NOTL woman with MS reaps benefits from 'liberation' treatment
Gail Martin has Multiple Sclerosis, and understands she will always have it.
But that doesn't stop her from believing that the liberation treatment that has been the subject of such controversy and debate has also been the miracle she was hoping for-for her, though not, she cautions, for everybody.
A process to unclog veins from iron build-up that prevents blood from draining from the brain efficiently is still being studied in Canada. It has been touted as a treatment that could reduce the debilitating fatigue of MS sufferers and reverse some of the symptoms, and had Martin believing, along with thousands of others, that her dream for a cure was about to come true.
It's a simple procedure similar to angioplasty put forward by Italian doctor Paolo Zamboni, but without Canadian research to back up his claims, the procedure is not offered to MS patients in this country.
Martin, although advised by her Toronto doctor to be patient, wasn't going to wait for Canadian research. She put herself on the waiting lists of several clinics in the US that were offering the treatment.
With MS, she says, time is not on your side.
While some MS sufferers have travelled overseas for the procedure, Martin simply crossed the border to the Cardio Vascular Institute of Rhode Island.
It took about an hour and a half to have the angioplasty performed on several sites of restricted blood flow in both her left and right jugular veins, she says.
When first diagnosed with the disease more than 30 years ago, she had been seeking help for episodes of numbness and pain in her feet and legs, stumbling and falling, and suffering the overwhelming exhaustion that is caused by relapsing and remitting MS.
At 62, she had learned to live with the symptoms, the good days and bad, but was always in fear of what was around the corner for her.
She hoped from this procedure to be rid of the constant pain in her feet-she would have been more than satisfied with that result. Instead, the difference she felt immediately was in her head-for the first time in years, she felt like the fog had lifted.
She describes herself pre-treatment as always feeling sluggish and groggy, as if from lack of sleep, even when she had just woken up from
12 hours of sleep.
That feeling was gone immediately, she said-she felt completely clear-headed, been blocked.
Although her feet felt somewhat better, she still had some pain. But since the treatment two months ago, they have steadily improved, with only the occasional twinge at night now.
And the overwhelming exhaustion has gone, so much so that she is constantly on the go, sometimes overdoes it, often has only six hours of sleep, and still feels much better than she used to on 12 hours of sleep.
To those who offer the placebo effect as an explanation for the people who find a benefit from the treatment, she says she had no expectation that it would affect her hearing, or clear her mind-those were surprise bonuses.
And if believing the treatment works has made her feel as good as she does, she'll take it, she says, recalling words of doctors about the importance of a positive attitude.
Her husband John Kaloyanides says their lives have changed drastically-they no longer have to schedule downtime every other day so Gail can recuperate. They can make plans for the future without worrying about her energy levels.
"She just wanted some relief from nerve pain, but what she got was so much more than that. It's incredible, the change in her."
And all this for $6,500-that was the total cost of the treatment.
Considering MS sufferers can pay $1,600 to $2,000 a month for drugs, some without benefits to help with the cost, that seems a small price to pay, Martin says.
She understands that there are contentious, disputed issues about the treatment, that there is a process to follow, that Canadian doctors can't rush to a conclusion.
But she also knows the frustration of thinking there might be a treatment that offers some relief, but that to some, it's out of
Reach-and that as they wait and their condition worsen, the treatment
Becomes less effective.
Her doctor at the Rhode Island clinic told her that one-third of those with MS who have had the treatment at the clinic found some benefit, one-third reported significant benefit, and one-third experienced no benefit at all.
She has spoken to some MS sufferers, and their family members and care-givers who also are tremendously affected by the illness, and has heard their heartbreaking stories about having the treatment, to no avail. She chose to accept the odds.
"I shouldn't have had to travel to another country for it. If doctors had to live for even a week with the nerve pain of MS, maybe they would feel differently. The key is access. We should all have the choice, even if it means we have to pay for it."
Martin knows her life could change in a heartbeat. "It has for me in the past and it could again."
She hesitates to give what could be false hope to some-it won't be everybody's miracle, she says.
But for now, at least, she believes it was hers.