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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#1 | ||
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Sarah uses her chamber approximately 4 to 5 times a week, although she can go for longer periods of time without treatments. Whenever she has any kind of respiratory illness she stays out during that time. It makes her feel so good that she does not see the treatments as a burden but actually enjoys and looks forward to them. While in, she usually reads or naps.
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#2 | |||
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Jenno,
Did insurance help buy the chamber for your daughter at all? Good news to hear that it has helped your daughter so much. I always hate hearing about young people developing RSD. It is bad enough when it has to strike us adults. DebbyV |
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#3 | ||
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HI DEBBY,
NO, UNFORTUNATELY INSURANCE DID NOT PAY ANYTHING TOWARD'S SARAH'S HYPERBARICS DESPITE THE FACT THAT I APPEALED TWICE. I WAS, HOWEVER, ENCOURAGED WHEN I RECENTLY READ THE FOLLOWING: HEALTH CARE PLAN ORDERED TO PAY FOR HBO TREATMENT FOR CRPS PATIENT NM Public Regulation Commission (PRC) orders health plan to pay for Hyperbaric Oxygen Therapy to treat 11 year old’s chronic pain syndrome October 3, 2007 11-year-old Angel Sanchez triumphs over Presbyterian Health Plan (PHP) in an External Review ordered by the Public Regulation Commission (PRC). The health insurance company had refused to compensate the youngster and her family for the expense incurred by hyperbaric oxygen therapy (HBOT)-the only therapy that successfully relieved her intractable pain syndrome. Earlier this year Miss Sanchez was diagnosed with Reflex Sympathetic Dystrophy (RSD), also known as Chronic Regional Pain Syndrome (CRPS). Although Miss Sanchez had been seen by two pain specialists and her condition was confirmed by a neurologist, the health care provider PHP refused to reimburse the Sanchez family. Miss Sanchez, a 7th grade student at St. Michaels High School in Santa Fe, NM experienced a typical childhood mishap-she slipped on the floor-which led to pain that was disproportionate to the injuries incurred. It was this incident that brought on excruciating pain resulting in the diagnosis of RSD/CRPS, a relatively rare syndrome where the brain gets overwhelmed by pain that can migrate all over the body. RSD/CRPS can cause limbs to swell and muscles to waste. There is no recognized therapy that works to manage RSD/CRPS but doctors try to control RSD/CRPS in adults with large does of narcotics or by cutting sensitive nerves. There is no conventional treatment approved for children suffering from RSD/CRPS. Susan Luna-Sanchez, Miss Sanchez’s mother, scoured the Internet searching for alternatives that could provide her daughter with relief from her constant suffering. Ironically, her search led her directly to Miss Sanchez’s primary care pediatrician, Dr. Ken Stoller. In addition to being the only Defeat Autism Now! trained pediatrician in New Mexico, Dr. Stoller is also the Medical Director of the Hyperbaric Oxygen Therapy Clinic of New Mexico ( Hyperbaric Oxygen Therapy Clinic of New Mexico ). Kirtland Air-force base (377th Aerospace Medical squadron) exclusively uses the hyperbaric chamber at Dr. Stoller’s center for pilots that have been diagnosed with decompression sickness. Miss Sanchez was successfully treated at the Hyperbaric Medical Center of NM, and her CRPS symptoms have been kept in check with HBOT therapy. Luna-Sanchez stated that Presbyterian was willing to pay for any therapy but HBOT even though the HBOT therapy was successfully keeping Angel’s RSD/CRPS symptoms in check, allowing her to return to having a normal life. "As a parent, I would encourage other parents going through similar situations not to give up when running into problems with insurance company criteria. We can advocate on behalf of our children. The more parents who do this, the better chance there is of changing research and treatment practices for all children." RSD/CRPS patients have come from all over the USA to be treated with hyperbaric oxygen at he Hyperbaric Medical Center of New Mexico in Santa Fe. Most patients