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 Thanks for your help

Hi, Vicc. I appreciate your reply... I have not forgotten to respond, I have just about no energy, but I do have many comments and questions regarding your post.

First, I am going to try the GSE. Anything is worth a try. Though everyone IS different. That seems to be the case with different RSD treatments, as I am about to say again... I think you have to be careful when saying that it prevents migration of symptoms. That is something you really cannot prove. Yes, you believe it did in your case. But everything is so unsure about RSD. For instance, some people's RSD spreads, and others it doesn't. Some people have sucessful treatment with nerve blocks. Others don't. I think that you never can be sure. RSD plays by no certain set of rules.

Could you please give me the link to the article written by one of the RSD "experts" on IRI? I would really like to read up on that.

The study regarding children/ adolescents with RSD who were treated with physical therapy can be found here:

http://www.rsds.org/2/library/articl...ive/index.html
under: Author: Sherry DD, Wallace CA, Kelley C, Kidder M, and Sapp Lyn.
Title: Short-and Long-term Outcomes of Children with Complex Regional Pain Syndrome Type I Treated with Exercise Therapy.

(check out the other articles they have there, too)

I know that this is children being treated with PT, and not adults, but I still think that it is proof that RSD can indeed be TREATED with physical therapy. In fact, in this specific study of 103 children, they did not use any medications. So, there is proof that physical therapy alone CAN be used for RSD patients. In fact, opposite to what you are saying, weight bearing is the most important thing to do!

If you state that you believe HBOT to be the "only available therapy that offers any hope for ending the ravages of RSD", I do have another question... I have a friend who had RSD 12 years ago. He went to PT for a year, and 9 months into it received nerve blocks. All his symptoms and pain dissapeared through them both (along with medications) and he is symptom and pain free to this day. How do you suppose that people do recover, when they do not receive HBOT? Right here I am suggesting that I think your theory cannot be 100% correct. Because everyone is different. With RSD there is not one thing to do. Different treatments help different people.

Since you don't believe RSD involves the sympathetic nervous system, what causes the sweating, and even blood pressure changes that people with RSD experience? Is that not something that the SNS is doing?

More about the HBOT: it is not always sucessful, huh? Do you think it has better results than any other treatment? It certainly isn't 100%.

I do have other questions for you, but don't have the time or energy right now. I wish I knew 100% that you had it all correctly, but I see flaws with some of the things you are stating. And, I am seriously questioning your statements. Thanks for your time.

I am glad you want questions... but I hope you don't regret that.

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

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

Vicc,
Here is where you wrote about the RSD expert writing about IRI... I'd love the article... could you PM it to me? Thanks.

Vicc, I started a thread for you with questions about HBOT, because I do have more questions...

Here's the link:
http://neurotalk.psychcentral.com/sh...ad.php?t=13809


Thanks for being patient with me and answering all my questions, and responding to my comments.

I do understand why HBOT is the only treatment if you say RSD is an IRI. Thanks for explaining.

Hope to hear from you more soon.

Hi, nurse here who will confirm that 77% oxygen sats would require intubation in most cases. If this did not occur and Roz was not treated as a medical emergency then I suggest she may have been misinformed regarding how low her sats were.
I have also had 90 "dives" of HBOT as a part of my wound (infected with MRSA) healing treament. It is paid for by my workcover providers.
It has not appeared to be too useful for may pain but certainly has helped my wound.
I feel I must share with you that in the months I have been "diving" and sharing a tank with 6 other people there has never been anyone who has had an adverse reaction to the HBOT.

(Originally posted on another thread by InHisHands)

Hello, Vicc

I appreciate your replies to my various questions. I have a few regarding HBOT, if you wouldn't mind answering them.

I may have an opportunity to access HBOT, at an alternative medicine Doctor's office. My younger brother has autism, and so my family has worked with this Dr. before. If he feels comfortable treating someone with HBOT that has RSD, then I might give it a go.

I understand now a lot better why you feel HBOT is the only treatment for RSD if you are looking at it from an IRI standpoint.

