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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I was diagnosed with RSD when I was 12 years old. I lived with it for almost 4 years and was bedridden with it. The RSD spread from my right arm to eventually full body. I was misdiagnosed several times. I was diagnosed with pulled muscles, sprained wrist, arthritis, broken bone, and finally just plain old crazy. MY doctors could'nt figure out what was wrong with me so they said it was all in my head and to see a psychiatrist. As as last hope I went to see a doctor my mother used once and he diagnosed me with RSD immediatly. I was already one year into the disease when i was diagnosed and the treatments begain. I went from one nerve block to another, rounds of steroid shots, morphine caths, morphine pumps, and my next step was cutting the sympathetic nerve. Before we made our final decision my mother went online and did her last bit of research and came accross Hyper Beric Oxygen Treatment therapy. We went back to the newest doctor and told him about it and he said he knew about the treatment all along and that it would work but since our insurance did not cover it he would use the other treatments (that did not work). So after dropping the doctor and getting out of the Childrens hospital in Dallas Texas we went to have the HBOT done. I went in for my first treatment in a wheelchair and after a month of treatments went rollerskating in the park. Completly pain free. I have been in remission from RDS for 5 years now and I was the 28th person cured from it. I know that this treatment works, and I am living proof and the man responsible for it is Phillip in Olny Texas. I know that my insurance did not cover this treatment, but it saved my life. I will be more than happy to answer any questions on this treatment or RSD. HBOT was my miracle, I hope it can be yours too!

:angel: Jenny:angel:
I think it's great that HBOT worked for you. You said that you use the word "cure" because you don't know what other word to use. I think "remission" would be more appropriate. A "cure" indicates that the treatment completely heals [U]everyone[/U] who has the treatment. Since there are others with RSD who were not relieved of their RSD through HBOT, then it can't be a true cure. Since RSD affects people differently, treatments have differing outcomes.

I am very glad that HBOT worked so well for you and that you were able to afford to pay for it without insurance. I am curious though - why didn't your insurance cover the procedure? What reason did they give you when they denied it?

You said that you are the 28th person "cured" from RSD. Do you mean that all of you are now symptom-free after the HBOT? Where did this statistic come from? Do you have more data on the 28 people? I'm wondering if there is some link among them, such as a comon age range, affected limbs, genetic make-up, or something that you all have in common that would allow you all to experience the same effect from the same treatment.
I agree with everyone who has posted. Let's see the percentage of people that have been "Cured". This is a very strong word to use on this board. Since you are a "newbie" lets set the record straight: You are coming into contact with lots of people who suffer everyday 24/7 and have their lives turned upside down from this horrific monster of a disease. Everyone on this board shares one important thing.....RSD. We suffer together with pain, we understand everyones problems because we live them daily, the drs who prescibe for us and deny us are all the same, we are treated like "outcasts" in society because we are "all" making up the same excuses for our pain thus making us perfect candidates for the pysch house. You supposedly know what I am talking about.

How old are you now? You said you were diagnosed when you were 12 years old, so that means you suffered for how long? There are some who post on this board who has had RSD for over 10 years, some 20. We all would love to hear about a sure cure, but let's face it there isn't one. HBOT can help some, but only put it into remission in some people. How many sessions did you have to go thru? I understand that the amount of sessions in HBOT is about 20, but sometimes you have to go to 40. It doesn't always work and you said you are number 28? Well, 28 out of how many thousands who suffer with RSD daily? How about what is the amount of people who have actually tried treatment throughout the US? Could it be hundreds with relief or without relief? Remission or what? I read an article recently about a person who spent the money for HBOT, had 40 sessions (actual amount), spent around $250 per session for one hour daily and the only thing that came from it was...........she was able to sleep longer at night and slight reduction in pain. Thus she was able to move a little more freely, but guess what? The pain came back after she stopped the sessions. So, does this mean you make your savings account a little less and then you have to start up again for another 40 sessions? I don't think so.

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Thanks!
Hey Jules, I think you hit the nail right on the head!

I think age is a very BIG factor in RSD. Most of us here are over 40. Most children and teens can rebound from almost anything. The older you get the harder it is for our bodies to respond to treatments. It's just a fact of life.

I'm happy for anyone to go into remission. I know very few who do, and I'm happy foir them. In the mean time, we keep plugging away day after day in hopes and prayers that today will be a better day. I use a machine to taper my pain, but I am no way cured. I move better and take less meds, but tripping can set the whole monster off again and sometimes with a different vengenance.:rolleyes: And it's back to square one. Until they can find a method that is cost effective, we can only share our pain, our stories and learn from one another. Here's to a better tommorrow. Aloha Skooze:angel:
[QUOTE=MissJenny]I think it gives others hope who have been through RDS, and are going through it now, to know that someone who had it to the final stages ( according to doctors) can be in full remission with no pain and no side effects. Having HBOT is expencive but it's no more expencive than searching out doctors and experementing with treatments that do not work but only allow a temporary fix. It's proven that the longer you are in remission the less the chances are of having it come back. I worry about the little bumps and bruises that just might cause it to come back but i would rather worry about those little things that be in the conditon that i was in. I truly feel for every person on the board and i do not want to put false hope out there. I only put this out there because it is so important to me to let others know that this treatment does work. If putting the word "Cure" offends people that i am very sorry, but I do not know what other word to use. Because what the HBOT has done for me IS a cure. And it is not only me there are many others that have been helped from this treatment. Not only people with RSD but other with everything from Lymes Disease, to coma patients. People should know that there is more out there than nerve blocks and epidurals and day after day of pills. RSD sufferers need to know they can live a life [U]pain free[/U]!

:angel: Jenny:angel:[/QUOTE]
For those of us out there that only have our insurance to pay for our expenses and not being able to pay for the copay hardly the expermental drugs generally are not available to us. I have tried the HBOT though My husband did everything he could to get me the treatment and I've had this disease by then for 6 years and it didn't do anything for me so it is not the end all cure all I'm sorry to say. I'm glad that it worked for you but it does not work for everybody just like not every pill out there works the same for everybody. I think what they are trying to tell you is be careful what you say word it differently. I'm so very happy that you were cured and hope that you never have to go through this horrible disease ever again. Know that God blessed you. The rest of us unforunately have to go through the endless pills and shots.

Meg Bishop





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