WORLD BALLONS

Liberation Procedure ( CCSVI )

Mona Alahverdi
Country: Denmark

1. What is CCSVI?

Chronic cerebrospinal venous insufficiency... it’s a chronic (ongoing) problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis (a narrowing) in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood cells and fluids into the delicate tissue of the brain and spine. Blood that stays in the brain too long creates “slowed perfusion”...a delay in deoxygenated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain. Plasma and iron from blood deposited in the brain tissue are also very damaging.

2. How is it related to MS?

The majority of MS patients tested so far has it? Over 500 MS patients in Italy have it. They were tested by Dr. Paolo Zamboni. Sixty five MS patients in the US have it. They were tested by Dr. Michael Dake. Twenty MS patients have it in Poland. They were tested by Dr. Mariam Simka. Two patients in Paris have it, they were tested by Dr. Claude Franceschi. 1700 patients and controls are being tested for it by Jacobs Neurological Institute at SUNY Buffalo.None of the normal patients (controls) tested has it. None of the patients with other neurological diseases have it. Only people with MS.

3. So..Maybe the MS lesions cause this. Chicken and egg and all that....right? Couldn’t the lesions do something to the veins?

Probably not. We already have a couple of medical models for the process of Chronic Venous Insufficiency in the brain and spine....because it happens in other places in the body, and we’ve known about it for years.

A. Chronic Venous Insufficiency in the legs. This is a process which begins with reflux and blockage in the veins of the legs. The deoxyginated blood can’t get back to the heart, and it causes edema (swelling) and leakage of red blood cells and fluid into the tissue of the leg. This creates petechiae (little blood spots), iron deposition into tissue, or venous ulcers (really gross lesions on the legs). It makes collateral veins (called spider veins) that try to take the blood back, but can't. Dr. Zamboni wrote a paper called "The Big Idea"-where he likens CCSVI to chronic venous disease of the legs.

B. Congestive Venous Myelopathy. This is a process where blockages in the veins along the spine cause the veins to leak damaging red blood cells and fluid into the tissue surrounding the spinal column. The result is demyelinating lesions on the spine. Paralysis, balance and bladder problems result.

4. Well…that’s all fine, but I’m on an immune modulating medication, and that will take care of this problem, right?

CCSVI has been found in MS patients, whether or not they are on immune modulating medication. A woman who underwent complete immune ablation with Revimmune still had CCSVI with 2 blocked jugulars. Dr. Zamboni tested over 500 MS patients, many who were on immune modulating medication, and they all still had CCSVI.

5. How can I find out if I have this?

There are a few different protocols, depending on where you live and what is available. In Italy, Dr. Zamboni begins with a Doppler ultrasound of the neck and brain, to see if the blood is refluxing. Then he performs a venography. This is where dye is injected into your veins to see the blood flow and possible stenosis. Jacobs Neurological Institute is following this protocol and also using MRV (magnetic resonance venography) Dr. Dake at Stanford was using MRV followed by endovascular venography to diagnose stenosis. Dr. Mark Haacke is using a combination of SWI-MRI technology and MRV, but he also recommends Doppler testing to confirm reflux. In Poland, Dr. Simka is using Doppler technology followed by venography. As you can see, right now the diagnostic protocol is dependent on your location.

6. My neurologist read the research and said it’s impossible, that I can’t have this. Besides, it's unproven.

That’s your neurologist’s opinion. Ask s/he what they believe causes the MS demyelination process. And ask for the facts, not speculation.

7. My neurologist says that MS is autoimmune, and he can prove it! I have oligoclonal bands in my spinal fluid, and that shows my immune system is going after my myelin.

Remind your neurologist that oligoclonal bands in spinal fluid also appear in people with neurovascular disease- like stroke and dementia. It's a well known fact that the immune system is activated to clean up after axonal death and tissue damage in the brain. CCSVI causes damage to the brain and axonal death, and the immune system becomes involved. But this doesn't prove that the immune system causes CCSVI or MS. Autoimmunity in MS is still a theory.