In order to completely heal I understand that you need more than a few treatments. But, approx. how many? And how often? Is it a long term thing (months and months of treatment) or 4 weeks will do the job?

You speak of setting the HBOT chambers at certain depths... how do you tell a Dr. (who knows or at least thinks he knows what he is doing) not to set it at certain depths or to set it at a certain depths?

Since you claim it has been successful in others with RSD, how many others do you know who have had it and are doing better from it? Can you put me in contact with any? Are any here on this board?

Thanks again... I am willing to try just about anything about now... and HBOT sounds hopeful.


Hi again, IHH,

I’m sorry for the long delay in responding to your questions, it’s been a really difficult week but I’m recovering and at least able to type again.

I hope what you read here will be of some use to you, but I don’t think anyone will find it persuasive until you understand more about ischemia reperfusion injury, so I plan to devote most of my time and energy into a series of posts describing what it is and how it explains the signs and symptoms of RSD. I hope that after reading some of them, what I say here will be more useful in making informed decisions about treatment.

As I said earlier, IRI destroys microvascular systems (MVS), the arterioles, capillaries and venules that deliver arterial blood to all of our cells and returned “used” blood to the veins. It doesn’t destroy every MVS; if it did the result would be death by gangrene in a very short time as none of our cell would receive either of those essentials, but it randomly destroys enough to seriously affect cell functioning throughout the affected area(s).

Those areas with the most widespread damage show the most serious symptoms, which explains why some of us experience more pain than others and some of the rarer symptoms (such as hyperhydrosis), can be severe in some and absent in others. The fact that almost all of us are extremely hypersensitive to cold is one of the most significant signs that this is an IRI, and I will explain why in one of the first few posts in my campaign to show why the medical world is wrong.

Now, in response to your questions: the apparent mechanism of action of HBO is stimulation of vascular endothelial growth factor VEGF. This is why it is approved for the treatment of IRI, making it one of a very short list of disorders the FDA and the Dept of Health and Human Services (HHS) will allow hospitals to treat with HBO.

There is no research describing the long term effects of stimulation of VEGF by HBO, but there is enough science to warrant some basic assumptions, among them: The body may not have the ability to create unlimited supplies of VEGF on demand despite intense stimulation, and that artificial stimulation of VEGF could result in an adaptive response to the increased stimulation (the body may not respond to normal stimulation after prolonged artificial stimulation)

It is also likely that the creation of new MVS is limited by the body’s ability to marshal the necessary materials where they are needed and that it is reasonable to view new MVS as similar to new plant growth; that it takes time to mature and become fully functional.

These assumptions are based partly on what is known about the healing process in general, but are also upon the fact that little is known about the long-term effects of HBO in people who have undergone the therapy. We could expect that if the results were overwhelmingly successful the news would have gotten around by now. Some of the successful ones would have taken time out of their restored lives to tell others about their continuing remission.

.Since RSD/IRI, means that millions, or even more that a billion, MVS have been plugged and functionally destroyed, the assumptions I cite mean it will take time to create enough VEGF to begin the process of replacing all of them; time to marshal the necessary material, and; time for the new MVS to fully establish themselves.

This is why I believe that the delivery of 100% oxygen (O2) at 2.5 atmospheres (ATA) for 20 to 30 daily sessions – not an industry standard, but pretty typical for most free standing chambers - may actually be harmful to RSD/IRI patients in the long run: even the most intense stimulation of VEGF would be useless if the body simply can’t produce enough in just 30 days. If the body adapts to require increased stimulation in order to respond, this would mean less VEGF during the time directly following the end of HBOT.

There is an added problem with treating RSD/IRI using HBO: Oxygen free radicals (OFRs).

(OFRs are oxygen molecules that are missing one or more electrons. This makes them highly unstable and the only way to restore stability is to steal the needed electrons from a nearby molecule; turning that molecule into a free radical (FR) that must in turn steal electrons from another molecule.

