Hyperbaric Oxygenation Therapy: Can it Relieve Your Pain?
By Patricia McAdams
 
Hyperbaric Oxygenation Therapy (HBOT) is a new therapy for many individuals with CRPS/RSD. Interestingly, however, this therapy is not new at all. According to Allan Spiegel, MD, Palm Harbor, Florida, the field is almost 100 years old. In countless countries, there are 55 recognized clinical diagnoses that experts perceive can be helped by HBOT. The United States, however, recognizes only 14 of these diagnoses -- and RSD is not on this list.
 
Spiegel, who has been a practicing neurologist for more than 21 years, discovered HBOT seven years ago through the internet when he was searching for therapies to help a family member who had suffered a stroke. "As a neurologist, I didn't believe this would work until I saw it firsthand," he says. He has since become a certified hyperbaric clinician and is passionate about the healing potential of this therapy.

With HBOT, patients enter a small bed-size chamber where they inhale 100 percent oxygen (instead of 21 percent) at higher-than-normal atmospheric pressure. These pressures are equivalent to different depths undersea -- except that there is no water.
 
Spiegel says that HBOT supersaturates tissues that have been deprived of oxygen because of the swelling of a limb. Specifically, saturation levels of oxygen in blood and tissues increase 10 to 20 times while in the chamber. Further, HBOT has a tendency to constrict vessels by about 15 percent, which causes a decrease in swelling from the edema present in most people with RSD. "With HBOT," Spiegel says, "we are looking at long-term improvement, reduction in pain, improvement in sleep -- and reduction in depression, because pain causes depression."
 
Of the 15 patients with CRPS/RSD that Dr. Spiegel has treated, 12 have been helped by the therapy, he says. One patient, who had been a nurse at a local hospital, developed RSD involving her leg following a trauma. She had undergone about 60 or 70 nerve blocks through a pain management specialist, but these only temporarily eased her pain. When Spiegel first met her, she was on high dose narcotics and had been unable to work. "After about six weeks and 20 treatments of HBOT therapy, she was off narcotics and went back to work for the first time in nine years." Spiegel calls her his "Poster Child" for RSD because her experience was so remarkable.
 
How Does Hyperbaric Oxygenation Therapy Work?
Susan Rodriguez, a certified hyperbaric specialist from San Bernardino, California, believes that to understand how HBOT works for RSD, you need to understand the disease itself. "RSD is neurological in nature and yet it manifests itself in physical symptoms," she says. "What that means is that the disease needs to be treated with two approaches. One goal is to restore circulation, reduce inflammation or edema, and remove the swelling in affected limbs so the limbs can live. The other goal -- if you want to eliminate the disease -- is to work on the brain."
 
If you were to stub your toe, for example, the central nervous system would tell your brain that your toe hurts. This pain is rooted in a physical injury.

But sometimes trauma and inflammation mysteriously trigger a reaction from the sympathetic nervous system, which is a different part of the brain. With RSD, pain is read through sensors in the sympathetic nervous system. (The sympathetic nervous system is what is activated in phantom leg pain, for example.) "Hyperbaric Oxygenation Therapy, however, can make the switch in the brain back to the central nervous system," Rodriguez says. Under a doctor's direction, she treats both the affected limb and the brain by different atmospheric pressures when the patient is inside the chamber.
 
"Different undersea depths work on different parts of the body," she explains. "Deeper depths (up to 33 to 45 feet undersea) work more on tissue and bone, while milder hyperbarics (such as 18 to 24 feet undersea) work on the brain. Since we are working on both things, I take patients to all those levels. Almost always, the first symptom to come is the last to go. And then the symptoms are gone!"
Rodriguez learned about the effectiveness of HBOT therapy in treating RSD first hand, when her husband Patrick was diagnosed in the mid-1990s following surgery. Because she had already been working in this field, they decided to try Hyperbaric Oxygenation Therapy to treat his RSD. Not only is Patrick working today, but he has become a certified hyperbaric technician. The couple opened Rapid Recover Hyperbarics in 1998, with Donald Underwood, DO, MD, JD, serving as medical director.
 