8. Yikes! If I have CCSVI, what can be done about it?

The good news is that Dr. Zamboni has been testing a procedure (the Liberation procedure) in his Italian patients for three years. He goes into the femoral vein endovascular (thru a small incision at the groin) and goes up into the blocked vein and opens it with a small balloon. He's done this to hundreds of patients, and many have greatly reduced symptoms and healing. He's also done this procedure on 18 MS patients who were in the hospital in the midst of bad relapses. The relapse symptoms stopped and were reversed in 4 hours to 4 days from having the balloon procedure...without steroids! Dr. Michael Dake at Stanford University was using stents (metal tubes) to keep the veins open if the ballooning did not keep the veins open. Treated patients have had reduction in fatigue, heat intolerance, spasms and some have had improved vision and mobility.

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Elena Ravalli was a seemingly healthy 37-year-old when she began to experience strange attacks of vertigo, numbness, temporary vision loss and crushing fatigue. They were classic signs of multiple sclerosis, a potentially debilitating neurological disease.
It was 1995 and her husband, Paolo Zamboni, a professor of medicine at the University of Ferrara in Italy, set out to help. He was determined to solve the mystery of MS – an illness that strikes people in the prime of their lives but whose causes are unknown and whose effective treatments are few.
What he learned in his medical detective work, scouring dusty old books and using ultra-modern imaging techniques could well turn what we know about MS on its head: Dr. Zamboni's research suggests that MS is not, as widely believed, an autoimmune condition, but a vascular disease.
More radical still, the experimental surgery he performed on his wife offers hope that MS, which afflicts 2.5 million people worldwide, can be cured and even largely prevented.
“I am confident that this could be a revolution for the research and diagnosis of multiple sclerosis,” Dr. Zamboni said in an interview.
Not everyone is so bullish: Skeptics warn the evidence is too scant and speculative to start rewriting medical textbooks. Even those intrigued by the theory caution that MS sufferers should not rush off to get the surgery – nicknamed the “liberation procedure” – until more research is done.
U.S. and Canadian researchers are trying to test Dr. Zamboni's premise.
For the Italian professor, however, the quest was both personal and professional and the results were stunning.
Fighting for his wife's health, Dr. Zamboni looked for answers in the medical literature. He found repeated references, dating back a century, to excess iron as a possible cause of MS. The heavy metal can cause inflammation and cell death, hallmarks of the disease. The vascular surgeon was intrigued – coincidentally, he had been researching how iron build-up damages blood vessels in the legs, and wondered if there could be a similar problem in the blood vessels of the brain.
Using ultrasound to examine the vessels leading in and out of the brain, Dr. Zamboni made a startling find: In more than 90 per cent of people with multiple sclerosis, including his spouse, the veins draining blood from the brain were malformed or blocked. In people without MS, they were not.
He hypothesized that iron was damaging the blood vessels and allowing the heavy metal, along with other unwelcome cells, to cross the crucial brain-blood barrier. (The barrier keeps blood and cerebrospinal fluid separate. In MS, immune cells cross the blood-brain barrier, where they destroy myelin, a crucial sheathing on nerves.)
More striking still was that, when Dr. Zamboni performed a simple operation to unclog veins and get blood flowing normally again, many of the symptoms of MS disappeared. The procedure is similar to angioplasty, in which a catheter is threaded into the groin and up into the arteries, where a balloon is inflated to clear the blockages. His wife, who had the surgery three years ago, has not had an attack since.
The researcher's theory is simple: that the underlying cause of MS is a condition he has dubbed “chronic cerebrospinal venous insufficiency.” If you tackle CCSVI by repairing the drainage problems from the brain, you can successfully treat, or better still prevent, the disease.
“If this is proven correct, it will be a very, very big discovery because we'll completely change the way we think about MS, and how we'll treat it,” said Bianca Weinstock-Guttman, an associate professor of neurology at the State University of New York at Buffalo.
The initial studies done in Italy were small but the outcomes were dramatic. In a group of 65 patients with relapsing-remitting MS (the most common form) who underwent surgery, the number of active lesions in the brain fell sharply, to 12 per cent from 50 per cent; in the two years after surgery, 73 per cent of patients had no symptoms.



