Living with Chronic Pain
People in Pain Learning from each other
Below is some of the things I have found out about HBOT Treatments and How They Have Helped So Many In Chronic Pain:
I researched this because I have heard so many stories about how this has helped even put people with RSD/CRPS into remission
HBOT Stories and Research
Patient Stories:
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."
RSD and HBOT Research
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.
Choosing a Treatment Center
Hospitals are not permitted to provide Hyperbaric Oxygenation Therapy for patients suffering with Reflex Sympathetic Dystrophy. Instead, you must select a free-standing medical clinic. A list of providers worldwide is online at:
http://www.hbotproviders.com Free-standing clinics permitted to treat brain injury and other off-list conditions are indicated by a "#" on this list.
Choose a reputable center for your treatment, where your therapists understand all the risks and take all the safety precautions necessary to avoid a problem.
A reputable center will
·•be staffed by a physician and other health care professionals certified by the Hyperbaric and Undersea Medical Society.
• require a doctor's prescription before giving therapy.
• have two or more staff members in the building at all times in the event one has an emergency.
•have strict rules about allowing nothing whatsoever in the chamber with the patient that could be combustible.
Resource:
A number of research and patient articles are posted on the following sites
Allan Spiegel, MD
Palm Harbor, Florida
National Hyperbaric Oxygen Therapy
http://rsdtherapy.com
Patrick and Susan Rodriguez, CHT, EMT, DMT
Donald Underwood, DO, MD, JD
Rapid Recovery Hyperbarics
San Bernardino, California
http://hbot4u.com
Read tories of people who have used HBOT:
Eduardo's Story
People who have RSD and have used HBOT
A link for World HBOT Providers
http://miraclemountain.homestead.com/Providers2.html
Reflex Sympathetic Dystrophyis a chronic pain disorder associated with sensitivity to light touch,swelling, skin color and temperature changes, weakness, abnormal sweating, muscle atrophy, and subsequent depression.
If you missed Discovery Health's Medical Incredible airing on April 16, 2006 about a young girl with RSD that was treated with Hyperbaric Oxygen click here to watch
Hyperbaric Oxygen Therapy has proven itself to be a very viable option to treat this disorder. Numerous articles in the medical literature have shown the reduction in pain and swelling with return of function using hyperbaric oxygen. Best of all, this is accomplished without the need for painful injections, narcotics, or surgical implants for pain management. Most people find that following the first few treatments they are able to achieve a full nights sleep for the first time in years. They then notice the decreased need for narcotics, improved thinking, with a diminished depression.The swelling of the effected arm or leg diminishes and they are able to start physical therapy with marked improvement in muscle strength. Many people have then been able to return to a happier and more productive life, frequently returning to their prior occupation.
Unfortunately, most peole who suffer from RSD/CRPS, only receive pain management .This means being prescribed various narcotics, and antidepressants. Then they start on a long and frequent schedule of stelate ganglion /sympathetic blocks.With exception of a few fortunate people who respond to these injection,this expensive therapy is repeated weekly or monthly for the rest of the patient's life .When there is failure to respond to these blocks, the patient is referred for morphine pump implants or spinal stimulators which cost $20,000 to implant and requires ongoing physician managment on a monthly basis to make the proper adjustments.The pain management specialists usually pontificate the success that is acheived with these treatments.Yet, if they are so successful, then why do patients need 50 -200 stelate ganglion blocks,and why do most spinal stimulators and morphine pumps fail to control the pain.
Hyperbaric Oxygen Therapy, which is an FDA approved therapy, is a painless treatment utilizing 100% oxygen administered under increased pressure. It is a very safe and cost effective means of treating the chronic debilitating pain of RSD and CRPS.
Call National Hyperbaric Oxygen Therapy
at (727)787-7077 today!
For further information on other medical disorders which respond to hyperbaric oxygen, go to http://www.florida-oxygen.com
The ideas and advice contained on these Web pages are based on years of experience by Dr. Allan M. Spiegel M.D. and his staff and from an extensive review of the scientific literature. However, this is definitely not intended to be a substitute for careful medical evaluation and treatment by a competent, licensed personal health care professional. Dr. Spiegel and his associates do not recommend changing any current medications or adding any new therapies without personally consulting a fully qualified physician. Dr. Spiegel and his staff specifically disclaim any liability arising directly or indirectly from information contained on these Web pages. Varying and even conflicting views are held by other segments of the medical profession. The information presented on these Web pages is intended to be educational in nature and is not intended as a basis for diagnosis or treatment. This information is current at the time of posting on the World Wide Web, and is published and distributed as a courtesy to the public.
