I have had little personal contact with multiple sclerosis since the early 1980s, when I wrote a speech for a girl who was a contestant in a local beauty contest for the title of Carnation Queen.
It would be fair to say that my interest in MS fell well short of my interest in the contestant.
She won the contest and there was some media indication that her speech was a decisive factor in her victory. My massive ego has always agreed with this assessment even if my eyeballs saw something different in the equation.
But things changed dramatically in 2008 when my brother-in-law Greg Chury was diagnosed with multiple sclerosis. Greg had experienced symptoms that he attributed to “getting fat and old,” to quote him. Greg’s sense of humour is still very intact.
Greg believes that he had the disease for at least 10 years prior to his diagnosis.
His actual diagnosis of MS was a sterling example of the inherent structural weaknesses in the Alberta medical system.
Greg went to his family physician for an initial examination and discovered the factory-style system in which patients are given roughly 10 minutes with the doctor for an interview. This Reader’s Digest condensed style of medical exams is necessary for a maximum flow of patient/doctor numbers per day to meet the overhead.
The physician decided that Greg should get an MRI to answer a few questions about the illness. The health-care system meant that he would have to wait for at least six months for a government-issued MRI. Or he could pay for it himself and book an immediate appointment.
Greg picked an immediate MRI because his health is even more important than choice scalper front row floor seats at a Jimmy Buffett concert, and probably around the same price.
The results produced an immediate reaction in his physician and subsequent fear of the unknown in Greg. His doctor fast-tracked Greg into an appointment with a neurologist, another process that typically takes six to 12 months.
The neurologist laid out medical treatment options for Greg as a newly diagnosed MS patient. Greg was reluctant to pursue the range of standard medication options because he and his wife Kathy (my sister, who is an RN) were not comfortable with the side effects.
Initially they made some major diet and exercise alterations to Greg’s life and the results were positive, but MS is a progressive disease, so Greg’s mobility and stamina started to diminish over the course of time.
Greg and Kathy did some serious research into alternative MS treatments and discovered that CCSVI liberation treatment was an option for MS patients. The surgery to widen blood vessels in the throat is not widely accepted in conventional medicine as a possible treatment for MS.
But enough MS patients had gotten positive results for two rational and intelligent people like Greg and Kathy to fly to Merida, Mexico, for Greg’s surgery. The vascular/neurologist who performed the post surgery assessment was also the first medical professional to inform Greg that he had progressed into secondary progressive MS from a relapse/remitting event stage.
The surgery went well for Greg. He has regained enough mobility and stamina to conclude that he is better than before the surgery. He is also a realist and he knows that his illness is under a temporary restraining order.
Greg’s greatest victory is the ”end of cognitive fog,” as he describes it. Greg is a bright guy and he likes to challenge himself mentally in life. The liberation therapy has given him a clearer thought process and that is very important to him in his career and as a person.
He believes that his surgery is well suited for MS patients in the initial stage (relapse/remitting) because it may prevent progression into secondary progressive MS for some people.
He also believes that liberation treatment is not a cure, but it may stem the tide of advancement while research for a cure is ongoing for MS.
He feels a great deal of sympathy for latter stage MS patients who are confined to wheelchairs and likely beyond the effects of surgery.
The message that Greg would like to share with the world is that early diagnosis of MS is critical to the success of his choice of surgery. But a patient may have to jump through many medical hoops, including an overloaded system and dismissal of unconventional treatment, to achieve success at this point in the MS game.
For Greg and Kathy, it has been worth the enormous personal expense. Let’s hope that future MS patients benefit from their experience.
Jim Sutherland is a local freelance writer. He can be reached at firstname.lastname@example.org.