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Thursday April 24th 2014

MS sufferer liberated

A Red Deer woman has been one of the latest multiple sclerosis patients to benefit from a new treatment, known as the “Liberation Procedure,” that has been welcomed by many MS patients and medical staff, but also scorned by many doctors.

Phyllis Johnson, 55, was diagnosed with multiple sclerosis in 1997. She was a nurse working at the penitentiary in Drumheller, where her husband Neil Johnson was a guard, when she started to notice a numbness in her tongue. Her doctor sent her to a neurologist and they told her she had MS.

Multiple sclerosis is the most common neurological disease affecting young adults in Canada and it can cause loss of balance, impaired speech, extreme fatigue, double vision and paralysis.

Phyllis had a fast-acting form of the disease and it wasn’t long after being diagnosed that she was in a wheelchair. She had to give up her career as a nurse, training she had worked hard to get as an adult at Red Deer College. Neil took early retirement to be able to look after he wife and they moved to Red Deer 13 years ago to be closer to a hospital with many neurologists and to have access to an Multiple Sclerosis Society of Canada office, where they could have a connection with the disease.

Phyllis and Neil headed out on July 5 for the Liberation Procedure, staying until July 22 after Neil came down with food poisoning. They flew to Germany and then flew to Bangalore, India, booking the trip and the treatment through Surgical Tourism Canada. Before heading out they spoke to many other MS sufferers who had undergone the procedure.

The Liberation Procedure took place on July 9, on her husband’s birthday. Phyllis calls it her “lucky day.” Two stents were put into veins in her neck to increase the flow of blood.

Before the operation Phyllis was constantly in pain, with Neil often putting hot compresses on her in the middle of the night as she cried out in agony. She couldn’t move her right arm or her head, even speaking was becoming a challenge and her memory was going.

But now just a couple of months after the surgery, although Phyllis is still in a wheelchair she has seen a world of difference in her comfort levels. She is dropping the amount of morphine she needs to use and thinks very shortly she may not have to use it at all. She can move her right arm and her head from side to side.

Phyllis can carry on a good conversation easily and her memory is fine again.

“The biggest thing for me is the pain is gone,” Neil said. Before the operation his wife of 35 years was as pale as a sheet of loose leaf paper, but he has seen the colour go back into her cheeks.

She has been going to physiotherapy at the Red Deer Regional Hospital Centre, working with Karen and Jeff and occupational therapist Hillary — all of which she credits and thanks for helping her further with her recovery.

The procedure, with travel and lodgings cost the couple close to $30,000, but Neil said it was worth it just to see his wife no longer having to suffer through the pain.

Neil and Phyllis would both like to see the Canadian medical community and the Canadian government start looking into and funding the procedure and can’t understand why they haven’t moved forward with it.

Neil said if 100 MS patients go to India for treatment and 99 of them experience a reduction in their symptoms why wouldn’t the government look at funding research into the procedure.

“I urge the government to look into this,” he said.

Phyllis said she would like the government to do more, with Canada having one of the highest rates of MS in the world. “They’re doing nothing. They’re doing absolutely nothing for us,” Phyllis said.

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One Comment for “MS sufferer liberated”

  • Dr Trevor Tucker says:

    Is the Neurology community addressing research attention to the functions of the brain’s capillary bed and the impact on those functions of the back-pressure by blood reflux from venous stenosis, occlusions and or malfunctioning valves?

    To review in simplest terms – the primary function of the brain’s capillary bed is to intake fresh blood from the arteries, transfer fresh oxygen and glucose through the capillary bed and its associated blood-brain barrier into the brain and to also flush out carbon dioxide and other impurities through the veins. This amounts to a two way filtering system, refreshing the brain’s supply of oxygen and sugar while removing carbon dioxide and other impurities. The efficiency of this filtering process would, at minimum, be reduced by backpressure from reflux in the veins upsetting the pressure gradient across the bed. According to Starling’s Equation this later must certainly be the case. The effect on the brain of accumulated impurities and unrefreshed oxygen and glucose over many years of such abnormal pressure distribution could arguably be very substantial. Clearly some of the impurities that are passing through the BBB into the brain in MS patients include iron and T cells. Under normal blood pressure circumstances the BBB blocks the passage of such iron and T cells into the brain. But under the abnormal blood flow condition of venous stenosis, abnormal filtering is likely occurring. It might be noted that the widely reported increase in energy and reduction in brain fog reported by MS patients immediately after having the vein blockages removed would probably be consistent with increased oxygen and glucose in the brain.

    Returning to my initial question – have the Neurologists considered the physics of fluid dynamics on the complex bio-chemical interactions that they discuss in their research papers? If so, what was the result? If not, why not?

    Let’s see if we can’t encourage the Neurological and Vascular Scientists to work collaboratively together in addressing this fundamental problem. I am especially addressing the Neurologists since they have held the field for the last 25 years and it is conceivable that their current scientific background alone is not sufficiently complete to come up with a complete solution.

    Finally, if venous stenosis is ultimately demonstrated to have a causal influence on MS then there are many years of Neurological Science ahead to clean up the damage left in the brains of MS sufferers.


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