Allan M. Spiegel M.D.
31608 US 19
Palm Harbor, FL, 34684 (727) 787-7077
(800) 554-8060
* Testimonials
*
"I was diagnosed with RSD 18 months after a crush injury to my right leg. I discovered HBOT several years ago and after one month of treatment I was virtually pain free for 6-9 month and was able to discontinue all pain medications for that time, including Oxycontin."
- Elsie E., Lake Wales, FL
*
“When I arrived here at the beginning, both of my hands were crippled. I could not unbutton my shirt, I couldn’t open bottles, I couldn’t do seatbelts, I couldn’t cut food. Now my hands are just tremendously better. I feel like it’s a virtual miracle what I can do with my hands. I can write, I can shake hands, I can do all kinds of things that I was unable to do in the beginning, and I credit Dr. Spiegel with the hyperbaric treatment. "
- Arthur L, Asheville, N.C.
*
"I have had RSD for over 20 years. It had gone undiagnosed for a long, long time. I have has a lot of pain, cramping, swelling. I had swelling in my arms, my chest, and my left side. I had a lot of cramping in the feet with feet turned in and don’t want to come out. I have had fasiculations in my legs, night sweats and day sweats from my nerves. When I was diagnosed a year and a half ago, I went through a myriad of medications and nerve blocks. I moved down to Florida and had upwards to 50 nerve blocks in one week. I went back on heavy medication, doing physical therapy, water therapy, but still it continued pain. They did work somewhat for me. I found that mediation was much too much for me to handle. We heard of hyperbarics and came down here and I have found that the swelling that I had has gone down significantly. My pain level has gone down. I wasn’t cooking. I wasn’t lifting things. I am actually making tea and soup now. I am doing a few more things. The swelling has come down. The fasiculations in the legs has come down. I wasn’t sleeping at all, maybe 2 to 2-1/2 hours at night, and now I’m up to 6-1/2 to 7 hours and that is really very significant form me. I see definite progressive improvement with no drugs and no shots."
- Linda P., Westfield, MA
Here is the Florida link Denee, this is the one that seems to be the cheapest at this point in my research!!!
Below is info on a clinic for the chamber in Florida, the price is much better
Hey Kris,
It just dawned on me that there is a clinic in Jacksonville FL which offers 1 hour HBOT sessions for $50.00. That's much less than other clinics which usually charge $175.00.
If you are interested, here is the link:
http://www.oxygenrehab.com/
Hey Kris,
This is the information on the hyperbaric chamber we bought:
http://www.performance-hyperbarics.com/?crtag=cr
We had to take a loan out against my retirement to purchase it ( cost = $15,900 ).
There are somewhat cheaper options.
Oxyhealth is the other major manufacturer of mild hyperbaric chambers. They have a model ( Solace 210 ) which sells new for $10,500. It is much smaller than our chamber and cannot handle as much pressure ( 4 psi max ).
http://www.oxyhealth.com/
Oxygen and pressure are everything when it comes to treatment of RSD with HBOT. I won't get into all the details, but, there's a law of science (Boyles Law) which is at work when you administer oxygen under pressure. Basically, your blood can carry an exponentially higher amount of oxgen when your body is under pressure ( up to 15 times more depending on the pressure). The more pressure, the more oxygen your blood can transport. RSD occurs when the sympathetic nervous system overreacts to an injury and constricts blood flow to the effected limb causing hypoxia ( lack of oxygen). HBOT replenishes oxygen in the effected limb. Obviously, the more oxygen the better up to a certain point. With HBOT, you can actually get too much oxygen ( oxygen toxicity ), however, you must be under much greater pressure than these chamberrs are capable of for this situaution to occur ( over 14.6 psi or greater ).
One other option is EBAY. There is a Solace 210 up for auction there right now. It appears to be in mint condition. The current bid is $4,995 with 2 days left to go.
