How dangerous is the Liberation treatment? - short/long term

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

How dangerous is the Liberation treatment? - short/long term

Postby adamt » Thu Mar 25, 2010 5:18 am

My doctor has told me having this procedure with stents is very dangerous.

Due to the stent migrating you can have heart attacks, blot clotting, etc.

So i was wondering how dangerous is having the liberation treatment?

has anyone died from being liberated?

how great are the rsisk?

is it only with stents?

thanks
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Postby eric593 » Thu Mar 25, 2010 6:05 am

Have you read the sticky at the top of the page entitled: Sticky: Known Risks/Complications of Angioplasty and Venous Stenting. It lists all the problems with treatment that are known by forum members.

If you haven't read the stickies at the top of the page, I recommend you read them all - there is some very helpful information posted up there and it could also answer questions you may have.
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Re: How dangerous is the Liberation treatment? - short/long

Postby frodo » Thu Mar 25, 2010 6:36 am

adamt wrote:My doctor has told me having this procedure with stents is very dangerous.

Due to the stent migrating you can have heart attacks, blot clotting, etc.

So i was wondering how dangerous is having the liberation treatment?

has anyone died from being liberated?

how great are the rsisk?

is it only with stents?

thanks


In fact, what Zamboni calls the "liberation treatment" normally refers to an angioplasty, and not to stenting. Angioplasty is much safer but has the problem of possible restenosis.
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Postby Jason » Thu Mar 25, 2010 7:07 am

From what I have read the Liberation Treatment involves ballooning of the veins to expand them to the original size, half who have this done see the vein shrink again in 12-18 months thats why some places use the stents.
9 people have died from Tysabri, I tried Mitox and it afected my heart, so everything we try has risks, you could fall out of bed trying IBT, so you will have to think about your quality of life.

I am going to False Creek in a couple weeks, then will look at what I want to do next.
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Postby Merlyn » Thu Mar 25, 2010 11:57 am

Running a test for iron metabolism does not have any risks! It might tell you that you have an underlying problem with iron loading! I believe that if you have an iron loading problem such as hemochromatosis or iron loading anemia, you need to know that otherwise you risk further health problems.
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Postby lucky125 » Thu Mar 25, 2010 12:47 pm

Although there is risk with any invasive procedure, this one is pretty low.

With just balloon angioplasty, I felt ZERO pain or discomfort during or after the procedure.

Definitely check the sticky, but that's my 2 cents.
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby shye » Thu Mar 25, 2010 2:05 pm

Jason
Who is keeping statistics that indicate tht HALF of those who had angioplasty need to have it redone within 12-18 months???? Few doctors have been doing it that long even! This half figure does not sound right to me. I've seen no person posting who has had it redone. Please verify.
Thanks
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Postby Jason » Thu Mar 25, 2010 2:31 pm

Dr. Zambonie in the press release said that 54% had to have it redone.
This is out of the 65 that he did.
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Postby muse » Thu Mar 25, 2010 2:46 pm

Hi@, some facts. Best Arne http://www.csvi-ms.net/en

Bologna–protocol by cheer: “……..Dr. Roberto Galeotti, Azienda Ospedaliero- Universitaria di Ferrara, vascular surgeon speaks as to the results of the endovascular Liberation treatment in an open label CCSVI study.

The endovascular approach uses the left femoral access, into the left renal vein, into the azygos, bilateral IJVs and bilateral VVs.

65 patients-
standard CDMS qualifications-

In each patient there were found valve malformations, stenosis, hypoplasia, with collateral pathways, In the azygos there were seen membranous obstructions, like what is found in Budd-Chiari syndrome. There was also a twisting of the arch, agennesis, , compression and reflux.

The procedure used a compliant balloon to open the veins. If the compliant balloon didn’t work, a high pressure balloon was used.

Venous pressure post procedure was improved, there was an improvement in vascular hemodynamics and rate of compliance.

There were no reports of thrombosis, some headache as a result

The azygos vein had a 4% rate of restenosis at 18 months- the only case was a retwisting
The jugular veins had a rate of 47% of restenosis at 18 months
The team is considering a redilation of the IJVs using open neck surgery or stents
…………..”

protocol: http://www.facebook.com/note.php?note_i ... 210&ref=mf
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Postby lucky125 » Thu Mar 25, 2010 2:47 pm

Jason,

Please double check your stat. I think that 47% of Zamboni's patients restenosed in the IJVs and needed to be reballooned.

Shye, only Dr. Zamboni has published results.
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby Johnson » Thu Mar 25, 2010 2:56 pm

shye wrote:Jason
Who is keeping statistics that indicate tht HALF of those who had angioplasty need to have it redone within 12-18 months???? Few doctors have been doing it that long even! This half figure does not sound right to me. I've seen no person posting who has had it redone. Please verify.
Thanks


Shye - The 50% number comes from Zamboni and his first "study". I believe it was actually 47% that had recurring stenosis.

Further to that, Brynn, Ella (Dovechick's daughter - and after only 5 days), Brainteaser (is that right? or was it wonky?), and as I vaguely recall, a few others have reported that they had to return to Poland after restenosis. I think that EDIT - Gici(?) - and whyrwehere's husband also had restenosis. I seem to recall Cece writing that it wasn't such a big deal to have the treatment again (that is my memory, so forgive me if I am wrong)

There are some dangers to going to Poland for the procedure - your taxi may be involved in an accident on the way to the airport, your plane might crash, taxi from airport, might slip on ice and bang head...

