Hi Roz,

I suppose I should look up the relationship between depth in feet and atmospheric pressure, but I can be a rigid old coot; 15 feet is not a scientific way to measure air pressure. It is a throwback to the days when HBO was used almost exclusively to treat divers who suffered the "bends" after rising to the sea surface too fast. I guess they understood depth, but couldn't get their minds around air pressure. I don't know what 15 feet means.

You don't seem to be having much luck in finding doctors: one tells you that he "guesses" the bruises were the result of a pulmonary embolism (was he guessing the embolism was acute or long-healed?). Either way, I think you should have been hospitalized for this severe reaction.

Another doc sees that your O2 level is "way below norm" and refers you to a pulmonary specialist, who tells you your O2 is 77%. In my not so humble opinion, the only explanation for the way you were maltreated is that you don't have medical insurance, or your insurance sucks.

I would have thought that widespread bruising would be enough to see you admitted to the hospital for testing, but there may be relatively benign explanations for that.

77% oxygen is an emergency. Hard to breathe? Hell, as I understand it, O2 that low makes it hard to live. My memory isn't as reliable as it used to be, but I remember when my daughter couldn't take in enough air.

I followed the ambulance to KU Med Center and by the time I got into the ER it seemed like everyone there was gathered around her bed. She was already on oxygen and I heard the words "hyperbaric oxygen" from someone in that group.

I think her O2 was in the high 70 to low 80 percent, and it was clear to me that they weren't sure she was going to live. When they took her to a room, I wondered if I would see her again. I don't know how people can get through stuff like that without God. (I could be wrong about the numbers, it's been many years and lots of oxycodone ago).

Since you're still alive, I won't bother to Google it, but as I recall, below 95% oxygen is not good. Perhaps one of the nurses here could help on that one.

You will be horrified to learn that in most states a person can be making french-fries one day and an HBO "technician" the next. Maybe LisaShea will add her experiences to your horror story.

Anyone contemplating HBO can only be assured of competent staff by making sure the chamber is certified by the Undersea and Hyperbaric Medicine Society.

The manufacture, sales and even advertising of hyperbaric chambers is closely monitored by the FDA. which (like much of the medical profession) suspects HBO is some sort of voodoo medicine. They don't seem to care about what happens to patient's, however, and I suspect that they don't mind a few dying each year; it reassures them that they're right: there is something amiss about HBO.

There are people in the business who are only in it for the money, so buyer beware...Vic

Vicc, I have a few questions for you, if you don't mind...

You state that HBOT "is the only available therapy that offers any hope for ending the ravages of RSD" and I guess I am just wondering, if that is the case, don't you still have RSD? Have you personally had HBOT? Or are you saying it works the best out of all the RSD treatments? In your opinion, are all other therapies useless? There are studies out there for instance, that have proven physical therapy alone has "cured" adolescents with RSD. No medication. Just physical therapy. I guess that is why I am a big advocate of the PT. I am going, it has helped me, and I plan on doing that to recover. I am not against medications (just using that study as an example), and I am using them along with PT.

I am VERY interested in your post about why RSD can't be the result of a nerve injury.

Why do you say, "You see, in RSD the experts have been 100% wrong for 100% of the time. They are still telling us that this is a neurological disorder, despite that fact that at least some of them know about IRI (one even wrote an article about it), and know that this makes more sense." ? How have the experts been 100% wrong 100% of the time? Can you give examples? What is RSD? What type of disorder, if not neurological? Why isn't it part neurological? The RSDSA states that it is part neurological/ part immune system malfunction (do you think that it could possibly be both???). (http://www.rsds.org/pdf/Recog_Undrstd_TreatRSD_530.pdf)

"CRPS/RSD occurs when part of the nervous
system and the immune system malfunction
as they respond to tissue damage from trauma,
such as an injury or a medical procedure.
The nerves misfire, sending constant pain signals
to the brain. There are two types of CRPS:
Type I (RSD) and Type II (Causalgia), which has
definite nerve damage."



