regardles of MS, why hypoperfusion is not treated in many (most) countries?

MAKE SURE STUDIES USE VENOGRAMS TO PROVE OR DISPROVE CCSVI ( not dopplers or MRV) and validation of statistics is done completely and the title of the study matches the results I have seen quite a lot of SKEWING study data with CCSVI from them


To do a double blinded study with venogram seems not likely to me. I do not think that venograms of healthy people can be easily approved.


Also, as much as I love my daughters IR, he is a plumber. They are not
vascular internists, and there is more to CCSVI than plumbing. Learn about


I agree. With all of my respect for IRs, identifying certain vascular problems and drawing conclusion about connections between vascular problems and brain problems is just beyond them. This is why I think we would need other specialists on board.
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