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Stories of Hope
 

Weighing the Results: Patients and specialists share stories about Hyperbaric Oxygenation Therapy

While Hyperbaric Oxygenation Therapy (HBOT) promises relief to many individuals with Reflex Sympathetic Dystrophy (RSD) and Complex Regional Pain Syndrome (CRPS), everyone's experience with this therapy is different.

Glenn J. Shamdas, 48, who has had CRPS for seven years, tried HBOT because of a recommendation from a friend after she received a complete remission. He was not helped.

"I had a total of 20 sessions in four weeks - which is a commonly prescribed schedule. Unfortunately, in my case, no significant improvement was experienced."

Dana Marsolino, 52, who was in two bad car accidents and is still in a lot of daily pain, found no relief either. "I tried the hyperbaric chamber four times and had to quit due to my bad shoulders and neck," she says.

"I could not tolerate lying inside [the chamber] for that length of time, no matter how they adjusted the pillows."

Laura Rentsch, 45, has a somewhat complicated story. She had 20 sessions over four weeks, but endured considerable side effects.

"During the dives I would experience deep pain in my RSD leg that would subside when we got to the final depth. I would also experience vertigo frequently after the treatment."

Rentsch said that her swelling calmed down and she had better range of motion in her foot for some time, but she had also been given two Pamidronate treatments prior to the HBOT. Pamidronate helps with constant deep bone pain and she believes this drug did help her.

"Ultimately I cannot say the HBOT helped me, but I can't say that I would not recommend it to others. It may very well have helped me, but other contributing factors that lead to less swelling and better range of motion need to be considered. My treatments occurred during the summer and I generally have lower pain levels and better range of motion during warmer weather. And the Pamidronate did reduce the bone pain."

Susan Rodriguez, who has been a certified hyperbaric specialist from San Bernardino, Calif., for many years, says that she has not heard of this problem before. Vertigo is an extremely unusual side effect. She suspects it may have been triggered if a patient had an underlying vestibular problem to begin with. It may have been a result of Rentsch's reaction to the Pamidronate. It could also be the result of compression or decompression or other underlying factors.

Indeed, Rentsch had a severe reaction to the Pamidronate. It caused sudden hearing loss and extreme tinnitus - a loud roaring motor sound in her ears. Certain powerful medications, particularly those given by IV, as Pamidronate was given to Rentsch, can literally poison the ears of genetically susceptible individuals. Ear poisoning can affect one's hearing or balance, or both. In this case, it is possible that an underlying vestibular problem may have been present.

A more common side effect of HBOT is claustrophobia. For some, like Deb Brown, 60, of north central Florida, claustrophobia was too big a hurdle to overcome. One session was quite enough, she says. There were only two very small sections of clear plastic in the particular chamber she was in that she could look out of during the session.

"I dare say it felt like it had done some good," says Brown. "Perhaps had I been sedated with an extremely light sedation, I would have handled it better."

According to Allan Spiegel, M.D., Palm Harbor, Fl., the claustrophobia problem is minimal for most of his patients, because his chambers are like clear glass. Still, about 10 percent of his patients struggle with this problem, as Brown did. He gives them sedation, however, if they need it. "Mild sedation works wonders," he says.

"But one of my patients overcomes the problem by closing her eyes after she lies down on the cot, before being wheeled into the chamber. For some reason that makes a difference," he says. "And then we put some calming music on."

There are several kinds of chambers used for HBOT. Spiegel uses Sechrist chambers in his medical center. Rodriguez, however, prefers Gulf Coast chambers, which she says are somewhat larger. Patients can sit in these chambers and they will be very comfortable. These chambers are 13 feet long and five feet around.

"No one has ever become claustrophobic in our chambers because of the large size," she adds.

While the effectiveness of this therapy may vary from individual to individual, for some, it has been a Godsend.

Tanya Kee, now 33, had a knee injury in 1999, followed by surgery, which made the knee worse. She developed RSD in her leg, which put her into a wheelchair.

About three years after her original injury, Kee learned about HBOT and went through 56 sessions with success for her right lower leg and foot.

"Probably within a half dozen dives, I noticed a difference," she says. "Even my friends said that I looked amazing," she added, noting that oxygen affects so much of the body.

Kee's leg improved slowly, but steadily. "After about two months I went from being in a wheelchair for the most part, to walking and being able to lead a much better life."

Unfortunately, she had to stop therapy because she sustained a new injury to her arm at this time that caused her RSD to spread to her arm, neck, back, neck and right side. She said that HBOT increases blood flow in muscles and makes her muscles too painful.

"Prior to that, though, it was a great experience," she says. "My leg has not worsened since then. It's still painful, but I don't use my wheelchair unless we go to Disney or places where we do a lot of walking."

Elsie Eten, age 57, had suffered with RSD for nine years before she learned about HBOT. Eten, who Spiegel calls his "Poster Child," (See: Hyperbaric Oxygenation Therapy: Can it relieve your pain?) had endured years of medical procedures before she met Spiegel and began treatment.

"I was at a point in my life with the RSD and pain that I was ready to try anything, or I was ready to die, because I could not take the pain anymore.

"After the first few days I could feel the difference," she says. "I was feeling better, the pain was less, and I was taking less pain medication.

"After four weeks, I was pain free for the first time in eight or nine years. I slowly quit taking Oxycontin, Loratab, and Zanax. About two weeks later - six weeks after I began therapy - I was pain free and drug free. I could not believe it!

"I wanted to go back to nursing so badly that I think I went back too soon. As soon as I was off my medications I went back to work without getting my body back into shape and strong. After a month at work, my pain started to come back. After three months, I had to quit my job because of my pain. I had to start taking Laratab again too."

Eten says she goes for HBOT treatments every five or six months and it still helps. She is unable to work, but she is able to go out with her husband sometimes and see friends.

"Even though I am not cured of RSD, I feel like I got some of my old life back. I recommend HBOT for RSD. My doctor told me when you have chronic pain, it takes a lot of different modalities to keep the pain at a manageable level and I believe that."

Connie Waltz, director of nursing at the Robert M. Lombard Medical Center in Columbia, Pa., where Eduardo Pace is being treated (See: Beyond Pain: Some hope for healing), has treated a number of individuals with RSD.

"Absolutely, I would recommend Hyperbaric Oxygenation Therapy for RSD," she says, adding that the sooner a person starts HBOT after they have been diagnosed, the better. Patients who have had RSD for a long time are tough to treat. The two patients they had, who were newly diagnosed, had especially good results.

"One person stopped after 10 treatments, because of financial reasons," says Waltz. "She saw amazing results. She could open her hand and use it. The swelling went down. The natural pink color returned, instead of a dusky blue.

"The other person had it in his shoulder," she says. "Within 20 treatments, he had range of motion."

Hyperbaric Oxygenation Therapy appears to be one more tool in the toolbox of managing chronic pain for many individuals.

Like Spiegel and Waltz, Rodriguez is passionate about the ability of Hyperbaric Oxygenation Therapy to make a difference for patients with RSD.

"RSD can shatter your life," she says. "Mothers can't be mothers. Husbands can't support their families. Kids can't lead normal lives. And no one believes you about the pain.

"People's lives depend on this therapy," she says. "Integrated with other ongoing therapies, it holds real promise."

 

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