Annette Funicello’s Desperate Last-Ditch MS Treatment

Tuesday, 09 Apr 2013 10:45 AM

By Nick Tate

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Annette Funicello, who died from complications of multiple sclerosis this week, turned to a controversial alternative treatment near the end of her life in which the veins of her neck were widened to improve blood flow.
 
Known as CCSVI therapy, the treatment aims to address a condition known as chronic cerebrospinal venous insufficiency — discovered by Italian vascular surgeon Paulo Zamboni, M.D., of the University of Ferrara — that prevents blood from draining from the brain and spinal cord of patients who have it. Dr. Zamboni and other CCSVI therapy advocates believe MS patients have narrowed or blocked jugular and azygous veins and that blood flows back into their brains, triggering an immune response and leading to MS’s debilitating symptoms.
 
CCSVI treatment involves opening the blocked veins with balloon angioplasty or stents. Dr. Zamboni has claimed about half of his MS patients report a reduction in symptoms. Funicello reportedly underwent the therapy in 2011 and her husband, Glen Holt, said she did experience some improvements.

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“When they started the procedure she looked more alive. She was brighter than she was before,” Holt told the Canadian television network CTV, noting he was in the procedure room when she underwent the therapy. “I saw in front of my eyes things changed — the glow of her face came in.”
 
But Dr. Zamboni’s theory contradicts conventional belief that MS is an autoimmune disease. Neurologists have criticized Dr. Zamboni’s claims and other researchers who have conducted independent studies on CCSVI reported inconclusive results.  Last May, the U.S. Food and Drug Administration issued a warning about the treatment, noting it is not FDA approved and suggesting it may pose a risk to patients.
 
“Because there is no reliable evidence from controlled clinical trials that this procedure is effective in treating MS, FDA encourages rigorously-conducted, properly-targeted research to evaluate the relationship between CCSVI and MS,” said William Maisel, M.D., chief scientist and deputy director for science in the FDA’s Center for Devices and Radiological Health. “Patients are encouraged to discuss the potential risks and benefits of this procedure with a neurologist or other physician who is familiar with MS and CCSVI, including the CCSVI procedures and their outcomes.”
 
Funicello’s personal physician, Jeffrey Salberg, M.D., said he did not see any significant changes in the actress, but acknowledged the possibility that CCSVI may be helpful.
The National Multiple Sclerosis Society has taken a measured view of CCSVI.

"The jury is still out on...the CCSVI hypothesis in MS and the proposal to use venoplasty to treat it,"
said Nicholas LaRocca, health care delivery and policy research specialist with the society. 

An MS Society-funded study conducted by researchers at the University of Texas Health Science Center at Houston concluded last year that CCSVI is not a likely cause of the condition, after tracking 276 patients.
 
“The team … findings do not support the idea that CCSVI is causally related to MS,” the researchers reported in the Annals of Neurology.
 
But research is continuing, with the MS Society funding another half-dozen other studies to try to get to the bottom of CCSVI’s potential connection to MS. CCSVI therapy has drawn some big-name celebrity backers, including talk show host Montel Williams, who has MS.

LaRocca noted other advacements in MS care have led to improvements in the quality of life of many patients in recent years, and additional progress is being made.

"I cannot really comment on Annette’s MS," he said. "However, I can say that improvements in the treatment of MS have reduced the likelihood that people with MS will experience a shortened life span. 

"There are many promising things going on.  One new therapy was approved only recently by the FDA and we are awaiting word on another.  Many others are in the pipeline, bringing promise of more options for people with MS.  Rehabilitation to help restore function is making significant progress, including results from research into the benefits of exercise.  Research is probing many other options including the possibility that vitamin D may be helpful to slow the progression of MS and/or reduce the risk of contracting the disease."
 
Funicello’s death seems likely to draw wider attention to CCSVI and research into the still-unknown causes of MS — a progressive, immune disorder of the brain and spinal cord in which the lining around nerve fibers, and often the nerve fibers themselves, are injured.

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Funicello, who died Monday at the age of 70, was diagnosed with condition in 1987, after she began experiencing the hallmark mobility problems MS causes. Since then, she has been a vocal advocate for MS patients and research into causes and treatments for the condition.
 
She founded the popular Annette Funicello Collectible Bear Company, which created unique bears and raised money for the National MS Society. Her life story was further commemorated in the  Lifetime Television made-for TV movie, A Dream is a Wish Your Heart Makes: The Annette Funicello Story, based on her autobiography. The film concluded with a National MS Society PSA.
 
In 2002, Funicello was named ambassador for the Society's Walk MS event, but her public appearances became fewer in recent years.
 
“Our condolences and heart felt wishes go out to Annette’s family,” said Cyndi Zagieboylo, president and CEO of the National MS Society.  “The love we all had for her since she debuted as a Disney Mouseketeer has put a very personal face on MS for millions of Americans and helped rally them to the MS movement to end this disease forever.”

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