A Vanderhoof resident had become one of the latest patients to receive a controversial new multiple sclerosis (MS) treatment that is not yet available in Canada.
In June this year, MS sufferer Eleanor Penner along with her husband Andy and her daughter Dana, traveled thousands of miles to a hospital in Bangalore, India, to undergo “the liberation treatment” which she says has completely changed her quality of life for the better. “There’s no comparison,” she said last Thursday when comparing the way she feels now to how she did six months ago. “I wake up every morning and I thank god.”
The procedure was developed by an Italian team last year and is alike to the angioplasty treatment used for heart problems. A device with a deflated balloon is inserted into a blood vessel in the groin and guided to areas where there is a narrowing, and there the balloon is inflated, unblocking the vessel and restoring proper blood circulation to the brain.
While many MS patients swear by the treatment, there are many who have hotly contested it, saying its too risky and purely an experimental treatment.
As a MS sufferer since 1992, Penner has spent years of her life in constant pain and suffering. It’s a hugely debilitating disease that causes nerve damage and a variety of symptoms that can result from disrupted communications between the brain and the rest of the body.
Penner’s first big MS attack occurred in 1992 when she was 33 years old. Over a period of a few days she gradually became completely numb from her feet to her waist. It took two years for her body to completely get over the attack. Doctors diagnosed her with Transverse Myelitis, a disease defined as an inflammation of the spinal cord. She was warned that the condition could turn into MS.
Between 1992 and 2007, her condition worsened.
“I started going numb more and more, I could hardly walk, my back would give out, and I’d have muscle spasms so bad I’d end up in the hospital with morphine shots”, she recalled. However, Penner admitted being naive about her condition: “Despite all those things, I still felt I wasn’t going to have MS – I thought I was going to beat this thing.”
In 2007 her condition deteriorated even further and she ended up in hospital again. She was seen by a different neurologist who told her she had secondary progressive MS which is a advanced stage of the disease where you have no more remission, and you are steadily on a down hill decline.
“I had to face the fact, I could no longer fight it.”
The last few years have been hell for Penner and her family…”I had a headache for four years straight. I never had a break. I woke up in the morning with a headache and I went to bed with a headache.”
As well as the constant head pain, Penner also suffered from nerve seizures in the face causing terrible pain through her ears, eyes and cheekbones down through her teeth, jaw and neck. She likened the pain to “lightening bolts.” She also described a foggy feeling in her head, causing problems with her memory and comprehension, making conversation difficult. “If you and I were talking like this…I would see your lips move but I wouldn’t really comprehend what you were saying. I’d even hear the words but the comprehension wasn’t there. It was like fog, making it hard to understand and remember things”, she said.
MS also has various stages of fatigue that Penner suffered from.
“My left side was mostly affected by the fatigue. If I was to carry two cups of coffee my left hand would just turn inward…I just physically couldn’t hold onto it. Or if I wanted to peel a potato, I would try and hold it and pull the peeler across but it would fall out of my hand.”
Her left leg gradually became more and more affected by the disease and she developed drop foot in her left foot, which meant she couldn’t pick it up anymore, often scrapping the skin off the top of her toes without even noticing.
Multi-tasking was out the window as you can only concentrate on one thing at once. If she was to look away whilst walking for example, she would fall over.
She only had enough strength to walk 50 steps in a day and then all her strength was used up, so she had to have an electric wheelchair in the house to get her around.
“If I walked the length of our house in the morning, that was it – I had no more walking for the rest of the day at all.”
An attack in January this year but her totally flat on her back and it took her until May before she was able to drive again, and even then she could only drive once a week with help.
In April this year Penner and her family booked the trip to India through Surgical Tourism Canada and on June 29th they flew out to Bangalore.
Penner had seen the treatment on the news before and ignored doctors who advised her not to go because it was too risky.
“I don’t know how it can be such a risk because they do angioplasty to the heart every day and this is just going a little bit further.”
Once in India, an ultrasound revealed that Penner had a 70 per cent narrowing in a vein on the left side of her neck that was about an inch and a half long making her eligible for the treatment.
Before the surgery, the doctor had warned Penner not to get her hopes up and not to believe all the stories of people being instantly cured on the table. She was told not to expect anything right away but that small improvements should be seen over a period of six months or longer. “I still hoped I would be that miracle person” she admitted.
During the hour-long surgery which is performed under a local anesthetic, Penner described a loud popping sound by her ear and the crunching sound of somebody walking on loose gravel before experiencing her “almost miracle”, a few minutes later.
“It felt just like a cool hand…it went across my head and all that pressure that I had in my head for four years, it was like someone took a cool hand and just wiped the pressure off…it felt so great. It just wiped away the fog and then the sharp nerve pains in my face dissipated…it was amazing”, she recalled.
The morning after the surgery she woke up to find her hands, which had been numb up to the second knuckle for two years, had woken up again and the large majority of her constant pain had gone. That was the last time she had morphine and since then her medication has halved.
“Before we went to India, I was on two morphine a day and I was under constant medication. I could barely function,” she remembered. “The way I feel now is no comparison.”
Since returning from India on July 11th, Her recovery has taken leaps and bounds.
“it took me about three weeks from the time of the surgery that I could get up with my cane and walk to the van and drive to town… and within five weeks I was grocery shopping…something I hadn’t been able to do for two years before that.” She’s even been able to get back to the gardening, one of her favorite hobbies.
She doesn’t know if she will make a full recovery but she says that doesn’t matter…”It’s ok if I don’t fully recover…I already have a better quality of life now than I thought I ever thought I would six months ago.”
Penner said whilst her doctors here are happy to see her feeling so much better, she now needs a referral to do follow up tests to see if the iron levels are coming off her brain and if the vein is staying open, but because its not a recognized treatment in Canada, she will probably have to pay to have them done privately.
In recent news, federal Health Minister Leona Aglukkaq has said the government will wait for more research before going ahead with clinical trials for the treatment in Canada, but Penner says many MS suffers who are getting sicker by the day can not afford to wait.
“There have been two benefits in Vanderhoof for MS patients since I’ve been home and I encouraged them to get the treatment as soon as they can…don’t wait until you cant move…go right away.”
Booking the trip and treatment to India may have set back the Penner’s nearly $30,000 but Eleanor maintains it was worth every penny…’”I’d do it again in heart beat if I had to.”
