Setting the record straight

I want to simply state some facts for my readers.  Because if I don't, journalists and bloggers will continue to create a narrative of the kooky singing wife, who found some crazy researcher online and led the world on a goose chase.  And that's not true.  And it's really hurtful.

Some factual, documented history:

1.  I believed there was a vascular connection to my husband's MS diagnosis from day one.  That would be March 23, 2007, the day we got his serum results from the doctor and I saw so many numbers that were way out of normal range.   Coincidently, my birthday.

2.  Using Jeff's serum results as a point of reference, I went to the library and took out every single book they had on MS, including McAlpine's history of Multiple Sclerosis--which had a section on the long history of the vascular connection.  This is where I first read about Dr. Tracy Putnam.  link The pile of textbooks also included Dr. Swank's research.  Dr. Swank wrote about the connection of MS to the blood.  He published over 100 research papers on MS.  He wrote about capillary fragility, petechiae and hypercoagulation in his MS patients--all of this research rang a lot of bells for me.  link

3.  I was on a forum called "This is MS" in September 2007.  I wrote about Jeff's serum results, hypercoagulation, and postulated on a bunch of research with other people with MS and caretakers.  It was a great community, and we shared papers, programs and MS research.

4.  Using pubmed and my local library, I eventually came to the intersection between the vascular and immune system I had been searching for---the endothelium.  Using published and peer-reviewed science, I created The Endothelial Health Program for Jeff and shared it on This is MS in the summer of 2008.   I saw a connection between many of his vascular issues (petechiae, high Crp levels, hypercoagulation, high liver enzymes), endothelial dysfunction, and his MS diagnosis.  We found that by changing his diet to a Swank program, increasing his Vitamin D levels, including cardiovascular exercise, thinning his blood with proleolytic enzymes, getting him out in sunshine, reducing work stress, improving his sleep---he was doing much better, he did not have a relapse and his serum results normalized. http://ccsvi.org/index.php/helping-myself/endothelial-health

5.  I wrote to endothelial researchers at USC and Stanford, asking if they had any knowledge of studies or published research on the function of the endothelium in MS.  Both of them e-mailed me back.   I began a correspondence with the researcher at Stanford, because he was the most interested in this connection.  Here is part of his reply.  I have all of the e-mails, if anyone aside from me ever truly wants to get this story correct.

"I enjoyed reading your treatise. 
I quite like the hypothesis that MS is secondary to a derangement of the endothelium of the cerebrovasculature, that results in inflammation and local damage. 
I am also in agreement with your contention that a functioning endothelium is a major key to health. 
Furthermore, I agree that diet and exercise are critical for endothelial health." 

6.  It would be three months later I would send more research to this doctor.  One of the papers was Dr. Zamboni's new publication on CCSVI, which had been shared with me, the "vascular hypothesis gal" on This Is MS.   He was fascinated by the research, and suggested further testing for Jeff.  Here's part of that e-mail.

  "You could get more evidence for cerebral venous abnormalities (I would be particularly concerned about venous stenoses) by MR imaging, with attention to the cerebral veins. "

7.  We would eventually bring Jeff up to Stanford for TESTING to see if he had any venous abnormalities.  It took a few months to schedule, as he was busy composing and we needed to travel from LA to the Bay Area.   He was tested in April, 2009.   My mistake was that I wrote about all of this online, on the This is MS forum.  I should not have done this.  It is my one, deep regret.  But it is also why I continue to blog and write.  Because I feel hugely responsible for what would later happen.

8.   Jeff had serious venous abnormalities, documented on MRV.  link  He had a 99% stenosis in his left jugular vein and an 80% closure of his right.  The doctor we were consulting with felt this was a serious issue for his brain perfusion, and suggested we think about potential treatment.  We went home.

9.  After consulting with other physicians,  Jeff scheduled his venoplasty treatment for May 2009.  He went back up to Stanford and was treated for his venous abnormalities.  He had a profound response on the table---he felt as though the "lights came on" after a stent was opened on his left side.   He came home and slept soundly, without spasms, for the first time in over a year.  He was dreaming again.  He also had a terrible headache the first day, and would develop severe shoulder pain from having his accessory nerve pinched by stents.  These side effects from the treatment would pass, but it was scary.  Again, I wrote about it online.

10.  People read what I wrote, called Stanford, were treated there or tried to get treated elsewhere.  The press picked it up, and the rest is pretty well documented.  What is never reported correctly is that I didn't force an IR to treat Jeff.   We asked him to TEST Jeff for venous abnormalities.  When we saw how bad they were, the IR suggested treatment,  and we eventually agreed.