“I am confident that this could be a revolution for the research and diagnosis of multiple sclerosis” Dr. Paolo Zamboni


Augusto Zeppi, a 40-year-old resident of the northern Italian city of Ferrara, was one of those patients. Diagnosed with MS nine years ago, he suffered severe attacks every four months that lasted weeks at a time – leaving him unable to use his arms and legs and with debilitating fatigue. “Everything I was dreaming for my future adult life, it was game over,” he said.
Scans showed that his two jugular veins were blocked, 60 and 80 per cent respectively. In 2007, he was one of the first to undergo the experimental surgery to unblock the veins. He had a second operation a year later, when one of his jugular veins was blocked anew.
After the procedures, Mr. Zeppi said he was reborn. “I don't remember what it's like to have MS,” he said. “It gave me a second life.”
Buffalo researchers are now recruiting 1,700 adults and children from the United States and Canada. They plan to test MS sufferers and non-sufferers alike and, using ultrasound and magnetic resonance imaging, do detailed analyses of blood flow in and out of the brain and examine iron deposits.
Another researcher, Mark Haacke, an adjunct professor at McMaster University in Hamilton, is urging patients to send him MRI scans of their heads and necks so he can probe the Zamboni theory further. Dr. Haacke is a world-renowned expert in imaging who has developed a method of measuring iron buildup in the brain.
“Patients need to speak up and say they want something like this investigated … to see if there's credence to the theory,” he said.
MS societies in Canada and the United States, however, have reacted far more cautiously to Dr. Zamboni's conclusion. “Many questions remain about how and when this phenomenon might play a role in nervous system damage seen in MS, and at the present time there is insufficient evidence to suggest that this phenomenon is the cause of MS,” said the Multiple Sclerosis Society of Canada.
The U.S. society goes further, discouraging patients from getting tested or seeking surgical treatment. Rather, it continues to promote drug treatments used to alleviate symptoms, which include corticosteroids, chemotherapy agents and pain medication.
Many people with multiple sclerosis, though, are impatient for results. Chatter about CCSVI is frequent in online MS support groups, and patients are scrambling to be part of the research, particularly when they hear the testimonials.
Kevin Lipp, a 49-year-old resident of Buffalo, was diagnosed with MS a decade ago and has suffered increasingly severe attacks, especially in the heat. (Heat sensitivity is a common symptom of MS.) His symptoms were so bad that he was unable to work and closed his ice-cream shop.
Mr. Lipp was tested and doctors discovered blockages in both his jugular and azygos veins. In January of this year, he traveled to Italy for surgery, which cleared five blockages, and he began to feel better almost immediately.
“I felt good. I felt totally normal. I felt like I did years ago,” he said. He has not had an attack since.
As part of the research project, Mr. Lipp's siblings have also been tested. His two sisters, both of whom have MS, have significant blockages and iron deposits, while his brother, who does not have MS, has neither iron buildup nor blocked arteries.
While it has long been known that there is a genetic component to multiple sclerosis, the new theory is that it is CCSVI that is hereditary – that people are born with malformed valves and strictures in the large veins of the neck and brain. These problems lead to poor blood drainage and even reversal of blood flow direction that can cause inflammation, iron buildup and the brain lesions characteristic of multiple sclerosis.
It is well-established that the symptoms of MS are caused by a breakdown of myelin, a fatty substance that coats nerve cells and plays a crucial role in transmitting messages to the central nervous system. When those messages are blurred, nerves malfunction, causing all manner of woes, including blurred eyesight, loss of sensation in the limbs and even paralysis.
However, it is unclear what triggers the breakdown of myelin. There are various theories, including exposure to a virus in childhood, vitamin D deficiency, hormones – and now, buildup of iron in the brain because of poor blood flow.
While he is convinced of the significance of his discovery, Dr. Zamboni recognizes that medicine is slow to accept new theories and even slower to act on them. Regardless, he can take satisfaction in knowing that the woman, who inspired the quest, and perhaps a dramatic breakthrough, has benefited tremendously.
Dr. Zamboni's wife, Elena, has undergone a battery of scans and neurological tests and her multiple sclerosis is, for all intents and purposes, gone.
“This is probably the best prize of the research,” he said.
André Picard is the public health reporter at The Globe and Mail. Avis Favaro is the medical correspondent at CTV News.
With reports from Elizabeth St. Philip, CTV News .


W5 DOCUMENTARY

Watch W5's documentary on the ground-breaking new treatment for multiple sclerosis, which includes the first time the “liberation” surgery was filmed.