(This chain reaction of thefts is what damages cells, and it can only be ended by a FR coming into contact with an antioxidant, which can surrender electrons without becoming a FR itself, or by two FRs coming into contact, which results in one being restored and the other becoming an entirely different molecule.

(OFRs always initiate these chain reactions. They are the weapon the immune system uses to destroy cells and pathogens during the non-specific immune response (NSIR) to pathogens and cell debris. In high concentrations, OFRs produce so many chain reactions the target is literally ripped apart. Our cells are attacked by OFRs as many as hundreds of times per day, but the cells are able to repair themselves when this happens. A significant increase of OFRs could destroy newly created MVS’ before they are fully established).

Most of the research into OFRs during HBO reports that as much as 15% of the O2 delivered in this way is or becomes OFRs. This has been recently disputed and is the source of some controversy among HBO researchers, but even if the percentage turns out to be much lower, I believe that the increase in OFRs is directly responsible for reports from many RSD/IRI patients who suffered catastrophic relapses after reporting initial improvement during HBO

This alone is sufficient to demand that the maximum ATA for us be no more than 1.5. I would point out, however, that those people who have undergone HBO after talking to me have taken the antioxidant grape seed extract (GSE) and none have suffered a catastrophic relapse. A sample of five is too tiny to mean anything, but the precaution of taking antioxidants before, during and after HBO seems wise to me.

I don’t think we will ever know the best therapeutic application of HBO for RSD/IRI, I certainly don’t know today. Based on the assumptions I’ve make, however, I can say what I would demand if I were able to access it.

I would begin at 100% O2 at 1.5 ATA for five days, then 50% at 1.5 ATA twice weekly for at least seven weeks (20 sessions) and would be prepared to continue even longer if significant symptoms remained, and to repeat HBOT if I began to show evidence of relapse at any time in the future.

It might be that RSD/IRI requires an even more conservative approach, but if the assumptions I’ve made do apply, a lower O2 percentage at a lower ATA should result in longer periods of remission.

Why would anyone want to consider such a time-consuming and expensive process if relapse is possible or even probable?

The short answer is that if RSD is IRI, the only route to recovery is replacement of those lost microvascular systems, and HBO is the only available treatment that specifically addresses this problem.

Also, compared with other procedures, HBO is relatively inexpensive: prices fluctuate wildly even in areas where several chambers are available, but it can still be obtained for about $350.00 per session. 20 sessions would cost $7,000.00 plus incidental costs of less than $500.00.

When you contrast this with the cost of other procedures, most of which reported significant initial successes that could not be replicated by later clinicians or researchers, 40 sessions for about $15,000.00 is not really that expensive.

This is only true, of course, if RSD really is IRI. You will be better able to judge this for yourself after reading just a few posts in my planned series…Vic

Thanks Vicc, you answered my question of what is the right amount in terms of frequency of visits. I can only do 60 minutes at a time 90 makes me clautrophobic and edgy.

I was doing HBOT after my TOS surgery. Then I stopped doing HBOT and the RSD symptoms are rearing up

I am close to HBOT therapy and am thinking anout starting it again. I am going to print this off and talk to HBOT doc about it and trying your protocol.

I will let you know what he says.

to you Vicc. God Bless

Since my views on HBO seem to have attracted interest, it seems best to me to bump this thread in order to allow those who want to comment about them to read what I actually wrote.

I've said several times that my goal is to get people interested in learning about ischemia-reperfusion injury (IRI). I'm not so arrogant as to believe that anyone will rush right out and sign up for HBO because I tell them to, but I do hope that by discussing a mechanism of action for HBO, someone will take the time and effort necessary to learn whether IRI might make sense.

In RSD, it really does boil down to which view makes more sense: Those who believe this is the result of a nerve injury and that the success rate of ketamine therapy seems attractive will choose it. Those who take the time to learn for themselves whether IRI is a better explanation for our signs and symptoms will look to HBO.

The best way to make an informed decision is to gather information. I can't provide enough information about IRI to convince anyone; I can only hope to give people a reason to learn about it for themselves...Vic