A physician should review all aspects of a patient's medical history before starting therapy. There are a few medical conditions that may prevent an individual from receiving HBOT -- either permanently (certain lung and heart disorders) or temporarily (sinus infections, fevers).
 
"I have seen some very dramatic improvements," says Rodriguez. "In some cases we have seen improvements to the point of a remission." she says. "Nothing works for everyone, but I've seen this work for many people if they stick with it."
 
Paying for Hyberbaric Oxygenation Therapy
According to Spiegel, the Food and Drug Administration (FDA) has approved this therapy for only 14 clinical conditions, including the treatment of external diabetic ulcers and internal radiation wounds. These 14 treatment categories appear to have been arbitrarily set more than 40 years ago.
 
Without FDA approval, however, insurance companies cannot cover the cost of this treatment, nor can hospitals provide treatment, even for those who can pay. Instead, only free-standing clinics are legally permitted to treat for "off-list" conditions such as RSD. Formal clinical studies are required for this scenario to change, a cost prohibitive proposition thus far.
 
While insurance is unlikely to cover the cost of these treatments for the time being, Spiegel feels HBOT therapy is still "very, very cost effective" in the long term. Session lengths average 1-1/2 to 2 hours for individuals with CRPS/RSD, with costs around $150 to $250 per session.
 
For example, if ordinary pain management therapies like injections and narcotics don't help RSD patients, then surgical procedures may be necessary, he says. One of these is a morphine pump, which costs upwards of $20,000 just to install. "It needs to be monitored monthly by a physician and replaced every four or five years, with all the associated costs for doctor visits along the way." Most free-standing centers, however, provide HBOT for thousands of dollars less than hospital-based centers.
 
Spiegel and others are doing what they can to get the FDA and other groups to re-evaluate the current limitations on approved diagnoses to treat with HBOT. This past summer, for example, he gave a talk at the Undersea Hyperbaric Medical Society annual meeting. The talk raised considerable interest.
 
Currently, two clinical trials are underway at the National Institutes of Health involving HBOT, but neither involve people with RSD.
 
 
Beyond Pain - Some hope for healing
 
Eduardo Pace, 27, turned the key in the door to the pizza restaurant in West Windsor, N.J., where he worked as a chef, and was greeted by the scent of pine oil rising from freshly mopped floors. It was only 9 a.m. on an overcast morning in June, but already the kitchen was hot.
 
After gathering the ingredients for a fresh batch of dough, Pace put them into a giant machine to mix together. He then prepared several pizzas for early bird customers who might stop by. Soon, the pleasing aroma of the pizzas baking in the ovens filled the kitchen, so Pace turned his attention again to the dough. Now mixed, it was ready to be cut and rolled. Alone, he lifted the dough - all 80 pounds of it - placing it on the table nearby.
 
He remembers the snap in his right wrist as his ligaments ripped apart.
 
He remembers a searing pain that shot through his arm like an electric shock.
 
He remembers the doctor in the emergency room who dismissed his complaints, sending him back to work.
 
This is a story about one man's traumatic injury, the devastating health consequences, and finally, a treatment called Hyperbaric Oxygenation Therapy (HBOT) that is beginning to heal.
 
"My injury happened 15 years ago," says Pace. "I had gone to a local emergency medical center where I was examined but no X-rays were taken. The attending doctor thought I was complaining too much. He assumed I was looking for time off from work. He said nothing was wrong and sent me back to the restaurant."
 
Despite a year's delay, Pace's injury to his wrist was finally diagnosed and treated. He had an operation during which nine pins were put into his arm to reattach the ligaments. By this time, however, edema had set in, so the tissues in his hand and arm were inflamed and swollen. Soon afterwards, Reflex Sympathetic Dystrophy (RSD), which had begun spreading, was diagnosed. This little known condition that causes excruciating pain at even the slightest touch, involves the nerves, skin, muscles, bones, and blood vessels. Affecting the sympathetic nervous system, rather than the central nervous system, it is especially difficult to treat.
 