It is available on the Web at www.W5.ctv.ca

MS IN CANADA

An estimated 55,000-75,000 Canadians have multiple sclerosis, and every day three more people in Canada are diagnosed with the disease. Canada has one of the highest rates of MS in the world. MS is the most common neurological disease affecting young adults in Canada.
• Women are more than three times as likely as men to develop MS.
• MS can cause loss of balance, heat sensitivity, impaired speech, extreme fatigue, double vision and paralysis. The disease is characterized by lesions on the brain, a result of the breakdown of myelin, the protective covering wrapped around the nerves of the central nervous system.
• The most common treatment for MS is corticosteroids. Steroids reduce inflammation at the site of new demyelization, lessening symptoms.
• MS was first identified and described by French neurologist Jean-Martin Charcot in 1868.
• MS is widely believed to be an autoimmune disorder, but the cause or causes are unknown. There are a number of theories about what might trigger the disease, including exposure to a virus in childhood; exposure to tobacco smoke; lack of the female sex hormone prolactin, which plays a role in the development of myelin; and vitamin D deficiency. Vitamin D may play a role in MS because it helps to construct the interior layer of blood vessels.
• Despite the long-held assumption that MS is an autoimmune disorder, new research suggests it is actually a vascular disease triggered by a buildup of iron in the brain due to problems in blood flow.
Source: MS Society of Canada
Interview with Canadian Doctor (Dr. Haacke)

Here is a radio interview with Dr. Haacke regarding trials and research.

Website Link:
http://www.cfra.com/chum_audi/Mark_Haacke_Jan05.mp3

Dr. Paolo Zamboni

Info:

Name: Dr. Paolo Zamboni
Tlf: +39 532 236542
Fax: +39 532 237443
Email (1): paolo.zamboni@unife.it
Email (2): zmp@unife.it

Address: CENTRO INTERDIPARTIMENTALE DI RICERCA E SERVIZI MALATTIE VASCOLARI - VASCULAR DISEASES CENTER

Cod. 300481 – B
C/o Dipartimento di scienze chirurgiche, anestesiologiche e radiologiche Via Giovecca N. 203

Website: www.fondazionehilarescere.org
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Dr. Jacek Kostecki

Info:

Name: Dr. Jacek Kostecki
Email: kosteckj@op.pl
Address: Tychy-Poland

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North America:

USA:

Dr. Michael Dake

Info:

Chief of Interventional Radiology
Stanford University School of Medicine
300 Pasteur Dr.
Stanford, CA 94305-5642
Website: http://biodesign.stanford.edu/bdn/people/mdake.jsp
Phone: 650-725-5202

* For more information about the progress of his patients see: ThisIsMS.com – Forum: Standford Doctor
* Due to various issues, treatment is not currently being offered at this location.
* Stanford University will be conducting a study on CCSVI and is accepting applicants, but is not making actual appointments.

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Dr. Mehta

Info:

The Vascular Group, Albnay, NY

* Opening up the doors some time in March/April 2010
* Taking names for clinical trials
* Vascular Group, Albany, NY

__________________________________________________________________________


Dr Salvatore J. A. Sclafani

Info:

Chief of Radiology
Kings County Hospitial, Brooklyn, New York
Professor and Chairman of Radiology @ SUNY Downstat medical School
Email: ccsviliberation@gmail.com
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Canada:

Info :

Only screening available
Westmount Square Medical Imaging

Montreal, QC
Phone: (514)939-9764 x2714
Website: http://www.radiologymontreal.com

* Information about screening found on their front page
* Requires an requisition from your doctor
* Affiliate with McGill University


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False Creek Surgical Centre

Vancouver, BC

Info:

* Are willing to perform testing for CCSVI for the price of $2300.
* Are not willing/capable of performing the actual surgery
* False Creek Surgical Centre Website.
* Have been trained by Dr Simka on the proper testing method.
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Europe:

Italy:

Professor Paolo Zamboni

Info:

Università degli Studi di Ferrara
Corso della Giovecca, 203
Ferrara, Italy 44100
Phone: 0532 236304

* It has apparently become very difficult to get the treatment done here due in part I believe to it being a research facility

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Dr. Roberto Bergamaschi Neurological Institute

Info:

Director of the MS Center of Pavia
Via Palestro, 3
Pavia, Italy 27100
Email: roberto.bergamaschi@mondino.it
Phone: 382 380206

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Poland:

Dr. Marian Simka

Info:

Out-patient Department of Angiology
Private Healthcare Institution SANA,
ul. Wodzislawska 78;
Pszczyna, Poland 43-200
Phone: 48 322120498
Email: mariansimka@poczta.onet.pl