I hope you find a solution which allows you to do HBOT. It's the only treatment I know of that addresses the main problem with RSD ( lack of oxygen ).
Please stay in touch.
Hi Kris, I just spent 2 months in California so that my 15 y/o
daughter could get HBOT. We drove from Seattle. When we left she was
constantly at a pain level between 8.5 and 10. Now she is down to a
2. She was in a wheelchair when we got there, she is now walking with
a cane or walker because her legs are weak from not walking. She has
had RSD for 10 months. It started in her right foot and spread to her
left foot in April.
Her doctor wanted her to get the spinal column stimulator implant but
we decided to opt for something non-invasive first. I personally think
the HBOT is amazing. I have seen first hand how it can cure autism,
help stroke patients and help in many other conditions. The website
for the place we went is www.hbot4u.com a place that lists HBOT
providers is www.hbotproviders.com
Hope that helps!
RE:: The link to the following has a lot more good info on RSD
http://www.cigna.com/customer_care/healthcare_professional/coverage_positions/medical/mm_0438_coveragepositioncriteria_reflex_sympathetic_dystrophy_treatment.pdf
Hyperbaric oxygen (HBO): HBO has been proposed as a treatment for the pain associated with CRPS. Kiralp et al. (2004) conducted a double-blind, randomized, placebo-controlled study to assess the effectiveness of HBO for treating patients with CRPS. The study included 71 patients. They were allocated alternately to receive HBO therapy or normal air, receiving fifteen 90-minute therapy sessions of either HBO or normal air. The time period between the diagnosis and the trauma was approximately 1.5 months, and the patient had not yet received any treatment for CRPS. Pain was evaluated using a visual analogue scale (VAS). Range of motion evaluation included goniometric assessment of wrist extension and wrist flexion. Edema was assessed by measuring the wrist circumference. The VAS score indicated that pain decreased starting from the first day until day 45. An increase in wrist flexion was observed with the HBO group after 15 therapy sessions. A decrease in wrist circumference in the HBO group was noted between end of treatment and day 45. There was a statistically significant difference for all variables except wrist extension. It does not appear that there was long-term follow-up of this group. This may be considered a preliminary study regarding HBO treatment for CRPS.
I researched this because I have heard so many stories about how this has helped even put people with RSD/CRPS into remission
HBOT Stories and Research
Patient Stories:
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."
RSD and HBOT Research
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.
Choosing a Treatment Center
Hospitals are not permitted to provide Hyperbaric Oxygenation Therapy for patients suffering with Reflex Sympathetic Dystrophy. Instead, you must select a free-standing medical clinic. A list of providers worldwide is online at:
http://www.hbotproviders.com Free-standing clinics permitted to treat brain injury and other off-list conditions are indicated by a "#" on this list.
Choose a reputable center for your treatment, where your therapists understand all the risks and take all the safety precautions necessary to avoid a problem.
A reputable center will
·•be staffed by a physician and other health care professionals certified by the Hyperbaric and Undersea Medical Society.
• require a doctor's prescription before giving therapy.
• have two or more staff members in the building at all times in the event one has an emergency.
•have strict rules about allowing nothing whatsoever in the chamber with the patient that could be combustible.
Resource:
A number of research and patient articles are posted on the following sites
Allan Spiegel, MD
Palm Harbor, Florida
National Hyperbaric Oxygen Therapy
http://rsdtherapy.com
Patrick and Susan Rodriguez, CHT, EMT, DMT
Donald Underwood, DO, MD, JD
Rapid Recovery Hyperbarics
San Bernardino, California
http://hbot4u.com
Read tories of people who have used HBOT:
Eduardo's Story
People who have RSD and have used HBOT
A link for World HBOT Providers
http://miraclemountain.homestead.com/Providers2.html
Reflex Sympathetic Dystrophyis a chronic pain disorder associated with sensitivity to light touch,swelling, skin color and temperature changes, weakness, abnormal sweating, muscle atrophy, and subsequent depression.
