Friday, August 8, 2008


I want to make one thing perfectly clear ... 

I am not a croo ..

on no, wait.

I did not sleep with that wom ...

nope, that's not it either.

Oh yeah.

I wanted to say that I hope there is no confusion about my purpose with this blog. I talked to someone today who felt that it was only about one person's journey with HBOT. That many people who read this would probably not understand the overall message that I was trying to convey. I was surprised because I thought I had come across with my goals fairly well. 

I hope that in my writings I have shared much more than that. 

My purposes in doing the blog were many. Among them;

1) Open up the world of Hyperbaric Oxygen Therapy to the CRPS Community.

2) Share as much of the vast amount of information available on HBOT as I could; articles, studies, websites, clinics, etc. as I went through the weeks of therapy.

3) Try to answer questions patients/loved ones had who were considering HBOT, were going through HBOT, or maybe had gone through it in the past.

4) Explain from a first-person viewpoint what it was like to experience the therapy, what the side effects were, what to expect along the way, what if any supplements were recommended to take to enhance its' effectiveness, what a dive was like, how to prepare for the days/weeks when the going got tough, etc.

If I only succeeded in making it appear as "one-person's experience" and nothing else, then I have failed. If I have not gotten across the point that every patient's treatment may be different, every experience, while following similar patterns, many be different, then I have failed.  If I did not get across the point that my own personal treatment must be looked upon in the aggregate rather than what each individual day was like, then I have failed. 

I hope I have not. I hope I have been able to move the discussion forward. Time will judge :)

There are some other tidbits I wanted to share in response to questions I have received in the past few days. 

HBO therapy affects the body in other ways. For example, it enhances the function of white blood cells, which fight infection. This is important because increasing the efficiency of white blood cells through the use of HBO therapy has a positive effect on the immune system. Also, HBO therapy has a positive effect on peripheral blood vessels and causes the formation of new capillaries, which are tiny, thin-walled blood vessels. Such formations effectively increase blood flow to the body's extremities (your hands and feet)

The above is from CHICO HYPERBARIC website

I have talked a lot about what the monoplace (single person) chambers are like, because that is what my personal experience is. I have also tried to throw in some information on the other types as well. But while looking for some information in response to a question I received, I found this great description. 

When a patient enters the hyperbaric chamber they sit in a chair for the duration of the treatment. If a patient is unable to sit in a chair then a gurney can be used. When the chamber door is closed compression takes place with standard air, or the air we normally breathe. It takes 10 to 15 minutes to reach the desired pressure, equivalent to a depth of up to 60 feet of sea water. Once the desired pressure is reached a large, see-through hood is placed over the patient's head and 100 percent oxygen begins to flow into the hood. The patient breathes 100 percent oxygen for the prescribed amount of time, usually 60 to 90 minutes depending on the condition being treated. During treatment the patient can watch TV, read a book or just relax. 

After the prescribed amount of time has elapsed the flow of 100 percent oxygen is stopped and the hood is removed. The chamber is decompressed, or returned to the same pressure that exists outside the chamber, which takes 10 to 15 minutes. The patient then leaves the treatment environment. If a patient is receiving two treatments a day the second treatment follows the first after a 3 to 4 hour break outside the chamber. 

A patient receiving one treatment per day will spend about two hours at the treatment facility in either the morning or afternoon. A patient receiving two treatments per day will spend about four hours per day at the facility. The Chico Hyperbaric Center offers treatments Monday through Friday; treatments are not normally scheduled on weekends. 

Someone asked me about HBO's affects on the vasoconstriction problems of CRPS. This is an excellent question and the answer I got, when I first looked into this, is what gave me my "lightbulb moment". It is what first opened my eyes to the possibilities and made me seriously look into the existing research. 

At sea level, our lungs absorb a certain amount of oxygen molecules from the air. When descending to lower altitudes (below sea level), the pressure is greater (above 1ATA) and now the lungs more easily absorb the compressed oxygen molecules in the air.  ... During a hyperbaric “dive” the fluids and tissues of the body receive an infusion of readily available oxygen. In fact, even cells and areas of the body with limited circulation become saturated in oxygen. The effect is an uptake of oxygen in the blood, plasma cerebral-spinal fluids, and tissues. In addition, the vaso-constrictive nature of hyperbaric therapy has an added effect of reducing inflammation and edema. (From Wisconsin Hyperbarics)

So let me close with this thought;

"Hyperbaric oxygen adhering to all the gas laws of physics delivers free molecular oxygen to the cells for immediate metabolic use without energy exchange, even with compromised circulation" -- Edward Teller PhD (Father of the Hydrogen Bomb)

The late Dr. Edward Teller (1908-2004), one of the great geniuses of our century, served as Director Emeritus of the Board of Advisors of the Ocean Hyperbaric Neurologic Center.