That was facile, but the risks of serious harm from angioplasty are minimal (less than 1% in my understanding), there are potential problems with blood thinners post-op - be careful shaving, chopping wood, etc., you don't want to bleed. If you are at risk for aneurysm, bleeding might not be able to be stopped. Discuss any venous or arterial abnormalities with the doctor if blood thinners are indicated.

With stents, there is the risk of stent migration. I know of two instances of that; Radek, who had to have open heart surgery to recover a stent, and a woman recently returned from Poland, who had a stent migrate to the clavicle area. I only know that from a referring Doctor. I do not know how she will resolve it. So, there is a greater risk with stents, including metal fatigue and fracture, and I have not been able to find out how long they will last. My understanding is that they have been used mostly in cardiac patients, and those with liver and kidney disease, who generally do not live a long time with or without stents. They are used in the leg veins too, but that is a different situation than the neck. My own feeling is not to expect them to last the rest of my life, and I think that they would have to be cut out in an open surgery. "They" are working on bio-absorbable stents (they might be my choice), and I'm sure, stents dedicated to CCSVI applications.

I hope I didn't muddy the water too much.
Last edited by Johnson on Thu Mar 25, 2010 8:49 pm, edited 1 time in total.
My name is not really Johnson. MSed up since 1993
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Postby shye » Thu Mar 25, 2010 4:00 pm

wow--somehow I had missed the restenosis, re-angioplasty statics. Okay, if approximately 50% have to be redone in 12-18 months, where does that leave one re: the next 20 years? 30 years? etc
Or are we assuming there will be perfections to what is done before then?
Certainly worth reconsidering, waiting, and using IBT for those of us who are doing fairly okay.

Possibly a tracking thread re: please post if restenosed would be helpful i think.
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Postby adamt » Fri Mar 26, 2010 6:42 am

thanks for all the replies, i think balloon angioplasty is the best option.

I know stents are very dangerous, and the fact if a stent migrated i would need open heart surgery , putsx me off stents very much,

I would much rather get worse and travel to poland again, then to have open heart surgery! plus all the dangers of stent igration.

lets hope my surgeon is happy with giving me balloon angioplasty
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Postby Merlyn » Fri Mar 26, 2010 12:53 pm

Elevated iron levels causes vascular damage. How do we know that lowering iron would not lower the possibility of restenosis? Also, it would be a lot cheaper, I cannot imagine having to redo this operation every 18 months. Who has that kind of moolah?


http://www.jctonic.com/include/minerals/iron.htm
Cardiovascular disease
The evidence from many scientific studies suggests that high iron levels (above 200 mcg per liter blood ferritin), may lead to an increase in the risk of cardiovascular disease. The increased risk may be due to oxidative damage to the heart and blood vessels and increased oxidation of LDL cholesterol.

A study published in 1998 in the American Journal of Epidemiology suggests that men and women, particularly those over 60, are at increased risk of heart disease if they have high levels of iron in their diets. The study, which was conducted in Greece, involved 329 patients with heart disease and 570 people of similar age who were admitted to hospital with minor conditions believed to be unrelated to diet. Results showed that for every 50 mg increase in iron intake per month, men over 60 were 1.47 times more likely to have heart disease than their peers. In women over 60, the risk was even higher, with a 3.61-fold risk for every 50 mg increase.7

In a paper published in 1997, Austrian researchers involved in the Bruneck study investigated the links between serum ferritin concentrations and the five-year progression of carotid atherosclerosis in 826 men and women aged 40 to 79 years old. Serum ferritin was one of the strongest risk predictors of overall progression of atherosclerosis, probably due to increased oxidation of LDL cholesterol. Changes in iron stores during the follow-up period modified atherosclerosis risk, in that a lowering was beneficial and further iron accumulation exerted unfavorable effects. High serum ferritin and LDL cholesterol also increased the risk of death from cardiovascular disease.8

Another study published in 1998 in the American Heart Association journal Circulation suggests that men with high levels of stored iron in the body have an increased risk of heart attack. The Study, which was done in Finland, involved 99 men who had had at least one heart attack and 99 healthy men matched for background and age. The results showed that those men with the highest iron levels had almost three times the risk of heart attack when compared with those with the lowest levels.9

Donating blood may help prevent a heart attack according to a 1998 study reported in the American Journal of Epidemiology. The results of a Finnish study showed that middle aged men who gave blood had an 88 percent lower risk of heart attack than those who had not donated. In a group of 2862 men, less than 1 percent of the blood donors had heart attacks compared with 12.5 percent of the non-donors.10

Cancer
Some studies have shown that iron can inhibit tumor development while others have shown that it might enhance it. Iron may increase the risk of cancer through its effect on free radical formation. In some population studies, high iron levels have been associated with an increased risk of throat and gastrointestinal cancers while others have not shown links.11 Results from a study assessing the links between body iron stores and cancer in 3287 men and 5269 women participating in the first National Health and Nutrition Examination Survey (NHANES I) found an increased risk with high iron levels.12 Some experts believe that the findings of increased risk are due to causes such as defects in iron metabolism, rather than diet alone.

Other disorders
High iron levels may also worsen the joint inflammation associated with rheumatoid arthritis. High iron levels may also lead to an increased risk of infection as iron is necessary for bacterial growth. Vitamin A supplementation may help to control the adverse effects in areas where infections are prevalent.13
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