At just 34 years of age, Red Deer resident Melanie ten Haaft endures relentless pain that has impacted her life to a point she never could have imagined.
September 18, 2008 started out like any other day for ten Haaft, who at the time owned a cleaning business. She arrived at a city house to begin work and suddenly her life changed forever. She tripped over some work boots, fell down some stairs and knew immediately she had seriously injured her left foot.
The prognosis at first was positive. Doctors told her that within four to six weeks she should be able to walk on it again. But things didn’t get better.
“After the first couple of weeks, I knew there was something wrong. My leg was turning purple and the bottom of my foot was turning black,” explains ten Haaft, who ultimately lost her business because of her condition. After four weeks, she still couldn’t apply any pressure on her leg. Putting on socks or even having a blanket on her bare leg was unbearable.
“Trying to bathe it is insanely painful. Things that you totally take for granted I can no longer do. To get dressed is agony.” She eventually began physical therapy.
“Even for them to put the wand on my leg for the ultrasound hurt. I would start bawling my face off every time.”
Doctors eventually came to the conclusion that ten Haaft suffers from Complex Regional Pain Syndrome.
“I know I look fine, but if the limb was exposed then I don’t look fine,” she says of the horrendous pain and its impact on her body. “And if you touch my leg, you’re going to send me into such a frenzy that you wouldn’t be able to catch your breath.”
Essentially, there is a six-month window after an injury to correct the damage, to have a really good chance at getting back to normal. But by the time the condition was diagnosed, it had been nine and one-half months since her fall.
Doctors suggested nerve blockage treatments. “We went there every week for 10 weeks, to no avail,” she says. “I was just put through more pain.”
After the 10th treatment, the doctor told her the treatment wasn’t working. It was then back to the family doctor. But ten Haaft wasn’t giving up. “I said this cannot be the end. Medication for the rest of my life and being where I’m at cannot be the end.”
She even asked if her leg could be amputated. “I said can we cut my leg off? Then I can get a prosthetic and I can work again.”
But local neurologist Dr. Jennifer Bestard explained ten Haaft would be left with phantom pain – another tormenting physical nightmare in itself. Another possibility ten Haaft had learned about was to be placed in a temporary coma and given massive doses of nerve block injections. A controversial treatment, she said it’s not even offered in North America.
“She’s had to modify her whole life,” said Bestard, adding that the medical community isn’t absolutely clear on why some injuries mushroom into such debilitating conditions.
“It’s very rare, and it also takes a long time to diagnose.” Bestard said she is all for ten Haaft pursuing hyperbaric oxygen therapy, although she admits she’s not sure of the treatment’s overall impact. “I would totally encourage her to go in this direction.”
Meanwhile, the long days stretch on as she continues an arduous physical therapy routine with painfully slow results.
“This is one of the most painful and difficult to treat neuropathic pain syndromes,” said Dr. Bestard. “She is constantly in excruciating pain and is not able to weight-bear or have anything touch her skin.”
Still, Bestard said ten Haaft has kept up her spirits despite the disability and her relative youth. But without easing of the pain, she doubts that ten Haaft will ever be able to work again.
But there is another potential treatment that ten Haaft has her sights set on – hyperbaric oxygen therapy. ten Haaft said she has to fly to Vancouver for the treatments, which would total about $20,000. Hyperbaric oxygen therapy involves the breathing of 100% pure oxygen while in a sealed chamber pressurized to greater than normal atmospheric pressure.
She said she is planning to go to Vancouver because the Alberta government won’t help pay for the treatment.
John Tuckwell, spokesperson for Alberta Health and Wellness, said the province does cover hyperbaric oxygen therapy for some conditions. And while ten Haaft’s isn’t listed specifically among them, he recommended her physicians dialogue more closely with the province as there could perhaps be a connection between what she suffers from and a condition that is covered under the province.
He also said there are chambers in Edmonton and Calgary, and accessibility to them would have to be more closely examined.
Meanwhile, ten Haaft’s friend Shelly Lienau has organized ongoing fundraising through PartyLite, which sells candles and a variety of accessories. She can be reached at 403-980-9979.
Other fundraisers are in the works as well, including hot dog sales at the south Save-On-Foods. Those are set to run July 9-10 from 11 a.m. to 3 p.m.
Regardless of what, if any further treatment is covered, the family still has challenges to face. They’ve even put up their house for sale in hopes of raising money for the treatments. “It’s going to be the fundraising or selling the house – whatever happens first.”
But ten Haaft is confident in the generosity of Central Albertans.
“A man approached us one day in the mall when I was in my wheelchair. He asked why I was in a wheelchair, and I told him. He asked me what the outcome could be, so I told him about the Mayo Clinic in the United States and the hyperbaric oxygen therapy chamber.
“He asked me how much it was going to cost, and I replied that it was way out of my affordability. He then went out to his truck, got his chequebook and wrote me a $1,000 cheque,” she says, the gratitude still very resonant in her voice. It proved a touching moment for both of them.
“I was crying in the mall, and he was crying.”
Part of the frustration for ten Haaft is that outwardly, she looks healthy. “But if you knew how much medication I take everyday,” she says, referring to the six painkillers she relies on daily. But perhaps the most painful part is when she thinks about her family, which includes her husband Herman and her 16-year-old son Chase.
The tears flow when she considers the isolation her condition has brought to her life as well.
“If it wasn’t for my family and close friends,” she says, her voice trailing off. “In a wheelchair, you also kind of become invisible. People will come and almost walk over you, because you’re not there.”
For more information about how you can help ten Haaft, call her at 403-505-0736.