No local medical support

Stephanie Stein
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Sandy Collins, 41, of Wareham has been living with chronic Multiple Sclerosis (MS) for over 20 years, and in December, she received Liberation Treatment in India with the hopes of being liberated from the disease.

WAITING TO BE LIBERATED — 41-year-old Sandy Collins of Wareham has lived with chronic MS for over 20 years.

Liberation Treatment comes from Dr. Paolo Zamboni’s research, inspired by his wife who was plagued with MS. What he found was that 100 per cent of the cases he tested had abnormal veins, restricting or blocking the flow of blood. His research proved that in all cases he found at least two abnormalities in the veins.

Ms. Collins had three blockages with one in her chest, and one in either side of her neck. Her family felt her only hope in getting better was through this treatment.  So, they decided to pursue it further.

They did their research to find that they were not going anywhere unless they had $40,000 to spend. The trip would be arranged through Surgical Tourism Tours, where they would fly to Bangalore, India for treatment. They didn’t know how they were going to pull it off.  After putting the word out to the community, they raised $30,000 in one week.

“A miracle,” said Ms. Collins’ mother, Blanche Dyke. “Thanks to the Indian Bay Lion’s Club, and everyone who made donations from Gander to Musgrave Harbour, Ottawa, Toronto, and Alberta.”

Ann Matthews, Ms. Collins’ caretaker, explained the trip to India was a nightmare. In Toronto, Ms. Matthews discovered she didn’t have an assigned seat besides Ms. Collins. More than $1,200 later, she was able to board the flight with Ms. Collins. After landing in Germany, they were supposed to catch a connecting flight to Bangalore, but had even more issues to deal with. The flight representatives in Germany told them they couldn’t board without proper medical documentation authorizing Ms. Collins could fly. The medical documentation they showed from their doctors in Newfoundland did not apply. So, they scrambled to get the information, and ran to the gate, only to find that again Ms. Matthews was not assigned a seat beside Ms. Collins —  another $1,500 for a seat in a packed economy class, where most of the 10-hour trip was spent supporting Ms. Collins’ head.

After an anxiety-stricken trip to India, they were greeted by many friendly faces holding up welcome signs. Ms. Matthews became emotional as she shared how the warmth of the welcome touched their hearts. An ambulance was there on arrival to transport them to the hospital, where Ms. Collins was to receive treatment. 

“We never saw the outside of anything when we were there, and the people in the hospital were really good to us,” said Ms. Matthews.

While at the hospital, Ms. Collins received treatment, which involved an invasive procedure where a tube was inserted through her groin. Dr. Mohammed Rehan Sayeed at the Bangalor Fortis Hospital performed Jugular Venoplasty with much success. All three blockages were removed.

It was a relief.

“There is hope that she can be rehabilitated with proper treatment.” Ann Matthews

“When she came out of surgery she said all of her aunts and uncles names, and her friend’s names. We could move her legs and arms, they all straightened out, and she’s eating better,” said Ms. Matthews.

Ms. Collins has been truly amazing through all of this, said Ms. Matthews, as she described her as a lovely person. Ms. Collins used to babysit for Ms. Matthews, so they go way back.

“She never complains about anything. Ms Collins always says it could be worse, or grin and bear it – even to this day. If you’re moving her around or bathing her, she says you handle me like a rag doll,” laughed Ms. Matthews.  “This past Monday morning when I came in she said, ‘good morning, what’s it like out today?’”

Even though she’s eating better and is able to utter a thing or two on occasion, one of her blockages has returned.

The family was advised by doctors in India that it was vital to her recovery that she be admitted to a hospital for rehabilitation treatment. With speech therapy and physiotherapy to encourage new blood flow through her body, Ms. Collins had a chance at a new life.  However, due to resistance from the medical community in central Newfoundland, Ms. Collins has begun to deteriorate.

“There’s nobody here that will come to her home, and there’s no openings in the (Gander) hospital, so we’ve been trying to get her into the Miller Centre – I haven’t had a response. The government doesn’t believe in the treatment and getting it done, it’s not covered by Medicare. There is hope that she can be rehabilitated with proper treatment,” said Ms. Matthews.