If you missed Discovery Health's Medical Incredible airing on April 16, 2006 about a young girl with RSD that was treated with Hyperbaric Oxygen click here to watch
Hyperbaric Oxygen Therapy has proven itself to be a very viable option to treat this disorder. Numerous articles in the medical literature have shown the reduction in pain and swelling with return of function using hyperbaric oxygen. Best of all, this is accomplished without the need for painful injections, narcotics, or surgical implants for pain management. Most people find that following the first few treatments they are able to achieve a full nights sleep for the first time in years. They then notice the decreased need for narcotics, improved thinking, with a diminished depression.The swelling of the effected arm or leg diminishes and they are able to start physical therapy with marked improvement in muscle strength. Many people have then been able to return to a happier and more productive life, frequently returning to their prior occupation.
Unfortunately, most peole who suffer from RSD/CRPS, only receive pain management .This means being prescribed various narcotics, and antidepressants. Then they start on a long and frequent schedule of stelate ganglion /sympathetic blocks.With exception of a few fortunate people who respond to these injection,this expensive therapy is repeated weekly or monthly for the rest of the patient's life .When there is failure to respond to these blocks, the patient is referred for morphine pump implants or spinal stimulators which cost $20,000 to implant and requires ongoing physician managment on a monthly basis to make the proper adjustments.The pain management specialists usually pontificate the success that is acheived with these treatments.Yet, if they are so successful, then why do patients need 50 -200 stelate ganglion blocks,and why do most spinal stimulators and morphine pumps fail to control the pain.
Hyperbaric Oxygen Therapy, which is an FDA approved therapy, is a painless treatment utilizing 100% oxygen administered under increased pressure. It is a very safe and cost effective means of treating the chronic debilitating pain of RSD and CRPS.
Call National Hyperbaric Oxygen Therapy
at (727)787-7077 today!
For further information on other medical disorders which respond to hyperbaric oxygen, go to http://www.florida-oxygen.com
The ideas and advice contained on these Web pages are based on years of experience by Dr. Allan M. Spiegel M.D. and his staff and from an extensive review of the scientific literature. However, this is definitely not intended to be a substitute for careful medical evaluation and treatment by a competent, licensed personal health care professional. Dr. Spiegel and his associates do not recommend changing any current medications or adding any new therapies without personally consulting a fully qualified physician. Dr. Spiegel and his staff specifically disclaim any liability arising directly or indirectly from information contained on these Web pages. Varying and even conflicting views are held by other segments of the medical profession. The information presented on these Web pages is intended to be educational in nature and is not intended as a basis for diagnosis or treatment. This information is current at the time of posting on the World Wide Web, and is published and distributed as a courtesy to the public.
Allan M. Spiegel M.D.
31608 US 19
Palm Harbor, FL, 34684 (727) 787-7077
(800) 554-8060
* Testimonials
*
"I was diagnosed with RSD 18 months after a crush injury to my right leg. I discovered HBOT several years ago and after one month of treatment I was virtually pain free for 6-9 month and was able to discontinue all pain medications for that time, including Oxycontin."
- Elsie E., Lake Wales, FL
*
“When I arrived here at the beginning, both of my hands were crippled. I could not unbutton my shirt, I couldn’t open bottles, I couldn’t do seatbelts, I couldn’t cut food. Now my hands are just tremendously better. I feel like it’s a virtual miracle what I can do with my hands. I can write, I can shake hands, I can do all kinds of things that I was unable to do in the beginning, and I credit Dr. Spiegel with the hyperbaric treatment. "
- Arthur L, Asheville, N.C.
*
"I have had RSD for over 20 years. It had gone undiagnosed for a long, long time. I have has a lot of pain, cramping, swelling. I had swelling in my arms, my chest, and my left side. I had a lot of cramping in the feet with feet turned in and don’t want to come out. I have had fasiculations in my legs, night sweats and day sweats from my nerves. When I was diagnosed a year and a half ago, I went through a myriad of medications and nerve blocks. I moved down to Florida and had upwards to 50 nerve blocks in one week. I went back on heavy medication, doing physical therapy, water therapy, but still it continued pain. They did work somewhat for me. I found that mediation was much too much for me to handle. We heard of hyperbarics and came down here and I have found that the swelling that I had has gone down significantly. My pain level has gone down. I wasn’t cooking. I wasn’t lifting things. I am actually making tea and soup now. I am doing a few more things. The swelling has come down. The fasiculations in the legs has come down. I wasn’t sleeping at all, maybe 2 to 2-1/2 hours at night, and now I’m up to 6-1/2 to 7 hours and that is really very significant form me. I see definite progressive improvement with no drugs and no shots."
