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 12-23-2006, 01:30 AM #1
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Vicc Vicc is offline
In Remembrance
 
Join Date: Nov 2006
Location: SE Kansas.
Posts: 374
15 yr Member
Vicc Vicc is offline
In Remembrance
Vicc's Avatar
 
Join Date: Nov 2006
Location: SE Kansas.
Posts: 374
15 yr Member
Default 4-1/2 years of being wrong.

There are some members who might be tempted to dance for joy (despite the pain), at the thought that I have finally realized I have been wrong in writing that RSD is an ischemia-reperfusion injury (IRI). Well, the title to this thread was meant to raise your hopes before dashing them to the ground.

I have been wrong for more than 4-1/2 years; wrong in the way I have been writing about it. That realization came to me this afternoon as I steeled myself for another attempt to write the article I plan to submit for publication. It happened this way:

I figure that I have about 2500 words before an editor at the journal looks at the length of the article and tosses it aside as simply too long to bother to read, much less publish. But 2500 words are not enough to explain IRI to physicians who aren't familiar with it; I wrote a 6 post series at the other forum trying to explain it, and none of those posts came in at less than 950 words.

Then came the insight. I am writing to physicians familiar with HBOT and I'm not responsible for teaching them about IRI. My article is intended to provide docs and chamber operators with information showing that IRI is a much more reasonable explanation for RSD than nerve injury and to show them that there is a scientific explanation for why HBOT works for some RSD patients, and that there is a scientific explanation for what happened to Lisa (see Sydney's thread Desperate...HBOT).

Anyone reading that article (if it is published), who isn't familiar with IRI and is unwilling to accept my claims on faith will have to learn about it on his/her own time.

Then I realized the same is true of forum members and others who will read my article on the website I plan to create. I have spent 4-1/2 years and thousands of words trying to educate people on an extremely complex, but well understood disease process, and no one want to make the effort to read all that stuff. More important, you don't need to.

All you need to know (and believe) is that there is a disease process that begins with a physical trauma and never ends; because the disease never ends, it just keeps taking more and more of your bodies.

What you really need to know is that there is a treatment available today that offers long term -- six months or more -- remission, that can safely be repeated multiple times as needed, and is cheaper than the price of a few sympathetic blocks.

I have wasted 4-1/2 years not talking about that treatment because I had it fixed in my mind that you needed to learn about IRI before you could understand how and why this therapy works.

I will tell you about that therapy (no secret, it's HBOT) in my reply on Sydney's thread. I'll talk a little about IRI, and then about why HBOT is the only therapy available at this time that can repair IRI damage. I hope all of you will read it.

On to a brief update on me: I am better. I am no longer overwhelmed by a past I can't alter or by unwanted emotions resulting from that past. I am sure that when I go to my doc on Jan 17, the scale will show that I have not only ended 18 months of weight loss, but that I have actually gained weight.

Gaining weight is important for another reason. I have reached the point when I am taking so much oxycodone and hydrocodone for the very real nerve injuries in my back and spine that any more will affect my ability to think clearly.

On my last visit I told my doc I wanted him to refer me for testing involving the intrathecal (morphine) pump. He says it will in all likelyhood work very well, but no one is going to put it in while I'm at 130 pounds and still losing weight.

I don't think any of this would have been possible had I not posted my PROBLEM thread and talked about what I was going through and why; and without knowing there are people here who genuinely care about me and even like me.

I know about discussions in psychiatric/psychologic literature about some people needing to be in crisis "hitting bottom" before they can make the effort necessary to change; I even know that this is certainly true of me. But I don't think I could have found a way to change me if it hadn't been for your patience in allowing me to talk about my pain -- get some of the poison out -- so I could start focusing on the solution, not just the problem.

Thank all of you for your replies on that thread and thank the rest of you for not telling me to "get over it" and stop talking about it here.

Finally, on the other thread I said I would have three months to finish my article and to gain enough weight to live independently. I mentioned here that I will see my doc on Jan 17. He is a former professor of neurosurgery and he has not only encouraged me to write, he has promised to read my article critically; to correct it as if it were a paper by one of his students. I plan to give him that opportunity on Jan 17.

I don't know that I can finish it by then, but I have nearly a month to put about 2500 words in the right order. That just a little more than 100 words per day, and anyone can write 100 words per day. Getting them in the right order is the problem, but I will either solve that problem or I might as well stop pretending I have something to offer to RSD people.

OK, so now I close this post and move on to my reply on Sydney's thread...Vic
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