"It feels as though my arm and hand are in a bat of burning oil with a knife-driving pain simultaneous to the burning pain," says Pace. "On top of all of that, there is the feeling as if the limb was being clamped shut."
 
From this point forward, Pace had great doctors. Because his was a work related injury, however, there were considerable legal issues that prolonged the necessary care. The RSD continued to spread, affecting his legs by 1995. He tried to manage with a quad cane for a while, but eventually needed a wheelchair.
 
The years since his injury are a blur of doctors and medical procedures and medications, none of which gave Pace relief. Then one day, a doctor suggested HBOT.
 
The term, oxygenation therapy, refers to inhaling 100 percent oxygen instead of 21 percent oxygen, which is the ordinary level of oxygen in the air we breathe. The word, hyperbaric, relates to pressures higher than normal. With HBOT, patients enter a small bed-size chamber, where they inhale 100 percent oxygen at higher than normal atmospheric pressure. The therapy has a remarkable history of improving the function of many individuals.
 
According to neurologist Allan Spiegel, who treats patients with HBOT, "the saturation of blood and tissue with oxygen increases 10 to 20 times when you are in the chamber, compared with when you are not in the chamber. Essentially, you are super saturating tissues deprived of oxygen, because of the swelling of a limb."
 
With hope for some relief finally in sight, Pace searched for a medical facility that provides HBOT. Unfortunately, the hospitals closest to his home and even those in Philadelphia refused to take him because RSD is considered "off-list" of the therapies they can treat with HBOT.
 
At last, he identified the Robert M. Lombard Medical Center - a free-standing clinic in Columbia, PA, three hours from home. The staff in Columbia welcomed him as a patient. Ever grateful, Pace made reservations in a nearby motel and moved in, so he could go for daily treatments. It was 2003.
 
"In 13 years, this was the first thing that showed any effect," he says. "It took about a month, but there were very small changes that meant a lot to me. It had a dramatic impact on the edema in particular."
 
Pace says he sits in a Vickers chamber, which looks like a one-man submarine. It has a huge bubble where his head is, so he can look around and watch TV or a movie if he wants. As he is "diving" - a term used by patients as the chamber is pressurized to a different undersea atmospheric pressure -he chews gum or licks a lollipop to keep his ears from popping. Once he is at the right pressure level, his ears are fine, he says. There is no difference from being outside the chamber.
 
Sitting in the chamber is very painful, of course, because his legs are touching the bed and his arm and hand are resting in his lap. Otherwise, he has no side effects. On rare occasions, however, he has struggled a bit with claustrophobia. He just closes his eyes and visualizes himself elsewhere. It helps a great deal.
 
"When I first started coming for this therapy, my hand was swollen to 26 inches around (67 centimeters)," he says. "After months of HBOT it was 11 inches (29 centimeters). The results were phenomenal. There was not a drastic change in pain, but a little bit means a whole lot to someone in my shoes."
 
Spiegel and other therapists find that approximately 20 to 60 daily treatments can give RSD patients huge relief. Because of the delay in his treatment, however, Pace's condition had worsened so badly that he continued the therapy for about a year. He says he was doing extremely well and making lots of progress until he had a fall and had to stop treatments for some time. Depression set in and his condition regressed. He started treatments again in July 2005.
 
"I am finally on the right track once again and seeing positive signs all around. My legs have responded very well. There is almost no drainage. The edema is down considerably.
 
"I absolutely recommend this therapy to others," Pace says.
 
"It has made a dramatic difference in my life."
 
 
Weighing the Results: Patients and specialists share stories about Hyperbaric Oxygenation Therapy
by Patricia McAdams
 
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."
 
Kee is a big fan of HBOT. In fact, she runs the North Florida RSD/CRPS Mentor/Support group at http://www.RSDCare.org.
 
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."
 
 
Links:
Hyperbaric Oxygenation Therapy: Can it Relieve Your Pain?
By Patricia McAdams: http://www.rsds.org/3/research/hbot_mcadamshtm.htm