- Linda P., Westfield, MA
Here is the Florida link Denee, this is the one that seems to be the cheapest at this point in my research!!!
Below is info on a clinic for the chamber in Florida, the price is much better
Hey Kris,
It just dawned on me that there is a clinic in Jacksonville FL which offers 1 hour HBOT sessions for $50.00. That's much less than other clinics which usually charge $175.00.
If you are interested, here is the link:
http://www.oxygenrehab.com/
Hey Kris,
This is the information on the hyperbaric chamber we bought:
http://www.performance-hyperbarics.com/?crtag=cr
We had to take a loan out against my retirement to purchase it ( cost = $15,900 ).
There are somewhat cheaper options.
Oxyhealth is the other major manufacturer of mild hyperbaric chambers. They have a model ( Solace 210 ) which sells new for $10,500. It is much smaller than our chamber and cannot handle as much pressure ( 4 psi max ).
http://www.oxyhealth.com/
Oxygen and pressure are everything when it comes to treatment of RSD with HBOT. I won't get into all the details, but, there's a law of science (Boyles Law) which is at work when you administer oxygen under pressure. Basically, your blood can carry an exponentially higher amount of oxgen when your body is under pressure ( up to 15 times more depending on the pressure). The more pressure, the more oxygen your blood can transport. RSD occurs when the sympathetic nervous system overreacts to an injury and constricts blood flow to the effected limb causing hypoxia ( lack of oxygen). HBOT replenishes oxygen in the effected limb. Obviously, the more oxygen the better up to a certain point. With HBOT, you can actually get too much oxygen ( oxygen toxicity ), however, you must be under much greater pressure than these chamberrs are capable of for this situaution to occur ( over 14.6 psi or greater ).
One other option is EBAY. There is a Solace 210 up for auction there right now. It appears to be in mint condition. The current bid is $4,995 with 2 days left to go.
I hope you find a solution which allows you to do HBOT. It's the only treatment I know of that addresses the main problem with RSD ( lack of oxygen ).
Please stay in touch.
Hi Kris, I just spent 2 months in California so that my 15 y/o
daughter could get HBOT. We drove from Seattle. When we left she was
constantly at a pain level between 8.5 and 10. Now she is down to a
2. She was in a wheelchair when we got there, she is now walking with
a cane or walker because her legs are weak from not walking. She has
had RSD for 10 months. It started in her right foot and spread to her
left foot in April.
Her doctor wanted her to get the spinal column stimulator implant but
we decided to opt for something non-invasive first. I personally think
the HBOT is amazing. I have seen first hand how it can cure autism,
help stroke patients and help in many other conditions. The website
for the place we went is www.hbot4u.com a place that lists HBOT
providers is www.hbotproviders.com
Hope that helps!
RE:: The link to the following has a lot more good info on RSD
http://www.cigna.com/customer_care/healthcare_professional/coverage_positions/medical/mm_0438_coveragepositioncriteria_reflex_sympathetic_dystrophy_treatment.pdf
Hyperbaric oxygen (HBO): HBO has been proposed as a treatment for the pain associated with CRPS. Kiralp et al. (2004) conducted a double-blind, randomized, placebo-controlled study to assess the effectiveness of HBO for treating patients with CRPS. The study included 71 patients. They were allocated alternately to receive HBO therapy or normal air, receiving fifteen 90-minute therapy sessions of either HBO or normal air. The time period between the diagnosis and the trauma was approximately 1.5 months, and the patient had not yet received any treatment for CRPS. Pain was evaluated using a visual analogue scale (VAS). Range of motion evaluation included goniometric assessment of wrist extension and wrist flexion. Edema was assessed by measuring the wrist circumference. The VAS score indicated that pain decreased starting from the first day until day 45. An increase in wrist flexion was observed with the HBO group after 15 therapy sessions. A decrease in wrist circumference in the HBO group was noted between end of treatment and day 45. There was a statistically significant difference for all variables except wrist extension. It does not appear that there was long-term follow-up of this group. This may be considered a preliminary study regarding HBO treatment for CRPS.
