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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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Grand Magnate
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Thanks so much Vicc.
I also sent you a PM with some questions did you see it? |
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In Remembrance
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Yeah, I did, and I'm sorry I haven't replied yet, but I will.
I think my entire life can be described as trying to catch up, but the difference between then and now is that I used to think I could. I promise I will reply...Vic
__________________
The great end of life is not knowldege but action. T. H. Huxley When in doubt, ask: What would Jimmy Buffett do? email: : . |
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#3 | ||
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Grand Magnate
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No worries whatsoever. Take your time.
I just wanted to make sure you got it. ![]() You have so much knowledge and I am so appreciative just to read your posts. Here's a happy V-day hug ![]() |
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#4 | |||
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In Remembrance
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Hi again, IHH,
Well, you do have a number of questions; comments too, but that's ok. I would like to answer them in detail, but that would take more words than anyone would want to read at a single sitting. First, I didn't say that GSE prevents symptom migration; I said I can't prove GSE prevents symptom migration, then offered a brief summary of my experiences. In posts at B/T, I wrote in some detail about research into ischemia-reperfusion injury (IRI) that supports the use of GSE to delay onset of symptom migration, and I may write a post here on the same topic. Meanwhile, I would be remiss if I didn't tell others what works for me. I don't agree that RSD is so different in each individual as to make it impossible to find an effective therapy that works for most: there will always be variables that prevent any therapy, for any disease, from being 100% successful, but that is no reason to stop trying. You speak of successful outcomes from blocks, but I know of no research confirming this. The consensus today is that blocks provide temporary relief and in the vast majority of cases eventually have no effect whatsoever. I couldn't find anything in my previous posts about an RSD expert writing about IRI, but I have mentioned it in the past; as an example of someone who knows about IRI and ignores its connection with RSD. His article on IRI is pretty complex, contains a lot of medspeak and says nothing about RSD. I will send it if you want, but it doesn't have anything you're looking for. Re: The Sherry Study. Physical therapy has been a component of RSD treatment since Dr Weir Mitchell told his first patient to "walk off the pain". In the 144 years since, there has been only one published article reporting "successful" treatment of RSD patients through PT: this one. As I said before, if PT were effective, it would have been announced, confirmed and reconfirmed long ago. I won't speculate about the conclusions you cite here, I'll just wait for someone else to confirm them in another article. As to weight bearing, I am not the only one to say it is harmful; that is the consensus of nearly everything I have read about RSD and PT. I hope you will stop any weight bearing exercises before the pain makes you stop. When I say that HBOT is the only available therapy that offers any hope for RSD patients, I speak from the perspective of RSD as an IRI; a physical disease process. The body reacts to physical damage; tries to repair and heal it. Sometimes it works, but most of the time it doesn't. There will be instances of spontaneous remission from RSD, but the rest of us will need to rely upon medical intervention. The body's response to IRI is to increase production of vascular endothelial growth factor (VEGF), which is the first step in creating new microvascular systems (MVS). But the body doesn't create enough VEGF to do the job. HBOT is effective in treating RSD because it stimulates production of much larger amounts of VEGF. Interestingly, this is considered an adverse event during HBOT, and many writers consider it sufficient reason to oppose HBO in any but the most extreme emergencies. I have read skeptics who refer to HBO as a cure in search of a disease. It is the ultimate irony that the very adverse event they warn against is the mechanism of action against the disease HBO has been searching for. "Different treatments help different people". Nothing helps anyone. The latest rage is ketamine therapy, but as you probably read in another thread, it falls far short of the mark. We will need to wait to see how long the "successful" remissions last. I don't say the SNS isn't involved in RSD; like everything else in an affected limb it can function abnormally, but that is the result - not the cause - of RSD. No, HBOT is not always successful. One reason is that few people even resort to it until it is the last, desperate attempt to do something before ending your life. The RSD is usually far along by then. But that isn't why HBO fails too often. HBO chambers advertise for RSD patients; if it hasn't helped one of their clients already, they know it has helped people, and most are in the business to help fight disease. The problem is that they don't have any idea how it helps, so they usually use 100% oxygen at 2-1/2 atmospheres (ATA); pretty much the industry standard. 2-1/2 ATA works well for emergency situations such as the "bends" and carbon monoxide poisoning, and for late stage diabetic issues such as unhealed wounds, infections and gangrene, but I think it is way too much for RSD. One reason for this is that HBO is reported to contain as high as 15% oxygen free radicals (OFRs), and these thingies do all the cell damage in IRI. Reports of patients who enjoy dramatic improvement in the first few sessions, then catastrophically relapse a few days after HBO, certainly suggest that secondary damage from this massive influx of OFRs may be the problem. I have strongly urged people to take GSE during and after HBO, and no one that I know of who has taken an oral antioxidant has reported that sort of relapse. The main reason I believe HBO should be delivered at less oxygen and a much lower ATA is the evident mechanism of action: stimulation of production of VEGF. Someone with full body RSD has lost millions of MVS, and these can't be rebuilt overnight. It will take a lot of VEGF, then a lot of time to build new MVS and allow them to mature. Current HBO practices don't take this into account; which makes sense, because the operators don't know that RSD is IRI. I haven't described the role of OFRs in RSD/IRI, much less how MVS are destroyed, but if you want to learn more you can go to Medscape or PubMed and look up IRI and start reading research abstracts; or you can wait until I take another swing at describing the IRI process: from initial physical trauma through the destruction of MVS. I think HBO is the only therapy that addresses the problem in RSD, and it is certainly the safest and most cost effective way to treat this disease...Vic
__________________
The great end of life is not knowldege but action. T. H. Huxley When in doubt, ask: What would Jimmy Buffett do? email: : . |
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#5 | |||
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Magnate
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I just wanted to say that I have had success with the blocks and I have several friends here that have. One of my friends is a nurse at the hospital and she has RSD in her right foot and she told me that when she sees it starts coming out she goes to get a block. She has worked at the hospital for at least 15 years and has had the RSD for as long.
I had 3 blocks to help put the RSD into remission and it worked for me. The surgeries I had brought it back out and then I started asking for blocks with the surgeries and the Drs. did them with no argument. I do believe that the blocks work for many people. Maybe not all but many. As far as PT. I spent over 3 years in PT. It didn't heal me but it helped to get me moving better then I was. I went twice a week for over 3 years to deal with my back which I was bed ridden at the time and they got me walking, then I went for the TOS and got somewhat better but had to have the surgery anyway. Then I went for the RSD and Fibro and I saw a world of difference as far as movement was concerned. I worry about people saying that the blocks don't work, I believe that they are one of the best ways to help the RSD if they do work for the person getting them. They do sometimes become useless to certain people with RSD but I think people should let the Drs. try them if they offer them to a person. Ada |
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