Bloomington woman to undergo controversial MS surgery

Cynthia Ashworth came to Bloomington from Colorado to receive a doctoral degree in medieval studies at IU. She taught entry-level English courses and had dreams of going back out West to teach once she completed her doctorate.

She woke up one morning to discover that she could not get out of bed to go to her choir rehearsal.

Sixteen years later, she is confined to a recliner at her home on Bloomington’s south side. 

Ashworth suffers from multiple sclerosis, a chronic autoimmune disease that often attacks the central nervous system, according to the National Multiple Sclerosis Society. Symptoms can range from numbness in the limbs to paralysis or loss of vision.

“It’s a hard life to live,” Ashworth said. “Someone has to help me with everything. I can’t do basic things like walking, grooming or dialing the phone.”

Ashworth has two aides who work 25-hour shifts.

“It pretty much dictates everything we do,” said Tom Roeger, Ashworth’s husband of 13 years. “Cynthia can’t be left alone anymore, so if Cynthia’s aides aren’t here, then I have to be here.”

There is no cure for the approximately 2.1 million people MS affects.

FDA-approved treatments and medicines are available, but Ashworth chooses an alternative.

“I never took (FDA-approved drugs),” Ashworth said. “I was warned to avoid these drugs like the plague.”

She has tried several diets, including one low in saturated fat. Ashworth said she thinks the diets have been somewhat effective: Her hands do not shake as much, and she sleeps better and has more energy.

Ashworth also takes several vitamins and a few non-narcotic painkillers.

With so many questions and no solutions, Ashworth has decided to travel to Mexico for a controversial surgery. The operation is an endovascular surgical procedure for chronic cerebrospinal venous insufficiency, a reported abnormality in blood drainage from the brain and spinal cord, which is now being linked to the nervous system damage found in MS patients.

Though still undergoing research in the United States, the surgery is in practice in other countries, including Mexico.

Ashworth will have the operation at Mexico’s Sanoviv Medical Institute and receive a procedural consultation in October.

“If I can’t get it done here, Mexico doesn’t seem so far away,” Ashworth said. “There is nothing available in the standard medical community, nothing at all. I’m willing to do it if that’s what it takes.”

Dr. Paolo Zamboni from the University of Ferrara in Italy discovered that a surgical procedure similar to an angioplasty — which involves inserting a tiny balloon or stent into blocked veins to improve the flow of blood — might ameliorate the effects of MS.

Zamboni’s research suggests that MS is a vascular condition and not an autoimmune disease.

David Mattson, a neurologist and program director of the Neuroimmunology/MD program at the IU School of Medicine who does not treat Ashworth, said there is not enough medical evidence that CCSVI — said to be caused by too much iron deposition in the brain — is a common problem among MS patients. Sixty percent of MS patients have this problem, he said — but, he stressed, this is not 100 percent.

According to the National MS Society, because of the procedure, one person died of a hemorrhage in the brain while taking a blood thinner, while another patient had a stent that dislodged and moved to the heart, which required emergency open-heart surgery for its removal.

But the risk of the surgery is worth the results for Ashworth.

“I have no quality of life — almost none,” Ashworth said. “It doesn’t really scare me to have it done. I’m willing to go to another country where I don’t know what their medical protocols are. I don’t think it’s a dangerous thing to have done. I think it’s very promising. I’m frustrated and mad that I can’t have it done here.”

More research needs to be done, Mattson said. Such studies are being conducted at the University at Buffalo Medical Center in Buffalo, N.Y., and the Center for Vascular Awareness in Albany, N.Y.

“People are desperate,” Mattson said. “We don’t know if venous drainage could cause further damage. ... MS comes in relapses and remission, so we don’t really know if this actually works. People are getting false hope.”

The prospect of the surgery consumes Ashworth’s life, as well as the lives of those who live with her. She and her aides spend most of their time researching CCSVI and the procedure. They also send letters to politicians, asking to make the surgery available in the United States.

“Dealing with this disease is a major part of my life — not just the complications about daily life, but the time for trying to improve it,” Ashworth said.

Ashworth tries to remain positive about her life, especially with her upcoming consultation.

She has tried to connect with local residents who have MS but felt like the MS support group in Bloomington could do nothing positive for her.

“People there were very negative and would get together and talk about how awful it is,” Ashworth said. “Why do I need to sit with people and talk about how bad it is? I don’t need that, because I live with it.”

Ashworth attempts to focus on what she can do. She is a writer but is unable to type on a keyboard or use a pen. She said she “can’t do the physical part of the writing, but I can go to the mental part of it.”

She is currently writing a murder mystery that takes place during the medieval times. She dictates the fictional novel to her aides, who transcribe the story.

Her positive outlook and ability to focus on what she can do keeps her motivated and busy.

“Considering all that she goes through, I never see her get angry or impatient or mean,” said Deborah Riley, one of Ashworth’s aides. “I would be the angriest, most impatient person all the time. But she is always sweet, loving and gentle. I’m the salty one around here.”

Ashworth contends that life with MS is a difficult one to lead, and depression cannot always be stopped from setting in.

Bursting into tears, she said, “There is no point in being angry, but that doesn’t mean I’m not ever.”