THE FOLLOWING IS OUR TESTIMONIAL THAT RECENTLY APPEARED IN A PUBLICATION OF THE INTERNATIONAL HYPERBARICS ASSOCIATION. WE SHARE IT IN HOPES THAT IT MAY HELP OTHERS:

In January 2005, our then 13-year-old daughter, Sarah, sprained her ankle in a dance class and was diagnosed with Reflex Sympathetic Dystrophy (RSD). RSD is a chronic, life-changing, extremely painful illness for which adequate treatment is often impossible to find. Many afflicted with RSD become disabled, unable to work or go to school, with only minimal relief found with even the strongest medications.

How could something as common as a sprained ankle result in such devastating complications? It is suspected that a short circuit develops in the spinal cord that sends pain signals to the neurovascular nerves that control blood flow through the blood vessels. The blood vessels constrict, decreasing blood flow and resulting in a lack of oxygen to the skin, muscles, and bones. This lack of oxygen and subsequent acid waste buildup leads to the intense pain and other serious complications. Sadly there is no cure for RSD; and it is known to spread, even to the point of becoming full body.

Over an 18-month period Sarah was hospitalized twice for weeklong epidurals, received several nerve blocks, took way too many medications, traveled across country to participate in an intense physical therapy program, and received numerous other complimentary treatments. She was under the care of some of the best doctors in the country, and yet nothing had stopped her pain.

Desperate to find relief for Sarah, we spent hours online searching for information. One evening we ran across a Discovery Health Channel broadcast about a young girl from Europe who had been bedridden with RSD for over four years. In her family’s quest for answers, they discovered that hyperbaric oxygen treatments (hbot) were key to their daughter’s recovery. Having been on so many emotional roller coasters of hope followed by disappointment, we were apprehensive to become too excited.

After further research, we were encouraged and felt compelled to give hyperbarics a shot. Plans were quickly put in place for an extended stay away from home so that Sarah could receive treatments at a freestanding clinic. After the first treatment Sarah thought that she might have felt some relief; and after half a dozen, it was apparent that we were on the right track. Upon completing 22 treatments at 2.5 ATA, Sarah was totally pain free but continued on to complete the 40-treatment protocol.

Sarah was the clinic’s first RSD patient so we did not know what to expect when hyperberics were discontinued. What we found was that Sarah’s pain would resurface every 6 to 8 weeks. We would then pack up and again travel five hours from home so that Sarah could receive boost treatments. Each time it took just three to stop the pain.

After many months of this routine, we began to check into other options. This led us to look at “mild” hbot chambers; but we couldn’t find any information indicating that these could address the pain. In our search we talked with a wonderful couple, she a doctor and he a diver and hyperbarics tech. They graciously invited us to come stay with them to try out their mild chamber. Sarah was in constant pain by the time we arrived, but she again found relief with only 3 treatments. Sarah is now the very proud and thankful owner of her very own chamber. She continues to have a few lingering signs of her RSD, having two pain flares in the past eight months. Both were triggered by infections; but for the first time in 3years, we now have the means to help her.

Despite the many bumps in the road and the months of unending pain, Sarah has emerged a remarkable, happy, bright young woman. She is back in school and carrying a full load, recently received her driver’s license, will soon be attending her first prom … really just out enjoying many everyday teen activities. We share Sarah’s hyperbarics success story because it was only through learning from the experience of another that we finally found the help that she so desperately needed. Sadly the logistics of obtaining hbot, along with the cost, often make it a prohibitive option. It is heartbreaking and a tragedy that endless suffering continues when this remarkable treatment is available and has the potential to do so much for so many.

JEANNE

I am wondering, does Sarah use the chamber every day now?

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.

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

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

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

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

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???

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

The missing point of all this, despite the issue that it is not reimbursable insurance-wise and most CERTAINLY will be an absolute exclusion with Obama care, is that is totally noninvasive!!!

If there is reproducability to this, we should all be hollering about it!