I never called venoplasty a cure for MS.  I also never meant for people to get hurt, or travel for medical tourism, spend thousands of dollars (as Jeff was covered by our insurance)  or most terribly, to die from complications.  I certainly didn't want to be labeled the crazed wife who forced an IR to treat her husband.  I always said this was only part of living a vascularly healthy life, to encourage healing and strengthen the heart-brain connection.  I never used the word cure.   I started the Facebook group because I was really concerned with how this research was being discussed as a cure.    link  I was also shocked with how vehemently the MS specialists were denying any link to the vasculature.  I wanted people to know this was only a treatment, and it might not be right for them. Which is partially why I stayed online.   That, and a huge amount of pride, I'm sure.  Ego is never a good thing, and I know it complicated this issue.

But in all honesty, all I wanted were answers for the love of my life.  And we hung around because we had hoped this could be helpful to others.  But to be continually portrayed as cure seekers, zealots and wingnuts by the NY Times, the Wall Street Journal, and other publications (which will live online ad infinitum) and to have our names linked to false and incomplete reporting is simply too much.

So, there it is.

Going for a walk with my love, and our 17 yr. old dog, Angel (another medical anomaly)
Have a nice day,

Joan

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.

Enjoy,

Joan

http://www.ilgiornale.it/interni/un_medico_malato_e_riuscito_curare_sclerosi_multipla/11-12-2011/articolo-id=561619-page=0-comments=1

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. " 

Searching for a cure

March 31, 2011 at 7:49pm

Let's talk about the word cure.  This is a very, very powerful word.  We use it when we talk about solving the worst of our mystery diseases, like cancer, diabetes, Alzheimers and multiple sclerosis.  But the truth is, doctors are now admitting there may not be an actual cure for these diseases.  They are beginning to write and speak out and say that prevention and lifestyle changes early in life may stop these diseases from happening later.   Here's a highly recommended paper on "the best cure for disease"

link

Let me explain further.

We understand that there is no cure for a stroke, right?  Someone develops a blood clot over time.  Maybe they smoked, maybe they didn't get enough exercise and liked to eat fatty foods, or maybe it was just a predisposition they inherited. One day WHAM!  The clot breaks off and heads up the carotid artery and goes into the brain.  The clot blocks blood flow and brain tissue doesn't get oxygen and it dies.  The stroke patient is given clot busting medicine, blood flow is restored, but there's been damage.

Well, it looks like the damage from CCSVI could be somewhat like a stroke.  It may be affected by epigenetics and environment. Lifestyle matters. It is a chronic process due to a venous malformation which creates slowed cerebral blood flow and possible venous hypertension.   

My husband lost his peripheral vision as a kid due to a swollen optic discs--but it wasn't until 30 years later he got an MS diagnosis.  We now know he had venous hypertension his whole life.  That's a long time!   Eventually the brain is not able to reroute around the damaged parts and there is MS progression.  This leads to an MRI, a lumbar puncture, an eventual diagnosis of MS.    But the part of the brain or spine or optic nerve that has been damaged is not going to come back completely, even if we get blood flow going correctly.  Dead axons are dead.  My husband won't get his vision back.  

There is hope through rehabilitation and recovery.  A stroke victim works hard to learn how to walk again, to speak normally, to take care of themselves.  Perhaps, via plasticity,  the brain can reroute around the damage.  But there is no "cure" for a stroke.  A stroke victim doesn't go back to the way he was before the stroke.  And that also happens in MS.

We need to stop speaking about venoplasty to relieve CCSVI as a cure, or a return to complete health.   It just gives false hope to pwMS, and leads to high expectations and later disappointment.  The truth is, the brain and spine may be damaged due to years of insufficient blood flow.  That doesn't mean there is no hope.  There may be symptom relief for many.  Often the relief comes in a lifting of fatigue or heat intolerance, a reduction in spasms, a return of better vision, clearer thinking, and yes, even return of mobility in some.  This allows for physical therapy, brain plasticity and rerouting,  retraining the body, adopting a new, healthier lifestyle and hopefully, an end to disease progression.  Just like a stroke patient--it is all about rehabilitation and a new life.

To make venoplasty the "cure" for MS is to expect too much.  Dr. Zamboni says so himself--this is not a cure.   As a community, we have to be honest with those who are looking at this treatment.  We need to be honest with each other.  And we need to realize that venoplasty is not a one time magical answer to ending MS.  It is a commitment to an ongoing lifestyle, a relationship with a vascular doctor, hopefully covered by insurance,  and a new life.  That may be hard to read and harder to comprehend on a gut level, but it has to be said; because too many are mortgaging the house, using their IRAs, going into debt--to buy a "lottery ticket" for a cure.  And they're getting hurt.

Don't get me wrong, I believe in miracles.  I've seen them in my own life and in others' lives, and I know God is bigger than any one of us--but I also believe in honesty and full disclosure.  Please understand that no one, including the doctors, is calling this a cure.  

Joan