Peace, Keith


Wednesday, August 6, 2008


Sometimes a pickle ... is just a pickle ...  

Many of us have gone to the Doctor and tried to explain to him, or her, exactly where our pain is. Sometimes there is an simple explanation ...

A man goes to the doctor and says to the doctor:
"It hurts when I press here" (pressing his side)
"And when I press here" (pressing the other side)
"And here" (his leg)
"And here, here and here" (his other leg, and both arms)

So the doctor examined him all over and finally discovered what was wrong... 

"You've got a broken finger! 

and then there is our disease. 

I hurt my foot. Now my ankle hurts too. It burns. Now I think my other foot is burning too. And it feels like my bones are being crushed, and it my foot is freezing all the time. yeah, I know I said it burns, but it is freezing too. Oh yeah, I forgot things a lot. And I have trouble concentrating. And my foot and leg keep having muscle spasms and these little red dots are appearing. Sometimes it feels like I have these creepy crawlies all over my foot and leg. And it seems swollen. Oh yeah, every time a breeze blows over it I scream. Did I mention that? And loud noises make it worse too. Am I depressed? Wouldn't you be? 

So, what is it? 

Now do you see why it is so hard for Drs to diagnose?

At the same time, patients who educate themselves about CRPS, and learn about these symptoms, see how obvious the set of symptoms are and think, "If someone came to me with these symptoms I would be able to spot CRPS right away!" Once you know what a kumquat looks like, they are easy to spot. 

For more information on the SYMPTOMS OF CRPS, drop by the American RSDHope website. 

Someone asked about the various MEDICATIONS USED TO TREAT CRPS, we have a section on the website for that. 

My latest flare has slowly quieted down, especially after todays HBO session. Today we did the shallower depth for 90 minutes, yesterday we went to the deeper depth (45 feet) for 90 minutes. 

Someone asked what the typical treatment depth was for CRPS. That is 45 feet, or 2.4 atm's. 

Something interesting I have noticed. I feel so rejuvenated after I get out of the chamber, even though i am tired. It is such a positive feeling. Hard to explain. Maybe someone else who has been through it or is going through it can explain it better than I.

I got an email from "Janice" and she shared - "I am on my 5th treatment and I am already seeng a big  difference.My stiff dystonic hands are starting to move much more freely and my dystonic feet /toes do not look at attention(my terminology). They seem more relaxed and they do not hurt at all. My calves are not permanently cold YAY!"

That is fantastic! Thanks for sharing Janice! 

She also mentioned that her clinic does not take patients to the 2.4 atm depth, not for CRPS or for any disease. I was a little surprised at that since most clinics I have talked with, and patients, it seems that that is the standard treatment depth for CRPS patients. But every clinic is entitled to treat their own way :) 

She seems to be having success right? Hopefully Janice will keep us informed as she approaches remission.

Short blog today. Time for dinner and then a Red Sox game. I am taking the night off! 

Tune in tomorrow :)

Peace, Keith

PS - Payback is a , well, a pain in the butt.

The CEO of a large HMO dies and goes to heaven. St. Peter shows him to a lovely villa, wonderful music, great views, full staff of servants, gourmet meals, etc.

The CEO says, "This is terrific!"

"Don't get too comfortable," says St. Peter. "You're only approved for a three-day stay."

Tuesday, August 5, 2008

HYPERBARIC OXYGEN AND CRPS -- If a CRPS Patient screams in the woods, and no one is around to hear it, does he still make a sound???

There's a little black spot on the sun today
It's the same old thing as yesterday
There's a black hat caught in a high tree top
There's a flag-pole rag and the wind won't stop

I have stood here before inside the pouring rain
With the world turning circles running 'round my brain
I guess I'm always hoping that you'll end this reign
But it's my destiny to be the king of pain

---- Music and lyrics by Sting and the Police - "King Of Pain"

I talked to a 13 year old girl recently who has been dealing with CRPS pain for over a year. She has it in her foot and leg. Her whole life has been turned upside down due to this disease. She had to leave school, stop cheerleading, most of her friends have stopped calling and stopping by, and she spends every day in agonizing pain. 

She asked me, will she ever get better? Will there ever come a time when she isn't in pain? 

None of the Doctors her parents have brought her to have helped. Nothing they have done has helped; blocks, medications, EMG's, etc. Some of these things actually made her worse, especially the EMG (as it will most often do for CRPS patients). 

