Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of the endothelium and heart-brain connection. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the auto-immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Sunday, December 11, 2011

Dr. Zamboni--the personal interview

December 11, 2011 at 9:41am

A wonderful interview with Dr. Zamboni in Il Giornale (the daily paper in Milano)
This piece answers many of our questions:  what disease does Dr. Zamboni have?  How is his wife doing?  How are the first group of patients doing?  What is going on with his CCSVI study?

Translated from Italian by google translate and me, a wonderful, indepth and personal interview.

By Stefano Lorinzetto-
A Medical Patient is able to treat Multiple Sclerosis

Progressing slowly in the hallway of Hospital Sant'Anna, walking on feet ballasted by orthopedic boots. He reaches towards me with both hands, unable to close them, but still able to transmit the warmth of empathy. Professor Paolo Zamboni, director of vascular diseases and professor of clinical methodology of the University of Ferrara, has a medical illness. He has been attacked - 'you do not know how, you do not know why '- by a very rare disease, probably from the immune system, which weakens the nerves and muscles. It's called MMN, multifocal motor neuropathy.  So far there are only a thousand cases between Europe and the United States. It is a mild form of ALS, amyotrophic lateral sclerosis.

But it's against another disease, MS, which Professor Zamboni has fought and won the hardest battle of his life. Wanting at all costs to heal his wife Elena, who had been hit, he did the logical thing for a scientist: "I tried to understand." The end point was the discovery of CCSVI, an acronym that made him famous in the world, so much so that now his surgery is booked until Easter, the switchboard of the study was replaced by a recorded voice that invites you to call at better times, the computer department of the hospital has accumulated 24,000 emails asking for medical examinations from those who can not cope, a Facebook group titled "Nobel Prize for Dr. Paolo Zamboni "has already gathered 7,957 supporters who would like to apply for the prize for medicine awarded by the Karolinska Institutet and Marco Marozzi has devoted a fascinating book of 334 pages, Brave Dreams (Knopf), which tells precisely" the struggle of a Italian doctor over multiple sclerosis."

CCSVI stands for chronic cerebrospinal venous insufficiency.  This is a major vascular disease that nobody before him had realized and that, as the Zamboni could ascertain, is present in 70 percent of patients with multiple sclerosis.  CCSVI is also found in 10 percent of people who do not have MS. It therefore remains to investigate everything from the role it plays in disease and other neurological degenerative diseases.

Professor Zamboni has overseen CCSVI surgery in collaboration with Dr. Fabrizio Salvi, MS expert and neurologist at Bellaria Hospital in Bologna. Dr. Salvi is so important to their research that when Salvi, big fan of motorcycles, ordered a Ducati Monster 900, the mechanics went to Zamboni and asked him: "Professor, but should we deliver it? And if he kills himself in an accident? With all the good that you have to do ...». The professor replied: "Right. Give him half capacity. "

The CCSVI procedure, under local anesthesia, takes 45 minutes to an hour and a half. It serves to unblock clogged veins. As part of a pilot study 65 MS patients were treated: 35 in the initial stage (the so-called relapsing-remitting form, with symptoms that come and go) and 30 had already needed to use a wheelchair. In 44 cases the operation is successful, the first time in 26 and 14 needed a second operation and 4 of a third. For 23 of the 35 patients in the first group was complete remission, only an MRI can detect the scars of MS.

Actually the most amazing results were achieved by Professor Zamboni on his wife, of whom he prefers, however, never to speak: "For ethical reasons I would not put her in the trial. So it's a case to be considered devoid of any scientific value. " So be it. The fact is that Elena feels good enough to make this point in the gym. This woman showed the first signs of the dreaded disease in December 1987, shortly after she gave birth to their daughter Matilda, who is now the fifth year of medical school.  Elena's procedure was done in May 2007 by Dr. Roberto Galeotti, the interventional radiologist who worked since 1998 with his childhood friend Paulo,  "Up until a moment before entering the operating room with Roberto, my mother-in-law went on to ask:" But are you sure of what you are doing? '" Since then Elena has had no more MS attacks. 

What is known about MS?
Not much, except that it is the most common degenerative disease in the age group 20-40 years. In the world you diagnose a case of MS every four hours. Those affected are 3 million, just over 61,000 in Italy."

When did he realize that his wife had MS? 
"We were just married. I had won a place as a researcher at the Institute of surgical pathology at the University of Sassari. Elena had followed me to Sardinia. One morning she phoned me: "It's as if I had ants on my face, I can not move the muscles of the face and I hear little from one ear." A few days later the strange noise ceased. There and then I gave it no importance. Five years later appeared the first episode, the one that occurs in half of MS patients: a black disc in the visual field. It is the immune system that attacks the optic nerve as if it were an enemy to destroy. The attack lasted for three weeks. Then another year and a half of peace. After which 'the precipice: she could not walk anymore, was not in balance. I felt inadequate as a husband and as a doctor, I was not able to answer her questions."