* Can assist people in English
* Being one of the first and best known location to have the procedure performed there is a very long waiting list (ie till mid 2011)
* Cost ~6900 euro
* For more info see: ThisIsMS.com – Forum: Dr Simka
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Dr. Jacek Kostecki

Info:

Email: kosteckj@op.pl

* Apparently a protege of Dr Simka
* Recently began offering the same treatment as Dr Simka
__________________________________________________________________________

Tomasz Ludyga,

Info:

EuroMedic
Rolna 18
Katowice, Poland 40-555
Email: t.ludyga@poczta.fm
Phone: 32 354 05 87

* Can work with patients in English
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Bulgaria:

Prof. Lachezar Grozdinski, MD, PhD

Info:


Specialist in angiology
National Cardiology Hospital,
Clinic of vascular surgery and angiology
Tokuda hospital, Sofia, Bulgaria
Sofia, Bulgaria,
Phone: 00359 2 997 89 18
Website: http://www.tokudabolnica.bg/en
Email: grozdinski@mail.bg

* Has announced that he and his team will start accepting foreign patients starting April, 2010
* For more information see his response at:
Letter from Prof Grozdinski
* For more info: http://www.thisisms.com/ftopict-9625-india.html
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Slovenia

Martin Sinigoj

Info:


Medicinski center Sinigoj Nova Gorica, Slovenia
Ul. Vinka Vodopivca 21, Kromberk
Nova Gorica, Slovenia 5000

http://www.mc-sinigoj.si/
Web page: http://www.mc-sinigoj.si
Phone: +386 5 330 2658

* See information page (non-English)
* TCCS TCD CCSVI – Head and neck vein ultrasound examination – Vein azygos ultrasound examination
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UK

Dr. Anton Collins

Info:


Royal Victoria Hospital in Belfast, North Ireland

* No longer performing the procedure.
* Do not call
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Germany

Univ. Prof. Dr. med. Thomas J. Vogl

Info:


Goethe university of Frankfurt
Email: t.vogl@em.uni-frankfurt.de
Phone: +49(069) 6301-7277

__________________________________________________________________________

Dr. Juergen Reichenbach

Info:

Inst. fuer Diagnostische und Interventionelle Radiologie, Universitatsklinikum
philosophenweg 3
Jena, Germany 07743
Website: http://www.uniklinikum-jena.de/Willkommen.html
Email: Juergen.Reichenbach@med.uni-jena.de

* Apparently Jena He is working together with Prof. M. Haacke (case 1) and he is a big name in the line of business.
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France:

Dr Claude Franceschi

Info:

Head of Vascular Laboratories, Saint Joseph Hospital, Paris

* Known to be an excellent surgeon, may be performing treatments
* There apparently maybe another doctor performing this surgery in Paris, France, I haven’t yet found out too much
* For more info see: ThisIsMS.com – Forum: France Doctor
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Oceania-Australia

Julie Greg

Info:

Melbourne Radiology Clinic
6/100 Victoria Pde, East Melbourne
Melbourne, Australia 3002
Phone: (03) 9667 1667

* Clinic is apprently setup to perform limited Doppler Ultrasound Testing
* Intra-crannial testing not yet available
__________________________________________________________________________

Asia

India

Dr. Mohamed Rehan Sayeed

Info:

Apollo Hospital, Bangalore & Chennai
Phone: 00919900236825
Website: http://www.heartcareforyou.in/
Hospital Website: http://www.apollohospitals.com

__________________________________________________________________________

Dr. Anil Karapurkar

Info:

Mumbai, India
Hospital Website: http://www.breachcandyhospital.org/
Team website: http://www.peopleagainstbrainattack.com

* Approximate cost $6000 USD
* For more information: http://www.thisisms.com/ftopict-10493-india.html
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For MS Views and News check out the following website as well:

Link:
http://www.msviewsandnews.org

Here is the blog of my good friend "Phoebe". Me & here were liberated the same day.So for us,It is exciting to exchange our progress about the liberation. You guys can also follow her on her blog.

Link :
http://myccsvijourney.weebly.com/index.html

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This is a friend of mine named "Kenneth".He had the Stem-Cell treatment.If any of you guys are interested to read more about it. you can always visit his blog and use Google translator to translate it.

Link :
http://www.stamceller-til-kenneth.dk/links.html