Local woman with scoliosis seeks treatment in India
Danielle Fry of Chicora is hoping to take a trip abroad next month. But it's certainly not a trip for pleasure.
Fry, a 41-year-old counselor for Victim Outreach Intervention Center (VOICe), wants to travel to Chennai, India, for an operation to prevent the pain of her scoliosis from getting worse.
For the last 30 years, Fry has been dealing with a sideways curvature of the spine. Scoliosis occurs most often during a growth spurt just before puberty.
“It's called idiopathic,” Fry said. “There is not a direct known cause of it. I was 11 years old when they found it.
“The way we found out, one day when I woke up, I couldn't move my head,” she said. “My ear was touching my shoulder, and I couldn't move my head at all.”
At first, Fry's condition caused her more discomfort than pain. And it never hampered her as she attended Moniteau High School, graduated from Slippery Rock University with her bachelor's degree in social work and earned her master's degree in counseling through Waynesburg University.
She also runs the women's ministry at her church, By His Grace Christian Ministry of Butler.
“It never kept me from being active,” she said. “You have to keep moving, especially when you sit all day for counseling.”
Fry works with survivors of domestic violence, sexual assault and other violent crimes for VOICe, a nonprofit agency.
“I have been to Haiti on a mission trip, drilling water wells and sharing the gospel with Haiti villages,” Fry said. “In college, I went to Costa Rica and worked in an orphanage.”
When she was younger, her chiropractor at the time took a wait-and-see and hope-for-the-best approach to her scoliosis.“They weren't going to take the surgery route, and at that point, they were just hoping it wouldn't get worse,” Fry said.“Even now, she pushes through,” said longtime friend Diane King, of Fenelton. “She runs; she works out. Sitting for a long time bothers her more than anything.”Her doctors at the time figured as long as Fry was finished growing, her scoliosis wouldn't get worse.It's gotten worse, Fry said. The curve in her spine is now more than 40 degrees and has completely rotated her ribs, twisting one side of them forward and the other backward.In addition to the curvature of her spine getting worse, the pain it causes her has also intensified.“I have pain daily,” Fry said. “I have headaches all the time.”Because her spine is out of alignment, she said her muscles are working harder to keep her standing straight.“A lot of it is muscle pain,” she said. “It's an aching, throbbing, nagging headache type of pain. It's always somewhere on my body, if not in multiple places.”Fry has made a lot of visits to her chiropractor, Dr. Isaac Jones, and has her own methods of managing her condition, including wearing a heel lift in her shoe.“I've been to so many chiropractors,” she said. “They put you in alignment, keep you going. I should be going once a week, but I'm going twice a month because the co-pays aren't the greatest.”Jones, who recently moved to Shippenville from Harmony, said Fry was his patient for more than 10 years.“She was a frequent patient,” Jones said. “She was always very active. She ran marathons.”Jones said he “got her up and running for the most part for a while. But her scoliosis got progressively worse.”
Fry uses a variety of techniques to manage her pain, such as a transcutaneous electrical nerve stimulation pad, which sends pulses of electricity through her muscles to relax and deaden her pain.Fry also uses an acupressure mat that numbs the nerves in her back, as well as pain patches and pain creams.She said she also uses an inversion table that flips upside down.“I have all kinds of gadgets and stuff,” she said.Fry has decided the only way she can stop the scoliosis curve from progressing is to have surgery.Specifically, she wants to have anterior scoliosis correction surgery.“I discovered this specific surgery option myself,” Fry said. “It is not super common.”Usually, the effects of scoliosis are mitigated through fusion surgery, where an incision is made in the patient's back and the joints between the spinal vertebrae are removed to loosen the vertebrae up.The vertebrae are roughened up so that the body responds by producing new bone that eventually bridges the gaps between the vertebrae and makes them fuse together. Metal implants — rods, screws, hooks or wires — are inserted to hold the spine still while the vertebrae fuse.With anterior scoliosis correction surgery (ASC), Fry said, the procedure uses screws and a rope-like device called a tether.A surgeon places the screws on the convex side of the abnormal curvature. Then, the surgeon threads the tether along the sides of the vertebrae. Once the tether is in place, it's pulled taut, which should partially correct the spinal deformity.
Unlike the metal rods used in fusion surgery, Fry said, the tether allows the spine to be flexible.She wants the ASC surgery but her insurance company, Highmark, won't pay for the operation.Fry said she has been fighting with the insurance company since June.Fry appealed as much as possible, but when it became clear she would have to find another way, she found her solution with Dr. Sajan K. Hegde of Chennai, India. Hegde quoted her a surgery cost of $29,500, with a hospital stay of five to seven days.Fry found Hegde on a support page for individuals who have had the ASC surgery.She said the same procedure in the United States would have had a minimum cost of $150,000.The long fight with Highmark placed her life in limbo, she said.“It's holding up a lot of things in my life,” she said. “I'm a licensed counselor. I'd like to start having a private practice.”And there's a possibility that her discs between the vertebrae in her back will continue to deteriorate.That's why she is leaving March 27 for the trip to Chennai to have the ASC surgery. She will be traveling with her brother, Doug Fry, and, if her passport arrives in time, her mother, Pamela Fry.Before she goes, there will be a spaghetti dinner to raise money, for both her trip and surgery, from noon to 6 p.m. Feb. 27 at The Atrium, 1031 New Castle Road, Prospect. It will include a 50/50 raffle. Tickets will also be sold for a March 17 gun raffle.Fry's friend Diane King is organizing the dinner.“I've helped with other people's (fundraising dinners), but this is the first one I've done,” said King. “We will have takeout and dine-in dinners.Fry also has a GoFundMe page and a Facebook fundraiser page.“She's super determined,” Jones said. “We wish her the best on her outcome.”
