A week and a half after undergoing “liberation” treatment for multiple sclerosis in Costa Rica, Dawn Grainger continues to notice subtle and sometimes surprising improvements.
Before the procedure to open constricted veins in her neck, and for several days afterward, the Port Dover woman had to crawl into a shuttle van when travelling.
On Monday, “without thinking, I was able to step up and into the van,” Grainger, 69, told The Expositor in an email from Costa Rica.
“It only occurred to me a few minutes later that I had done this. Many other patients here have noticed similar subtle improvements. They do something very ordinary and then realize shortly after that it was something they haven’t been able to do in years,” she wrote.
Grainger, a former executive director of the Brant United Way, is expected home on Wednesday.
She has had a history of multiple sclerosis that goes back more than 30 years. However, the disease was in remission for a long time.
Symptoms returned about a decade ago and, after using a cane to get around, Grainger was eventually forced to use a walker. She also had cold feet and suffered from fatigue.
She is one of a growing number of Canadians with MS who are heading overseas for testing and liberation treatment that is not currently available in North America.
She travelled to Hospital Clinica Biblica in Costa Rica in mid-August to undergo testing for -and treatment of -what has been dubbed chronic cerebrospinal venous insufficiency (CCSVI) that she hoped would increase her energy levels, banish the cold feet and help her get around without a walker.
Since the procedure, on Aug. 21, Grainger has noticed a significant lessening of fatigue through the day, better sleep, improved mental clarity and focus, waking up with a clear head, improved bladder function, mobility and increased sensation in her lower extremities.
Previously, she had no feeling in her feet and now she said she is finding herself able to do “many little things” she could not do before such as crossing her legs, tapping her toes and lifting her foot.
Grainger said that about 80 people have come through the CCSVI treatment program at the Costa Rican hospital since June, and the program is booked through November. About 90% of the patients have come from Canada, while most of the rest come from the U.S., she said.
Grainger credits Clinica Biblica with also providing an integrated program that includes intensive physiotherapy following the liberation procedure.
She said she is not aware of any other CCVSI treatment facilities that currently offer such an integrated program.
Grainger said she was being pushed “quite hard” and already noticed improvements in her strength.
On Friday, Grainger had “my hardest physio session so far, but still feel energetic this afternoon,” she said in an email.
“Symptoms seem to be less severe each day and more and more I becoming convinced that ysiotherapy will be key to realizing the benefits of the liberation procedure long term,” she wrote.
Grainger hopes that by continuing physiotherapy when she gets home she will continue to see small daily improvements in mobility indicating that the damage done to the nervous system from MS is being repaired.
“I will have a better idea of what improvements I’m experiencing when I get home and return to my daily routine,” she wrote.
Physiotherapists at the clinic have asked Grainger to videotape her progress once she returns home and send it to them periodically so they can suggest new exercises corresponding with new levels of mobility.
While expanding the constricted veins seems to provide improvements for people with MS, Grainger said that she had been told it is possible that the veins can return to their previous narrowed state, as has happened to a few patients so far.
Doctors in Costa Rica have suggested that Grainger get follow-ups every six to 12 months to check whether her veins still have good blood flow.
That could be a challenge back home and may or may not be possible, she said.
One of her concerns is that she will not get the medical care at home that she is receiving in Costa Rica where neurologists and cardiac specialists work closely together.
“If it comes to the point that I have to return to Costa Rica annually for checkups, it may not be possible financially, but I will make every attempt to find a way to do so,” she wrote.
In the meantime, she hopes that less expensive options will become available to Canadians at home.
Paciente con EM desde hace 10 años. Dagnóstico confirmado hace seis. Usando bastón desde hace 9. Aumento de inestabilidad desde año 2009. Soy candidata a tratamiento de CCSVI?Garantía de tratamiento?
Dawn, your story is inspiring, and I hope you are continuing to improve and do well. I am having the procedure performed on April 12, 2011 in NYC. Maybe traveling to the U.S. for follow-up care will not be as cost prohibitive as traveling back to Costa Rica. I hope you receive all the care required. I find it very intriguing that phyisiotherapy has helped you. I don’t know yet whether that is something I will be offered, but I certainly plan to pursue it since you’ve noted how much it has helped you. Thank you for sharing your story.