About the GSE- how do you prove that it does stop symptom migration? How can you? My RSD has spread... and spread. Would you really tell me that if I had taken the GSE, it would have stayed only in my one upper extremity, and I would not be dealing with what I am today?

I have read many of your posts. I can get along with your theory of IRI/ RSD. I have RSD in both upper extremities and both lower extremities. I slammed my finger in the car door, and that started my RSD. Your theory seems logical, and maybe you have the right knowledge and answers. I would like to ask you many more questions, if you would be willing. Thanks.

Hi Vicc,
I should of used the term pressure instead of feet. I think my husband corrected me at the time as well.

This was around 3 years ago. Maybe when I was in HBO I had a lung infection Vicc I can't remember. I certainly had no blood clot in my lung. Nor have ever had one to my knowledge.

I found out a few weeks later after the fact if your oxygen goes down to 84 or below they are supposed to hospitalize you. I was just DX as well with RSD at the time after being told for 2 years I had a torn rotator cuff with a pinched nerve down my right arm. So I wasn't even sure of the SX of RSD then either. I was bedridden at the time. In very rough shape. In fact I was bedridden for about a year. Between the 2 to 3 year mark.

Thru out most of RSD which I just passed the 5 year mark. I have had to deal with a HMO. In order for a PPO to pick me up they want 2,200 a month. But it still would be a narrow range of the MD's I would be allowed to see.

I have been a cash patient at times even with HMO insurance. My husband makes good money or I would be up the creek without a paddle.

I was offered Ozone therapy before out of the States. But I don't know much about that.

Hugs, Roz

Hi IHH,

I try to mention my history in occasional posts because your first question would be mine. So here goes, and this is the short version.

I was first disabled in 1979, when an ortho surgeon botched two laminectomies; first by puncturing the dura (the outer of three layers of the spinal cord cover) then not plugging the leak properly. A week later I began leaking cerebro-spinal fluid into the tissue of my lower back. He went back in, couldn't find the leak and so grafted a patch of muscle to the dura much like one would patch an old inner tube.

Its kinda tight in that area, and his graft has been pressing against the spinal cord and causing moderate to severe pain for 26 years. The diagnosis was scar tissue/recurrent disk at L5 and L5 radiculopathy on the left.

After ten years of trying to restore my strength and endurance, I finally realized that I was never going to build a bridge or drive a truck again; so I went to college and became a social worker. I could only walk about 200 feet using a cane, so voc rehab bought me a power wheelchair for work.

Then my job description changed so that it would no longer require a licensed social worker; I would do much the same work and get the same pay, but I wouldn't be a SW, nor would the state provide continuing ed for my license.

I took a job as SW at a state psych hospital, where five months later a large and violent patient grabbed a smaller patient by the wrist and began running full-tilt toward me.

The big patient dodged around me, pulling the smaller one into me...and kept running while still holding her wrist. The top half of my body twisted a bit more than 90 degrees while my butt stayed firmly planted in the chair.

The net result was diagnoses of bilateral epidural fibrosis (scar tissue) at S1, compressing both S1 nerve roots (severe pain); bilateral S1 radiculopathy; bilateral leg pain, and arachnoiditis (scar tissue on the arachnoid, the middle layer of the spinal cord cover), and finally - months later - RSD of the left foot.

A work comp whore wrote that I had faked the 1979 disability and was faking the 1995 injury. The MRIs, ct-scan and EMG confirmed the diagnoses. After five years of Hell, and no treatment for any of my injuries (except a couple of nerve blocks for the RSD) the law judge ruled I was too disabled to attend hearings. WC settled at 99% disability.

The bottom line is that since my 1995 injuries I have not been able to tolerate the pain that would go along with trying to access HBO (it takes the pain three days to subside to normal after a trip to my doc's office).

