Resistance from the establishment.

[oscar]

Why does my GP seem to dismiss CCSVI and the Liberation Treatment as some kind of witchcraft? Tysabri has far more horror stories attached to it.

[concerned]

tysabri or whatever has like 5 deaths out 63,000 patients, how many patients have had the liberation procedure?

[fernando]

Not exactly the liberation procedure but angioplasty has a record of hundredths of thousands.

And nobody dies from an echo doppler.

Have you got tested, concerned? If not, do you plan to?

[Lyon]

.

[concerned]

My mother has MS, not me. I just take care of her. She had an ultra sound that found "significant narrowing, but no stenosis". There is no one here who can do anything else and she would be unable to take an airplane or anything like that as she is in the penultimate EDSS score or maybe the one before that i forget.

Doesn't angioplasty have a like 1-2% chance of death? how many deaths have occured from that?

http://www.health.state.ny.us/press/rel ... giopla.htm
http://www.medicalnewstoday.com/articles/188398.php

those are the first couple of results from a google search on deaths from angioplasty. Did you mean a record of hundreds of thousands of deaths?????

[ikulo]

Not exactly the liberation procedure but angioplasty has a record of hundredths of thousands.

http://www.nhlbi.nih.gov/health/dci/Dis ... Risks.html 2% risk of death multiplied by "hundreds of thousands" equals what?

It's not fair to compare a coronary angioplasty to a jugular vein angioplasty. The 2% complication rate relates to the former, we do not have sufficient information on the complication rate to the latter. Maybe in a few years we will have a complete picture, but debating the possible complication rate is futile without rigorous studies.

[fernando]

Concerned,

I mean that there are hundreds of thousands of procedures and even with a 1% to 2% death rate in coronary arteries nobody (maybe with the exception of Colin Rose) thinks it is "unsafe". It is safe relative to other procedures (say heart surgery) or not so safe compared to using band aids. But it helps people, at least it is part of the solution.

Sorry to hear that about your mum. Let's have hope.

[fernando]

Concerned,

Thanks for the info.

A minor point. For those doing elective angioplasty the death rate is as low as 0.43%

The report also evaluates outcomes for patients undergoing elective angioplasty. This group of patients -- which excludes those who are in shock, have very low blood pressure, or have had a heart attack within 24 hours -- are more medically stable. The statewide death rate for elective patients was 0.43 percent.

Maybe this % could be more representative. But I'm no doctor.

[Cece]

She had an ultra sound that found "significant narrowing, but no stenosis".

concerned, sometimes these narrowings are caused by a membrane or valve lower down. Was there reflux that showed up on the doppler? Either way there is an argument that results like this should be followed with a venogram. The idea is that the narrowing is not the problem in itself but is a result of low blood flow through the vein. Once the cause of the low blood flow is fixed (a valve malformation lower down?), then even during the procedure the upper narrowing can be seen filling out to normal. Valve malformations and membranes and such can be missed, both during imaging and during venogram, because the catheter in the venogram can lift the valve out of the way so that results look normal during the venogram but are not, once the catheter is out and the valve is back down. I am not sure where you are but urge you to look for someone local willing to look into this if you and she are interested.

As for the safety concerns, this is why Dr. Sclafani is going to be doing a 200 patient safety study. Once we know his results, we will be better able to answer these concerns for ourselves as well. It is not correct to extrapolate safety results from one area of the body to another, nor one patient group to another. MSers are in general younger and healthier than anyone undergoing arterial angioplasty. But the procedure is also done in proximity to the brain, so we do need to know if there is any risk to the brain from this. There are known risks to using anti-coagulants, which are frequently prescribed after the procedure.

[cah]

As was said here before, the death rates of coronary angioplasty of the arteries cannot be used for the CCSVI treatment. That's because the arteries aren't narrowed but clogged. These blood clots (don't know if that's the exact english phrase) can get loose through the angioplasty procedure, resulting in embolism. That's the main risk. In a narrowed vein with otherwise healthy blood, there's nothing that can get loose.

Moreover, you can't compare the death rates of coronary angioplasty of 1995 with those of 2010. There were huge improvements in procedure and material.

[oscar]

I hope to get scanned for CCSVI soon and will make up my mind as to whether I go for the liberation treatment. Hopefully the procedure will be fine tuned by then. In all the research i'v done, as long as stents ain't involved its relatively safe but restenosis is the main worry.

[frodo]

A minor point. For those doing elective angioplasty the death rate is as low as 0.43%

Besides, I would like to add that the proper comparison would be the risk of having problems during the angio against the risk of not having it at all. If the second is higher, I think is worthy to take the risk.

[concerned]

Not exactly the liberation procedure but angioplasty has a record of hundredths of thousands.

And nobody dies from an echo doppler.

Have you got tested, concerned? If not, do you plan to?

I didn't make the initial comparison. People here are the ones who are saying "doctors do this procedure all the time but they won't do it to me because i have MS."

[concerned]

A minor point. For those doing elective angioplasty the death rate is as low as 0.43%

Besides, I would like to add that the proper comparison would be the risk of having problems during the angio against the risk of not having it at all. If the second is higher, I think is worthy to take the risk.

http://medicalmyths.wordpress.com/2007/ ... l-therapy/

[nicknewf]

concerned, the article you cite is interesting. Still, I look at the possibility of disease remission and symptom improvement optomistically; and in the context of something versus nothing, I don't see much upside in waiting - only downside.

Let's hope that this treatment is shown to be more effective than PCI in stable patients.