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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Old 03-24-2008, 05:25 PM #1
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Ada,
I am so glad that you are off the meds, I know they have their place in treatment, but side effects can be brutal. I do hope you are fairing well.

I just want to clear up something with everyone. I am in NO way advocating that everyone should have HBO Chamber in their home. In fact, I think that there are many risks involved. Accidents can be deadly. HBO treatment, I feel should be rendered by a doctor or a certified tech. My son is an EMT and a rescue diver like myself. Although, it is often said that side effects are rare, I think much research still needs to be conducted, for the new applications that HBOT is being used for.

To place a chamber in the home requires much careful planning and knowledge. Precautions for fire, loss of power, grounding rods, special flooring, no carpet, (OXYGEN=FIRE POTENTIAL). no oil products in the room, and the lists goes on. I understand that desperate times require desperate actions, but for sure the potential for a disaster is real.

Anyone considering buying a chamber, should educate themselves to the fullest and get a certified tech to run the chamber. Also, if there is only the patient and the chamber attendant, you should call somone close that knows how to run the chamber as well, and give them your down time and a call when you are finished so they know you are safe. If they don't receive a call they can alert 911 and get to your aid if there is a problem. You also should inform the nearest fire department about the use of oxygen.
I know this sounds overboard, but in fact, I have left out all the medical scenerios that are possible ie: a colapsed lung, seizure, blood sugar problems, and the list goes on.

I wish for all, the best pain free days possible. I just wanted to clarify some of what is involved in owning a HBO chamber. There is so little space to give fully, and clearly an explanation of all considerations.

It took me years, of research, diving instruction (with a partner) and planning to get to the point where I would put a chamber in my house, (within its own room), never mind ever being comfortable with it. I also have two fire fighter friends close, that we trained for an emergency. Overboard, you might say so, but definately precautious.

Well, I could go on forever, so I better stop. All the best to all of you.
Diana
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Old 03-24-2008, 05:42 PM #2
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Numb,
To answer your question about my pain levels, I am able to keep them at a minimum with a series of dives and a few maintenance dives. A duwer( do-er) of oxygen cost about $150.00 and burps off into the atmosphere at about 1%per day. So when you have Oxygen, you use it. The amount I paid, I will tell you privately, as I said before, more than most would want to afford. Drop me an email. I believe it is on my profile. I'll tell you this, more than a brand new Cadillac.
All the best..Diana
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Old 03-24-2008, 10:46 PM #3
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Default Hi Diana

It's been a long time since we talked. I am thrilled to know that you are doing well.

I'm doing ok. The back surgery I had in 2005 complicated my RSD situation.

Go for it girl!! Pam
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Old 03-29-2008, 06:43 AM #4
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Default Thank you so much for Sharing I have just one question

Diana I can not thank you enough for sharing all of this - so so thrilled for you that you are near to pain free- it is just so thrilling it is possible.
Diana- I have had a very diffucult time getting a script for this here in florida. the ones attached to hospitals cant take you as RSD is not approved on their list. The ones that are not attached to hospitals do not take insurance.
But I would pay anything I could if I thought it was safe. I guess I have two questions, are the independent ones safe? And may I ask why you had to begin in Canada? I didnt know if you lived there or had to travel there for treatment? Thank you again so very much ! Sincerely, CZ
Ps I have had the coma treatment, which was very sucessful however did not last.my full body rsd returned.

Last edited by CZZ74; 03-29-2008 at 06:45 AM. Reason: additional information
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Old 04-02-2008, 10:31 AM #5
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Quote:
Originally Posted by CZZ74 View Post
Diana I can not thank you enough for sharing all of this - so so thrilled for you that you are near to pain free- it is just so thrilling it is possible.
Diana- I have had a very diffucult time getting a script for this here in florida. the ones attached to hospitals cant take you as RSD is not approved on their list. The ones that are not attached to hospitals do not take insurance.
But I would pay anything I could if I thought it was safe. I guess I have two questions, are the independent ones safe? And may I ask why you had to begin in Canada? I didnt know if you lived there or had to travel there for treatment? Thank you again so very much ! Sincerely, CZ
Ps I have had the coma treatment, which was very sucessful however did not last.my full body rsd returned.
CZ,
I did my first HBOT in Canada, for several reasons. One, It was less expensive than the US. You stay in a facility, with access to a kitchen, fix your own meals, and pretty much take care of yourself. You can take a care giver with you. This was cheaper than treatment in the US, plus, hotels and food. Second, the owner has a daughter who had RSD, and if I remember correctly Cerbal Palsy, he is also a scuba diver and pilot, so I felt comfortable that he knew what he was doing. Thirdly, it did not require a prescription, but I paid out of pocket. I can not say enough about this place. They are amazing, they treat children from all over the world, with Cerbal Palsy, stroke victims, MS patients and you get a first hand view of what HBOT treatment can do for people. I also got to watch how physically challenged children and their families live each day counting every little improvement they see as a most amazing blessing. I think there are probably a lot of fine HBOT centers in the US, and I believe they have doctors on sight to write the prescriptions for treatment, after an examination. Will insurance pay for it with RSD as a diagnosis, probably not.
Just to purchase oxygen I have a prescription for
" Physically fit Hyperbaric Oxygen Therapy " (experimental) That is how the prescription reads. It has taken years for me to get to this point. I had been diagnosed with 4 extremity RSD since 1989. I feel that if I had been given HBOT sooner I may have had faster, better results. I guess I'll never really know. I'm just happy to be where I am at this point. I hope I have answered some of your questions. Please feel free to ask again, if I missed anything or something new comes up, I do wish you the best. Diana
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Old 04-03-2008, 11:43 AM #6
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Hi Diana,
Thanks so much for sharing your hyperbarics/rsd history. Like you, my 16-year-old daughter benefited immensely from hyperbarics. Over the course of many months she received 75 high pressure treatments in a clinic setting. She was painfree after her 22nd treatment; but what we found was that within 6 to 8 weeks of stopping treatments, her pain would return. We would then have to pack up and travel five hours from home so that she could receive boost treatments.

Last August we purchased a "mild" chamber for our home, and it has done a great job of maintaining her. It is unfortunate that the logistics of receiving treatments can be complicated and that the cost is often prohibitive, as I know hyperbarics could help so many people. Keep spreading your story ... it is a very important, life-changing message!!
Jeanne
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Old 04-03-2008, 01:44 PM #7
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Jeanne,
I am always pleased to hear than someone has good results with HBOT. I also think you are right, it is an important message to get out. My dear friend Vic Collins has been sending this message out for years. He was really instrumental in my efforts to get treatment. Everyone should read his posts.
I hope you and your daughter are doing well. Thank you for sharing. Diana
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