experience dramatic improvements in their pain levels. About Dr. Stoller Dr. Stoller is President of the International Hyperbaric Medical Association, a Fellow of the American Academy of Pediatrics, a Diplomat of the American Board of Pediatrics, a Diplomat of the American Board of Hyperbaric Medicine, and a member of the New Mexico Medical Society. He was University of California President's Undergraduate Fellow in the UCLA Medical Center's Department of Anesthesiology, and has almost two decades of clinical experience in pediatric medicine. SO, MAYBE THERE IS HOPE THAT SOMEDAY THIS WILL BE AN "APPROVED" TREATMENT FOR RSD. IT IS SO FOOLISH ON THE PART OF BOTH WORKMEN'S COMP AND INSURANCE COMPANIES TO WITHHOLD PAYMENT FOR HYPERBARICS BECAUSE IT WOULD LIKELY OFTEN PROVE TO BE THE MOST COST-EFFECTIVE TREATMENT. I DO KNOW THAT IN THE PAST YEAR (SINCE WE HAVE HAD OUR HOME CHAMBER) OUR OUT-OF-POCKET MEDICAL EXPENSES HAVE BEEN DOWN DRASTICALLY ... BAISCALLY OFFSETTING THE COST OF OUR CHAMBER. AND YES, YOU ARE RIGHT ABOUT IT BEING TERRIBLY SAD FOR ONE AS YOUNG AS SARAH TO HAVE TO DEAL WITH RSD ... BUT WE ALL KNOW THAT IT IS A TRAGEDY AT ANY AGE. I HAVE BEEN ASKED, "DON'T YOU JUST WISH IT COULD BE YOU, INSTEAD OF SARAH?", (AND OF COURSE I DO) BUT IN TRUTH I KNOW THAT I COULD NOT HAVE HANDLED IT AS BRAVELY AS SHE AND MANY OF YOU HAVE. IT TRULY BREAKS MY HEART THAT ANYONE MUST LIVE WITH THIS ILLNESS. JEANNE |
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#4 | |||
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Amen!!! I am so thankful that you are spreading the word about HBOT. As you and others may know, I have a chamber as well. With full body RSD since 1989, I have tried everything. I mean everything! HBOT is the solution for me. I continue to use my chamber with great results. Lets spread the word. I know that Vic C has been trying to get this message out for a long time. I am so thankful to hear about each and everyone who get positive results from oxygen under pressure. My hope and prayer is that one day it will be available to all that are willing to give it a good try.
Lets keep the conversation of HBOT going. I wish everyone could have seen for themselves, the change in me and my life. I am so thankful to hear that Sarah continues to do well with HBOT. All the best to all....diana |
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#5 | ||
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Member
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Hi Jeanne and Diane,
I was inquiry about the rental chamber. I was told the pressure was only 1.3 to be use at home. Can you tell me what is your chamber pressure? I have been thinking getting more HBOT. But i keep on delaying it because of the cost. I had 30x of HBOT. It helped with my pain but after a month of stopping the therapy, my pain was slowly going back up. Thanks for sharing your experience! Numb |
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#6 | ||
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Junior Member
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Please help me!
I am trying to raise money to be treated with hyperbaric oxygen therapy. I need testimonials of successful treatments even if you had to buy a chamber! Would you help me??? |
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#7 | ||
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Member
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Hi,
Have you had a chance to try hyperbarics, and did they work for you? Please feel free to use my daughter Sarah's testimonial that is part of this post. Also on this post is the story of another young girl who was able to get hyperbarics paid for thru her insurance. You could possibly reference that as well. I wish you lots of luck in your efforts!! Jeanne |
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"Thanks for this!" says: | polarisgold (02-19-2009) |
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#8 | ||
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Member
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Quote:
If there is reproducability to this, we should all be hollering about it! |
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"Thanks for this!" says: | DianaA (02-19-2009) |
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