Bettsville teen faces pain with no gain

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Ashley_Schwochow, originally uploaded by rsdscrpsnews.

Bettsville teen faces pain with no gain

By MaryAnn Kromer,

When Ashley Schwochow fractured her right ankle during basketball season in 2004, she never expected the injury to change her life; however, instead of healing in the usual way, the ankle became more and more painful.

At the time, Ashley was a freshman at Bettsville High School. Since then, she has learned about the rare disease she has developed — reflex sympathetic dystrophy syndrome, also known as complex regional pain syndrome or RSD/CRP. The progressive, neurological disease produces chronic burning pain that may be triggered by the slightest touch or movement.

“It’s a reflex disease, and usually, it doesn’t spread, but there’s an 80-percent chance it’s going to go full-body. Mine is half-body. … I have no mobility on the whole right side,” Ashley said.

Although Ashley told her doctor about the burning sensation when he removed the cast from her ankle, he said the healing process takes time and advised her to be patient. He also implied she might be exaggerating her discomfort to miss more school.

“I came back a couple weeks later, still on my crutches. I wasn’t able to put pressure on it. He took an X-ray. He was twisting it and I was screaming,” Ashley recalled. “He said, ‘There’s no break, therefore, I think it’s still sprained — or you’re making it up. I guess I can send you to Toledo.’”

Larry Schwochow, Ashley’s grandfather, said the doctor’s response was typical. In researching RSD, Larry and the rest of the family have learned the pain it causes is more serious than what is normal for an injury. RSD typically follows a fracture, wound, infection or surgery. The disorder can be traced to the Civil War.

“They originally called it ‘causalgia.’ When soldiers the soldiers would get injured, the injury didn’t match the wound. the wound would heal and they’d still have pain,” Larry said.

In Toledo, doctors took more X-rays and sent her to a clinic for injections. They told her a series of six epidurals ought to alleviate her pain. She believes they knew what she had but they didn’t mention RSD or CRP. Ann said Ashley’s symptoms did subside for about a year. She had a check-up in spring of 2005.

“They said, ‘You can go back to your regular activities. You can play volleyball and basketball. Of course, I did,” Ashley said. She twisted the ankle again in volleyball and the pain spread to her knee.

A specialist Ashley saw in Fremont wanted her to return to Toledo. The Fremont physician used the term RSD, which Ashley and her mother had not heard before; yet there it was in her records.

“Me and my mom looked at each other. … We were shocked. We didn’t know what it was. He said he wanted me to go back up and get more epidurals. I said, ‘I want to know what this is,’” Ashley said.

“She had to grow up fast,” Ann Schwochow said.

“From this, I’ve become very strong and they treat me as an adult. … I’ve had to deal with a lot of stress that most teenagers don’t have to worry about till they’re in their 30s,” Ashley said.

After an extended stint on crutches, Ashley’s arm gave out. An EMG showed a trapped nerve that may need surgery. Her parents obtained a wheelchair and moved her bedroom to the first floor. Ashley has learned to write and eat with her left hand, but she cannot bathe or dress herself.

Even with a diagnosis, the pain has been difficult to treat. All together, Ashley estimated having about 14 lumbar blocks over two years. She developed scar tissue in her back from the numerous injections that had provided only temporary relief. Also, the epidurals may have expanded the RSD into Ashley’s hip and elbow.

The next stop was rehabilitation at the Cleveland Clinic. The doctors spent two hours examining Ashley and confirmed a serious case of chronic RSD. They suggested a trial of electrical stimulation to block the pain. Electrodes were implanted in Ashley’s left shoulder blade and attached to an electrical device. She could adjust the current to the level she could tolerate.

After a few days, the inflamed tissue was irritated further by the vibration of the stimulator.

Instead of blocking the pain, the treatment worsened it. The doctors tried a different technique to administer epidurals, but even a large dose of anesthesia did little to numb the pain. Ashley said it was excruciating.

“They did a port and tried some heavy-duty medication in the lower part of her spine, but she didn’t respond to them,” Ann explained. “They can’t find anything to knock her out.”

The port was removed after a short time, and Ashley tried desensitization therapy. She said she was able to tolerate a cotton ball or tissue touching her right hand, and she even progressed to folding laundry.

Next, the therapist placed a pillow beneath Ashley’s right foot and instructed her to let her foot rest on the pillow. When Ashley hesitated, the therapist suggested touching her foot down as she was folding the towel. Ashley said the two actions together sent her into unconsciousness and convulsions. She was transported to the emergency room for oxygen.

Since that episode, the teen has not had such severe reactions, but she and her parents said they fear the RSD will move on to the left side of the body. If that happens, Ashley could lose the limited mobility she still has. Since the initial injury, RSD has migrated all the way to Ashley’s jaw. Although she can bend her right elbow and move her foot slightly, that side of her body remains hypersensitive.

Ashley now is being treated by Dr. William Bauer, a neurologist in Bellevue. Bauer has done several years of research on RSD. At Bauer’s suggestion, Ashley has begun a special diet and hyperbaric oxygen treatment, or HBOT.

“It’s not just for RSD. They use it for diabetics and MS (multiple sclerosis),” Ann said.

Patients are placed in a pressurized chamber. Oxygen is forced into the tissues to push out toxins and heal the nerve endings from the outside. A helmet maintains regular pressure on Ashley’s head. She travels to a facility in Wauseon for the therapy.