Reaction to the study. 
"Yes, I threw myself on the scientific literature of the treatment of MS. But I had trouble understanding. My colleagues see it as an autoimmune disease, an elegant formula by which we justify our ignorance as doctors. Juvenile diabetes, rheumatoid arthritis, nephritis, Crohn's disease ... We have to hurry, saying that all the wrong answers of the immune system. Including the MMN which I suffer. " 

And then? 
"I decided to start from scratch, studying pathological anatomy, from the microscope. And there I noticed something particularly interesting: at the center of each MS lesion passes a vein. Imagine a series: the vein is the thread, the plaques are the pearls. Without two decades of study I would never have come to discover the chronic cerebrospinal venous insufficiency. For the first time research on multiple sclerosis moved out of the skull, into the vessels of the neck and chest."

What does CCSVI do? 
"Three things. You can not achieve good oxygenation of brain tissue, and this can damage cells and nerves. CCSVI creates microbleeds and iron deposits in the veins of the brain, resulting in the production of free radicals. Increases inflammation and recall of immune cells. All three things considerably worsen the symptoms of MS. " 

Once taking care of CCSVI, what happens in people with multiple sclerosis? 
"MS has ten degrees of severity, ranging from normal to an apparent vegetative state. I can not say to those who are for years in a wheelchair, but surely removing CCSVI the symptom which disappears most, which is chronic fatigue, a fatigue so exhausting before that one cannot take on rehabilitation activities. Moreover, angioplasty strengthens the control of the sphincter. For a disabled person not to pee on himself may be more important than standing. He can return to the interest in life and social relations. " 

How is the operation? 
"Without a scalpel. It is an endovascular intervention. We introduce a thin catheter from the groin into the femoral vein and it sails under radiological guidance until the azygos, a vase-shaped walking stick vein, which is attached to the spine and behind the heart, which carries blood from from the spinal cord. The balloon catheter is inflated to remove the obstruction. The same is done on the two jugular veins. It is in these three locations that some thin membranes, possibly due to birth defects, impede the flow of blood. Unfortunately, in half the cases the membranes tend to reposition themselves after about eight months and must be done again. In 30 subjects out of 100 this second editing is final.

Why not remove the membrane once and for all? 
"It would need a special surgical instrument, but these are not being built because 'no manufacturer sets up an assembly line in the absence of a randomized trial." 
That is to say? 
"We need a double-blind tests, ie a clinical trial in which  'examiners ' and the patients do not know which of the latter were subjected to treatment. One is about to begin. It will be a study involving 700 patients--not for profit-- in fifteen Italian hospitals."

I know someone who has also beem nominated to participate is Nicoletta Mantovani, the widow of Luciano Pavarotti, She was diagnosed with MS in Los Angeles, six months after becoming the companion of the famous tenor. 
"She would have been entitled to the last place in the study that I conducted on 65 patients, but she did not want to give the impression of being special. She was the godmother of AISM, the Italian Multiple Sclerosis Association. And then she came out in protest against their attitude towards the closing of our research."

But Dr. Mark Freedman, director of the Multiple Sclerosis Research Unit, Ottawa Hospital, said: "I hear stories every day of complications from treatment abroad." And his colleague David Spence called robbery, robbery, to spend money and subject them to the care of the sick Zamboni: "It is the stuff of charlatans, quacks of medicine. No one is yet able to say if it works. " 

"If I had discovered something stupid, would they be opposed to this so much, do you think? Canada is the country in the world where MS is most striking, there is no family that does not have a relative or friend affected by multiple sclerosis. And Freedman is quoted as the neurologist in the fight against MS in Canada. I think I told you everything."

As stated in the book Bold Dreams, "there are those who live with multiple sclerosis and those living off of multiple sclerosis." 

"It is a disease modified with about 40 drugs manufactured by a dozen corporations, but in the last stages of the disease, the drugs are useless. A patient in Italy costs the NHS by 22,000 to 25,000 per year. An example: for the 500 MS treated with Vicenza Hospital San Bortolo will spend 11 million euros. Throw in the business connected with Disabilities: wheelchairs, prostheses, support aids, diapers."

And of his own disability, when he caught the first clue? 

"In the early nineties. After surgery I felt tired hands, heavy. Before that could operate for 12 hours straight without any problems. Then in 1994 a foot began to falter. For some years I used only the right hand. In 1998 I had to lay down the scalpel for good. Now I teach doctors who attend the school of specialization in general surgery. " 

What other activities, are not open to him? 
"The MMN leads to a progressive motor disability. Every gesture requires more patience, more fatigue. I learned to eat with your left hand and cut me from other steak in the dish. It takes me at least half an hour to dress, rather than 'two minutes. I can not best this tie. " (Laughs).

When I meet people like you, I always think back to a phrase. It is from a nineteenth-century painter, Ugo Bernasconi, "Better the doctor who heals us also makes us see his wound." 

"It's true. My patients, while seeing me sick, want to be sure that I am in the operating room too. Without hands, but with the head. I know that a more serious problem infuses much of their strength. " 

When did he explain to his daughter that her parents had been affected by serious diseases? 
"At age 15, she was with us at a medical conference in Poland. During the train trip I told her that mom and dad were suffering from diseases and what could be the outcome. In Warsaw, we had a night of forbidden things: cigarettes, beer and dancing on a table in a tavern. It was the last time I danced. " 

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