According to family member, Harry Hunt, who has done extensive research on Ms. Collins’ behalf, the medical community in central Newfoundland does not work with MS patients. In essence, the medical professionals in the community and throughout Canada believe treatment is nothing more than a “placebo effect.”

Currently, general neurologist Dr. Mark Stefanelli at the Health Science Centre in St. John’s has been conducting research on whether MS treatment is necessary for healing, and not just placebo.

Another Liberation Treatment recipient, Mark Lane of St. John’s, has had severe MS for six years and is barely experiencing anymore symptoms.

“If it’s placebo – who cares. If all this treatment gives is hope, don’t take that away.”

While they feel the medical community in central Newfoundland coldly gives its prognosis that MS treatment is unworthy of recognition, Ms. Collins’ loved ones are forced to stand by and watch her deteriorate.

Even with no medical options available in central Newfoundland, they are still waiting and praying for a miracle.

sstein@ganderbeacon.ca

Organizations: Bangalor Fortis Hospital, Miller Centre, Medicare Health Science Centre

Geographic location: India, Newfoundland, Bangalore Gander Toronto Germany Indian Bay Ottawa Alberta Canada

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Recent comments

  • concerned
    April 09, 2011 - 17:59

    OMG the newspaper must have made a terrible print mistake when they printed the cost because it is only 5000. - 7500. US dollars at multiple sites, in the United States now. New York City 5000.00 US Dollars only Dr Gary Siskin, Rhode Island 6500, Florida Tampa, 7500. , California 8100. Vascular Access Centre. Stay local, one week booking times only, lots of fellow msers and newfoundlanders to help you chose a proper surgical centre in America. Better yet please wait until the clinical trials are complete so that everyone can see what the long term complications may or may not be. Again only 5000. for the procedure in NEWYORK run as far away possible from others who will only try to steal thousands of dollars from you. We have lots of volunteers all across Canada to help. CCSVI in MS Toronto CCSVI at UBC CCSVI in Multiple Sclerosis CCSVI Alliance Organization Most important many volunteers in your great province to talk with.

  • Shirley renshaw
    April 09, 2011 - 16:46

    I guess you did not like my comment. Oh well. It is sure hard to be very nice and then get knocked down and basically told I have no right to get help. I have run out of honey because being ignored and discriminated against it is so hard and all I have left is vinegar which is what I feel they are giving me. I and ME is meant for all MS suffers who have been done wrong to. And continue to dismiss us. I wonder have you been told not to post my comments because the Canadian Multiple Sclerosis Society have had their feelings hurt?

  • Shirley Renshaw
    April 08, 2011 - 13:03

    As I was reading your request below on being courteous, no insults or discriminatory remarks made me chuckle. Because of this article concerning Ms Collins struggles all those rules entered my mind! I wanted to be very courteous BUT I wanted to be very insulting and comment on how discrimination has made people with this awful condition being classed as unworthy and classed even lower than lab rats. Well I want to say a lot more but I think you get MY point. I wish for Ms. Collins and all those with MS to stay strong and keep up the fight so we can get our rights as everyone else has that DO NOT have MS. This is so unfair and a human rights issue which we are not allowed to have either. IGNORING us seems to be working very well. Our federal and provincial governments are unwilling to help us. Can someone help us? This is so wrong. The government listens only to the Canadian Multiple Sclerosis Society. They WERE our advocates but since this simple Angioplasty treatment became known they have done a 180 and turned their backs on us. Why? They claim it is a HOAX and the only treatment are drugs.

  • Katherine
    April 08, 2011 - 12:16

    What a disgrace! The public needs to know what is happening to MS patients. There are studies being published more and more frequently confirming the existence of venous abnormalities in MS patients and the safety of the procedure to correct them. They are not asking for anything "experimental" or "controversial", it is angioplasty, performed everyday in hospitals across Canada. Why is Canada allowing prevention of after care for a vascular condition? It is because a vascular surgeon made this important discovery and they have wasted years chasing the auto-immune model with very little advancement? Sandy Collins needs the help of a vascular expert. How dare anyone deny her that just because she happens to have MS.