“It’s not a hospital. It’s a place called ‘Sarah’s Garden.’ They have a hyperbaric oxygen chamber,” said Larry. “They’re the closest ones in the area that have the chamber. We talked to some people that have had some success with it, so we’re going to give it a go.”

The family said it is hopeful because the HBOTs have enabled another RSD teen they know to return to school. Rides in the car are uncomfortable for Ashley, but she has been staying at a place called Jackson House that does not charge for lodging.

Through a phone call Sunday, Ann gave an update on Ashley’s progress. After 20 treatments, Ashley has regained some movement in her right hand. Her doctors say they should know more in another week or two. If the results are positive, they are to give Ashley a break for two to four weeks before starting her on another series of 40 treatments.

In addition, Ashley takes 12 prescription medications twice a day and wears a patch that dispenses fentanyl, a drug usually given to chemotherapy patients. Ashley has been told her pain levels are “off the charts.” The medications and inactivity also have caused other difficulties for the teen.

“The doctor said if they can’t revive me now, there’s no way I’m going to be better. They said even after I’m able to limp, I’ll still have a couple years of physical therapy, just to get back (in shape),” Ashley said. “I’ve gained a lot of weight. I used to be really athletic.”

The loss of independence also has been difficult. Ashley had only been driving for a few months when she had to give that up. She had been volunteering at Fremont Memorial Hospital in hopes of getting a job there. Instead, she has been disabled for nine months.

“I wanted to be a nurse, but there’s no way,” Ashley said.

She said her mental skills also have deteriorated. College-level courses may be too difficult. Right now, Ashley is focused on finishing her high school subjects. Although she has missed a lot of school, she has been able to do course work on the computer.

“That’s something that just happened because of this,” Larry said. “The school got with Sandusky County Learning Center and set up this online learning program through the Sandusky County Education Association.”

He said school system officials were able to get the program online so Ashley could access it from their home computer. Now she can stay in touch with her teachers by e-mail. They also stop in to meet with her from time to time. Her mother said it has worked out very well.

“She needed a tutor and she wanted her teachers from school to do it … (The computer) makes it easier because we don’t know when she’s going to be up or down. We couldn’t really give them a time. That way, when she’s feeling better, she can go on the computer and do her work,” Ann said.

Even so, home-schooling has its difficulties. The former honor-roll student has not been able to keep up with her classmates. Last year, as a junior,

Ashley was taking two science classes, history and math. She was able to complete the math class with frequent visits from her teachers, but she still is trying to finish the science courses.

“It just feels like my life was ripped away. I’m only 17. I’ve had to do a lot of stuff that most people never have to deal with,” Ashley said.

If anything positive has come out of Ashley’s ordeal, she said she believes it is a greater emphasis on safety at her school, not just for athletes, but for everyone. Also, she said many Bettsville students have learned about the disease and become more aware of it. Ashley said has taken phone calls from people asking about her symptoms and where to go for treatment. She tells them as much as she can to help.

“It affects about 200,000 people in the United States,” Larry said.

“In the beginning, we did so much research … some doctors don’t even know what it is,” Ashley said. “It does a lot of damage, physically and emotionally.”

At times, she said she wondered if the pain really was in her head, as the doctors implied. Meditation, relaxation techniques and mental imaging has given Ashley some relief. She said fear of the intense pain makes it difficult to sleep or do anything that might trigger it. She has received physical therapy at St. Francis Health Care Centre in Green Springs.

The research says RSD is rare in teens and more common in women than in men. An increase in hair and nail growth in the affected limbs is a trademark of RSD. The skin becomes tender, red and hot to the touch, as if it were burning from within. Ann gave up her own employment and income to care for Ashley.

“Dr. Bauer has had patients for 10 or 12 years, and she’s the worst one that he’s seen so far,” said Stephen Schwochow, Ashley’s father.

The HBOT is costly, and the Schwochows said Medicaid may not cover it. The family has received some assistance from their church, St. John Lutheran in Fremont. They also have planned a spaghetti dinner for Oct. 1.

“The community and friends have been very responsive. A lot of people have donated door prizes and meals. The support system is really tremendous,” Larry said.

“We set up an account for her at the bank, and there have been a lot of 10 and $20 deposits,” Steve added.

Larry and Steve also have made more than 40 collection cans to place at locations in Fremont, Fostoria, Findlay, Tiffin and Bettsville. The family is to use the funds to pay for transportation, co-pays on medications and other items for Ashley’s care. Ann said friends and family are preparing the spaghetti. Ashley has been surprised by the concern people have shown for her.

“In a way, I’m a celebrity, in an un-fun kind of way,” Ashley said.

“She treasures every day,” Ann said. “She realizes she has taken some things for granted.”

“Things like walking and writing her name,” Steve said.

Ashley said she wonders whether things could have been different if she had been told the name and symptoms of her ailment when she was first diagnosed. If she had known to curtail her activities instead of resuming them, maybe the RSD would not have become so severe.

Going back is not an option now. Ashley must be a spectator in the wheelchair that once belonged to her great-grandmother, a resident in a Fremont nursing facility. The teen said she misses the frequent visits they once had, but they can still talk on the phone.

“That’s the only thing I’ve got left,” Ashley said.

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