Next; I can't be sure which studies you refer to, but I would guess they are what is called case studies: individual reports about a specific patient. Case studies are not research, they can't be replicated by following the protocols of the original doc (because there were none), and are generally considered only somewhat more reliable than anecdotal reports.

One would think, however, that with so many RSD patients undergoing physical therapy, if it were effective we would at least see dozens, if not hundreds of case studies reporting cures.

PT is about the only way for patients to maintain any range of motion (ROM), which is critical if we are to keep our joints functioning. If RSD is an IRI, however, PT involving more than minimal weight bearing can be harmful: muscle cells "break down" during exercise and are restored to an even stronger state during rest, but only if they receive adequate oxygen and nutrients. IRI means, by definition, that they aren't.

I am currently working on a long-delayed reply to a post in which I describe exactly why RSD cannot be the result of a nerve injury. In it, I may or may not point out that CRPS-I is different from CRPS-II precisely because there is no nerve injury in the former. There is no nerve injury leading to the latter, either: just a convenient nearby nerve injury that can be blamed.

100% wrong 100% of the time: When RSD was first discovered, it was attributed to nerve damage caused by high velocity impacts such as shrapnel or gunshots. It was thought that these types of wounds injured nerves some distance from the actual site. We know now that that even the most insignificant trauma can lead to RSD. High velocity impacts are not the cause of what was called causalgia at the time.

In 1916, a French Army surgeon during World War I saw his first RSD patient, and noted that every place the soldier said was painful was also purple. He had seen cyanosis in a patient who suffered from "a rare sympathetic disorder" who reported severe pain in cyanotic tissue.

He began investigating RSD; examining patients, and noted that most, but not all, showed cyanosis in the areas they reported pain. This was before anyone realized that minor injuries could lead to RSD, but it fit the causalgia picture.

Most sensory nerves of the peripheral nervous system (PNS) are close to the skin surface, while those of the sympathetic nervous system (SNS) are found deeper inside the tissue, where they are more protected from injury.

LeRiche argued that causalgia was the result of damaged sympathetic nerves. These nerves control arterial blood flow by dilating and contracting the smooth muscle that surrounds arteries, so damaged symp nerves were abnormally constricting blood flow through the arteries. This not only explained cyanosis, but every other sign and symptom of RSD; except one, symptom migration (or spread).

In the early 1940s. a test was developed that could measure arterial blood flow. This test would prove LeRiche was right; but it didnt.

Researchers found that arterial blood flow in RSD affected limbs was equal to, and sometimes greater than that in contralateral (opposite) unaffected limbs and the limbs of control subjects. Abnormal vasoconstriction caused by damaged sympathetic nerves is not the cause of RSD.

LeRiche publicly abandoned his hypothesis: Few others followed suit. This disorder was renamed reflex sympathetic dystrophy about two years after it was proved that it isn't RSD. For the next 60 years, there has been nearly unanimous agreement that RSD is caused by damaged sympathetic nerves, despite this proof.

In 1995, a consensus of the International Association for the Study of Pain (IASP) agreed that this isn't RSD, and should be renamed CRPS. They devoutly believe CRPS is the result of a nerve injury, they just can't figure out which nervous system is involved. No one at IASP seems to have noticed the contradiction between belief in a nerve injury and their definition of CRPS-I as having no nerve injury.

There is now a campaign to attribute RSD/CRPS to a spinal cord issue called central sensitization. I will discuss that in my delayed post, so there is no point in going over that now.

High velocity impact: Wrong. Sympathetic nervous system: Wrong. Central sensitization: nonsense, as I will show this week. 100% wrong 100% of the time.

RSDSA has long clung to the SNS view of this disease. The quote you make is their attempt to keep the nerve damage idea alive. They obviously know what IRI is, and are just as obviously distorting the facts to prove a false claim.

The nerves are getting chemical pain messages from oxygen and nutrient deprived cells, which they pass on to the brain. They are also sending pain messages to the brain because they aren't getting enough O2 or nutrients. They can only communicate with the brain by sending pain messages.

