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Screensize: 640 x 480 800 x 600 1024 x 768 1280 x 1024 UserName: Password: Format Mode: Basic  Help  Prompt  Format: Font Andale Mono Arial Arial Black Book Antiqua Century Gothic Comic Sans MS Courier New Georgia Impact Lucida Console Script MT Bold Stencil Tahoma Times New Roman Trebuchet MS Verdana   Size 1 2 3 4 5 6   Color Black Red Yellow Pink Green Orange Purple Blue Beige Brown Teal Navy Maroon LimeGreen Message: * HTML is OFF * Forum Code is ON Smilies [quote][i]Originally posted by shawnsmith[/i] [br]Hugh Adami: Family struggles to pay for surgery OHIP won’t fund Man says Ontario doctors can’t or don’t perform procedure to end suffering BY HUGH ADAMI, OTTAWA CITIZEN NOVEMBER 2, 2013 http://www.ottawacitizen.com/health/Hugh+Adami+Family+struggles+surgery+OHIP+fund/9114504/story.html Adam Gard has to go to the U.S. for a desperately-needed operation he says neurosurgeons in Ontario can’t or don’t seem willing to do. And the Ottawa man is relying on a fundraising drive by family and friends to pay for the $70,000 operation because he isn’t getting any help from OHIP. Ehlers-Danlos syndrome, an extremely painful genetic disorder, has made Gard’s life utterly miserable for the last three years. Gard, who is married and has two young boys, is travelling to Baltimore next month for spinal fusion surgery. It will be performed by Dr. Fraser Henderson, a neurosurgeon, who has performed more than 200 such operations. Following his “journey of three years” to try to find out what was wrong with him, Gard says he discovered that little seems to be known in Ontario about the rare condition. Gard, 40, says there has been much suffering: severe dizziness, vomiting and flashes of pain throughout his body. One day during the early stages, he spent 12 hours lying on the floor of his Westboro home, waiting for dizziness to pass. Eventually, his neck started acting up. There was pain and stiffness. It could feel it grinding as he turned his head. He had bad headaches. He says he went “from doctor to doctor to doctor, and everybody failed to connect the dots.” One doctor thought he was suffering from a virus. Others believed the dizziness and pain were caused by anxiety — an actual symptom of the disorder. It was suggested he take a holiday to chill out. But Gard says he knew something was terribly wrong, especially as the symptoms became worse. He says he persisted to get a proper diagnosis. Finally, he was sent to a local neurologist, who Gard says was determined to find out what was wrong. He suspected EDS after several visits, but would not make a definite diagnosis because Gard says he felt he did not know enough about the condition. He told Gard it would be best if he sought help in the U.S. because the Ontario health system lacked EDS resources. He gave him Henderson’s name. EDS is a rare and degenerative condition involving the body’s collagen — connective tissues — that holds the body’s joints together. In Gard’s case, faulty collagen first resulted in simple ailments such as a dislocated thumb or shoulder, which didn’t raise any suspicions. But when his condition became full-blown and he was diagnosed by Henderson last June, muscles and ligaments supporting his head on his spine were found to very weak. This is causing his head to sink onto the brain stem. As well, the degree of movement of the top two vertebrae in his spine is way out of whack, and that’s causing compression of his jugular vein. Cartilage in his spine is also deteriorating. He now wears a neck brace for support. The surgery should solidify and support his upper neck, and protect his spinal cord. He is scheduled for the operation in Baltimore on Dec. 2. Without the operation, Gard would end up severely disabled and in wheelchair. The surgery will not rid him of his condition, but it will allow him to manage it. He expects to remain in Baltimore two to three weeks. Though Ontario’s health ministry says it paid almost $930,000 for out-of-country EDS surgeries in 2011-12, Gard says that isn’t much when you consider the cost of just one operation. He believes part of the problem in getting out-of-country EDS operations paid for by OHIP lies with Ontario’s neurosurgeons. Kingston-area residents Charlie Smith and his sister, Jessica Covey, faced the same roadblocks in getting OHIP to pay. “Not only can we not find a doctor that recognizes this condition, but there’s no doctor that seems willing to perform this surgery,” Covey told the Brockville Recorder and Times in 2012. “We haven’t been able to apply to OHIP (for out-of-country surgery) because no neurosurgeon in Ontario will ... fill out the forms (acknowledging) they don’t have the skills to do it.” But the health ministry says neurosurgery “to stabilize joints in the neck” is available at 11 hospitals in the province, including The Ottawa Hospital. How strange then that Smith and Covey also had to go to Baltimore to have their surgeries performed by Henderson. Family and friends held fundraising drives to help pay for the $200,000 cost of the surgeries — two for Jessica, 27, and one for Charlie, 23. The fundraising paid for more than half the cost. OHIP has not provided a penny. Their mother, Christine, says the surgeries turned her children’s lives completely around. Before his surgery last November, Charlie was confined to his bed or wheelchair. Jessica has resumed her studies at Queen’s University and Charlie plans to enrol at St. Lawrence College next fall. Gard plans to visit the siblings this month to talk about their surgeries. About $12,000 has been raised so far for Gard, who says he is extremely grateful. Some donors are complete strangers or people he hasn’t seen in years. Donations can be made at saveadamfromeds.com. There are other fundraising events planned. Despite it all, Gard somehow found the will to keep working as much as possible at Goldwing Autocare, an auto accessory shop he operates with his brother. He also works on the side as a small housing developer. Working, says Gard, who would not be eligible for employment insurance, helps him focus away from his aches and pains. But his wife, Ruth Rathwell, says it has still been a struggle for her husband to go to work. Gard worries that he might have passed on the disorder to his sons, Jackson, 3, and Bronson, 2, as he suspects his father did to him. There is a 50-50 chance, he says. The severity of the condition also varies from person to person. Some go through life only mildly affected. His wife is concerned for their sons, too. “What does their future hold for them. I’ve been told not to worry, but ... ” She says she’s been touched “by the outpouring of support.” It has been “overwhelmingly wonderful. It’s amazing to see people come together with so much love and support.” [/quote]   Check here to include your profile signature.