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Tuesday, October 26, 2010 1:21 AM | Ken Torbert Volg link

ALBANY -- Nearly 300 patients with multiple sclerosis sought out an experimental procedure at Albany Medical Center this year. Denise Manley was among them.


Manley, 48, of Pittsfield, Mass., said her MS was so bad that, in her
desperation, she was considering assisted suicide. Instead, she

underwent a new treatment that involved widening the veins in her neck

and chest.


"I always said I felt like my circulation was being cut off at the neck," said Manley, who was diagnosed with MS in 2000
after years of illness.


She walked with a cane and suffered from dizziness, double vision, fatigue and bladder dysfunction. Her pain
level was so high that painkillers had little effect, she said.


At Albany Med, Dr. Gary Siskin snaked a catheter from Manley's groin up to the blood vessels of her
neck and chest. The vessels allow blood to drain from the brain and

spine, and recent research has found those vessels are often narrowed or

blocked in MS patients in a condition called chronic cerebrospinal

venous insufficiency.


Manley's left jugular vein was completely collapsed. Siskin, chair of the radiology department and head of
interventional radiology, reopened it with stents.


Manley said she walked out of the hospital the same day -- without her cane. She
still has sensation of pins and needles in her hands, legs and feet, but

the pain and fatigue has eased and she doesn't wake up crying in pain

any more. "This is the first thing in the past 20 years that has

actually helped me," Manley said.


MS is an autoimmune disease in which the body's own defense system eats away at the protective lining
of nerves. It is a progressively degenerative disease with no known

cause or cure.


From her home computer, Manley has become an evangelist for the procedure, called an angioplasty. Working from a list
of 45 doctors who perform it, she helps connect MS patients with them.

The procedure costs about $6,000 to $15,000.


"It's almost an underground railroad right now, " she said. "It's not widely accepted. Neurology is so against it."


Despite the growing number of patients that say it works, there is no
scientific evidence that proves the effectiveness of treating CCSVI, or

even whether CCVSI is associated with MS.


In 2009, a vascular physician in Italy named Dr. Paolo Zamboni reported that 43 of 65 MS patients he studied had signs of narrowed
veins. It was a breakthrough moment for study of the disease. Zamboni

also performed balloon angioplasty in the patients' veins to widen the

constricted vessels; many reported feeling better, although half the

patients' veins went back to having restricted blood flow.


A follow-up study conducted at the University of Buffalo Medical Center delivered conflicting results. Buffalo researchers examined 499
volunteers, 289 of whom had MS. Preliminary numbers from the study show

that 56 percent of the MS patients had CCSVI and 23 percent of the

healthy people also had the condition.


Meanwhile, Zamboni's work was circulating on the Internet. Siskin said patients started calling
his practice to see if doctors there performed the procedure. The

physicians were skilled at breaking up blockages in the arteries of the

heart, so it wasn't difficult to learn the pathways to reach blockages

in veins. "The patients did really well," Siskin said.


CCSVI critics in the neurology community say that MS is an autoimmune problem,
not vascular, and argue the vein abnormalities seen in MS patients are

found in many healthy people with no symptoms.


The National MS Society is spending $2.4 million on seven studies to figure out the mechanics of CCSVI and determine if there is a link to MS.


"It's really important to address new ideas and find out if they are going to fulfill their early promise," said Nicholas LaRocca, the society's vice president of health care delivery and policy
research, "rather than let people wait and hope and not really know."


In Albany, Siskin's study leapfrogs the research around the link between
MS and the narrowed veins and zeroes in on the treatment of the

damaged veins.


Siskin will enroll 130 patients in a double-blind, controlled study. All of the patients will undergo a venogram, in which a
tube is placed into the veins to assess the width of the vessels. Half

the patients will also get a balloon angioplasty to widen any restricted

vessels. Since all patients will be sedated and have a puncture in

their groin, the patients will not know whether they received the

angioplasty, and the neurologist who assesses the patients will not know

which treatment the patient received -- hence the "double-blind."


The patients will pay for the venogram, but Albany Med and Community Care Physicians will pay for the balloon angioplasty. Though the risks of the procedure
are low, there are possible complications such as infections at the

site of the groin wound, abnormal hearth rhythm, a puncture in a vessel,

blood clots and veins that become narrowed again. "It's not something

that someone would undertake lightly," LaRocca said.


Siskin's study will last about 18 months.


Reach Crowley at 454-5348 or ccrowley@timesunion.com.




http://www.timesunion.com/default/article/MS-treatment-put-to-test-in-Albany-721816.php