One could, I suppose, argue that pain messages from pain sensory cells are abnormal, but they are a response to an abnormal condition (oxygen deprivation), so they aren't abnormally firing after all. Just telling the brain: Houston, we have a problem

Where does the immune system fit in? IRI begins with the immune response to trauma; a response that goes out of control instead of ending after no threat is discovered.

The entire IRI process has been documented by dozens of researchers under strict, scientific protocols. This mishmash from RSDSA is not the result of research. It comes purely from the imaginations of the authors.

BTW, absence of proof is not proof of absence. (I'm not sure exactly what that means, but it sounds neat). I'm guessing it means that just because you can't prove something (like nerve damage in RSD), it doesn't mean you have proved there isn't nerve damage.

Experts in RSD are fond of saying things like that because there is no published research linking nerve damage to RSD; nor is there any neurological test that can demonstrate abnormal nerve activity in RSD. No evidence of nerve damage in RSD but almost 100% agreement that it exists. 100% wrong 100% of the time.

I can't prove that GSE prevents symptom migration. I can, and have, offered my experience in previous posts at BT, all of which are gone now.

Basically, after studying the research into IRI, it seemed more likely to me that this is an IRI than a nerve injury. One of the things I learned during my review of the research was that IRI from surgeries could be prevented simply by applying vitamin E (an antioxidant) to the wound site.

My RSD had already migrated to my right foot by the time I learned this and decided to begin taking GSE, a more powerful antioxidant. Since I began taking GSE in early 1998, I have not experienced any symptom migration.

I stopped taking GSE twice: once deliberately, deciding to rely on the topical antioxidant DMSO instead; one I was so (literally) distraught over personal issues that I forgot to take any for several days.

Both times, within days of stopping, I began to experience the mild sunburn pain of inflammation over 100% of both arms and both legs. After resuming GSE, these symptoms completely subsided.

I can't prove that these signs of inflammation would have led to RSD, but I know that the disease begins with the red warm skin of inflammation, then develops into the cold, blue to purplish color of cyanosis. That was enough to convince me, and I hope it will be enough to convince others.

Some members have told me they began taking GSE after reading my posts. None have reported any symptom migration. That may change now that I've mentioned it. We will have to see.

Finally, I not only welcome questions, I have been known to beg for them. I don't get many. In fact, it is often true that my name as the last to reply to a thread is the kiss of death to that thread. No more replies; it simply falls off the page.

I have been discouraged by this more than once; feeling that no one is really interested. I bounce back, though. People may not read what I write, but I continue writing about RSD.

There are times I wish some evidence would arise that would prove me completely wrong. Then I could stop working on an article I have never been able limit to under 2500 words and start watching Days of Our Lives (is that still on?).

This post is probably more than 2500 words, and doubtless there are many who long for the days when I was too weak to write anything close to that number...Vic

it is very interesting.

Vicc have you considered the portable HBOT chambers?
I know that there are some in the US. Then that would remove the travelling.

I can't belive most HBOT techs in the US aren't trained - where I used to go in the UK was very particular about a) who went and b) had very high levels of training...... I am glad I went but it didn't do anything magic for my RSD despite about 40 or 50 dives over a couple of months. However, it did heal my skin up (which is now re-infected)... so it definetly did something.

Thanks

Rxxx

Vicc,
The HBOT was hell for me. It made the RSD worse on top of my oxygen levels being a problem. Roz

RSD newbie here...can I ask what GSE is?

oops!

I usually use the word, followed by the abbreviation, but this time I didn't.

GSE is grape seed extract, an antioxidant. There are others, most prominantly pycnogonel, but I prefer grape seed to pine bark, besides, both do the same thing but GSE is cheaper and more widely available...Vic

Thanks so much Vicc.

I also sent you a PM with some questions did you see it?

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