Hi again Ali,

The reason for this delayed response is that I have written many drafts but none of them were adequate. You are 13, and I expect to be criticized for being blunt in my honesty in light of your age, but I couldn’t lie to my kids about Santa Claus, and I can’t lie to you (even by silence), in response to issues you addressed specifically to me. I’m not going to talk gloom and doom, but I am going to tell you what I believe is true.

I’ll begin with a simple question: Do you think I should see a different PM doctor at a different hospital??? Before asking that question, you said: I am getting sick of people accusing me of something that isn't true. Should you find a doctor you can trust, and who will believe you; and the evidence right in front of him? Absolutely.

Although I talk with an air of certainty when I’m sure I know what I’m talking about, but I also admit that there is much I don’t know about the RSD process. I’m pretty sure that children (yup, you’re still a kid), have a much better chance for remission than adults. I’m still hopeful your youth will see you through this ordeal, but that is a hope, not a promise. You must prepare yourself for a lengthy battle against RSD, and that means sometimes accommodating to the disease.

My RSD is mild, but I have a lot of experience fighting the consequences of disabling injuries, and my experience contradicts much of what you’ve been told; both by medical professionals and people here at NT. You will have to judge for yourself whether my experience is relevant here.

After two badly botched back surgeries in 1979, I could not walk 100 feet while using a cane before pain made further effort impossible. I fought back by forcing myself to walk until I simply couldn’t take another step, and after 13 years I was able to manage as many as 400 feet. I refused to surrender to a wheelchair, and I think I regret that decision most.

I was a truck driver before my injury, and some of the most enjoyable aspects of that job included seeing more of this country than most people ever will; meeting all kinds of people, and visiting countless art galleries, museums and amusement parks.

Travel became out of the question, but during those 13 years I visited only one art gallery and went to Disneyland once (using a rented wheel chair). I denied my self the enormous pleasure of doing things with my kids (before my injury they also went to museums, and to beaches and parks with the best playgrounds, because I was afraid of becoming dependent upon a chair. My wife still took them, but I didn't get to see them laugh and have fun.

Well, after completing college I had to use a wheelchair in order to work, and I can tell you that if I were given the opportunity to walk again I would show my gratitude to that chair for the opportunities it allowed me, by abandoning it without a backward glance. Wheelchairs are inconvenient, and in all but a few large cities facing a curb may as well be facing a mountain.

Nobody would choose rolling over riding: Ever. I hope you won’t listen to anyone who tells you that using a wheelchair when two minutes of walking hurts so much, is surrendering. It’s an accommodation to a fact you can’t control. And it’s not a matter of one or the other: You can, and you will, continue to walk as much as possible.

You may learn that the rest afforded by the chair will allow you to walk more when you want to do something that requires walking; pain and the tissue damage it represents is cumulative, it reduces your ability to walk when walking is most important.

Right now you are trying to walk and only getting worse. I hope you will limit trying to force your body to do something it can’t do, and focus on increasing distance and duration to that which is tolerable. I especially hope that you won’t needlessly limit you experiences by staying at home when a wheel chair can take you places.

Now, about your color changes: You doctor knows that the hypoxia they represent will not kill you – even the black skin color that would otherwise be considered an emergency. In every other instance I know of, that color would mean gangrene is imminent, but for some reason in RSD it doesn’t.

It does mean, however, that tissue damage is accelerated. Some of that damage is only temporary, the body does heal itself whenever it can, but permanent damage is also taking place.

Several years ago I spoke with the mother of a 14 year old girl with RSD. Her daughter was unable to do anything because of the pain, and the skin on her back and the back of her shoulder was black. The mother told me she couldn’t watch this happen to her child any more. She had decided to kill herself, even though she knew the damage it would do to her child. The last time I talked to that woman, Jen wasn’t available to come to the phone; she was outside rollerblading. She had permanently lost some function in her arm and shoulder, but she was rollerblading.

I will be accused of shamelessly using this situation to promote my hypothesis, and I am. Jen underwent HBO and she got better; should I keep that secret from you? Or from anyone else? I think of them a lot, and wonder whether Jen later relapsed; but I know she improved for a while, and that the improvement was the direct result of HBO.

(I have learned a great deal in the intervening years. I learned that that the regimen Jen underwent could have left her worse rather than better, and I discuss the reasons why in some of my posts on the thread Vascular Issues, but my point here is that something had to be done to mitigate the damage from the severe hypoxia represented by her skin color).

You and your parents don’t have to decide whether my hypothesis will lead to remission from RSD, you only need to know that HBO is the treatment of choice for tissue hypoxia and mandated when skin color is black, and that if left untreated, some permanent damage will result. Anyone who tells you that this black skin color won’t cause permanent damage is absolutely wrong.

I don’t know how things are done in G.B., but in this country anyone who wants to present for HBO can get it (if they have the money). Chamber operators may tell someone with RSD that they need multiple hours, but they will sell one hour because they know if they don’t, someone else will.

Your doctor should not be willing to tolerate this color. He should be fighting to find you a space in a chamber. If he won’t, I hope you and your parents will find a way.

I’m not suggesting a series of HBO interventions, especially the way it’s delivered today: The risk of catastrophic relapse and even coming out worse is too great. I’m urging one hour in order to limit the permanent damage that always results from severe tissue hypoxia. It may take more than one hour. I don’t know how much permanent damage can occur, but I know that some of it is preventable.

I’m not speaking without scientific support: Except for RSD, where they know gangrene hasn’t been reported (to my knowledge), black skin color would result in an immediate test for microvascular oxygenation, followed by an immediate trip into the nearest HBO chamber.

Get rid of that black skin color, and then take your time studying and discussing my hypothesis…Vic