As a matter of fact, her Doctors have told her parents that because nothing has helped her she probably doesn't really have anything medically wrong with her; that her problems are psychological in origin. Oh sure he says, she has spasms, her skins changes color, and she is exhibiting signs of pain. But he insists that she is causing these changes, causing these symptoms, to occur and if she wanted to she could stop them just as easily. She "must be doing it for attention", or there are "problems in the home", or a few other things he tossed out. 

I remember when she first wrote to me, shortly after she started having symptoms. Her case escalated in the classic way and her symptoms are classic. 

The biggest problem now comes in that her parents are believing the Doctor instead of their daughter. And the months tick by without her getting the help she desperately needs. She has educated herself via the internet, going to our site and a couple of others and learning all she can about the true facts of this disease; description, signs, symptoms, stages, and so much more that is available and tried to share some of it with her Dr; to no avail. 

She feels confused, alone, and doesn't know where to turn. She is a member of a strong on-line group and that has greatly helped her but she can't live there. We all need someone to believe in us, it should be those closest to us but unfortunately, especially with this disease, that isn't always the case. 

Why have I shared this story with you? Because there are a few things I share with people when I talk with groups on this topic (well more than a few but a few that I try and stress);

1) Never compare your pain with someone else's.

2) The pain IS in your head,(that is where we register pain) but you aren't making it up!

3) You aren't alone anymore. 

4) Don't sweat the petty stuff ... and don't pet the sweaty stuff. 

Don't feel you have to battle this disease, or any chronic pain disease, by yourself. There are support groups and chat-rooms, and listserv's all over the internet. Or look for a local support group to belong to, to help grow, to share your energy with. Just do your due diligence to ensure they end up being a positive influence on you and others. And if you are in remission or heading there ... don't pull away from these groups. Now is when the other patients need to hear from you the most. 

So the next time a Dr or a friend or anyone says "Your pain is all in your head", say "OF COURSE IT IS SILLY! For that is where we register everything; pain, happiness, sadness, taste, you name it!"  Then walk away with your head held high. Or roll away, or limp away, but --- away with you! Leaving them with a confused look on their faces and you smiling. 

I have stood here before inside the pouring rain
With the world turning circles running 'round my brain
I guess I'm always hoping that you'll end this reign
But it's my destiny to be the king of pain

There's a king on a throne with his eyes torn out
There's a blind man looking for a shadow of doubt
There's a rich man sleeping on a golden bed
There's a skeleton choking on a crust of bread

King of pain

So, how is the HBOT going?

On Sunday I had a bit of a setback. The burning pain in my feet, hands, lower legs, and arms came screaming at me and went through the roof! I realize, in talking with other patients that this can happen during treatment but boy-o, was it tough. It felt like I was run over by a truck on Sunday and then a smaller truck on Monday. 

Today is a little better. I had a treatment this morning and the burning pain is much lower again in my hands and right foot (that left foot is stubborn). What also got raised on Sunday was the crushing pain ( a common CRPS symptom) in my legs, which has thankfully subsided, and that most horrible of feelings; what I like to call "walking on broken glass". It feels like my heels are full of pieces of broken glass and every time I place my feet on the ground those shards slice upward. I haven't had those feelings for many weeks and so it was ugly having them back. 

My eyes, which were the first place I ever got CRPS, have always been the worst pain for me. I haven't met too many other people who have it in their eyes but I have had a lot of people ask me what it is like having CRPS, chiefly burning pain, in the eyes. 

This is where I can absolutely relate to those patients who have talked about how they wanted to have their arm or leg amputated. Their pain was that intense, that horrible. Of course nowadays we all realize that doing so would simply lead to phantom limb pain, no limb, and the patient still having CRPS. But early on in my disease, back about 30 years, they looked into the idea of some sort of an eye transplant. Not because of the CRPS (they hadn't diagnosed it yet) but because of the poor vision. They thought the eye disease I had, that originally they believed was the cause of the pain, might be eliminated if they switched out the eyes. We never did it of course although I did end up with a corneal transplant, which didn't help either the vision or the pain. 

When I was younger and they were still confused about what was happening what they were convinced of was that I was exaggerating the pain. There was no reason for the kind of eye pain I was describing so I was either making it up or possibly taking drugs or seeking attention or maybe a combination of the above. I was fortunate in that I had parents who believed in me absolutely. 

So, what does it feel like? The burning in the eyes?

It feels like having two hot burning coals where your eyes should be. Like there are giant flames shooting out of my eyes all the time and I am confused why no one else can see them. If I could only rip them out of my head, I wouldn't hurt so much. I need to constantly douse them with water to keep them moist but it is like trying to put out a forest fire with a squirt gun. (part of that is because I had my tear ducts sewn shut many years ago - not because I didn't want to cry but due to another issue). Bright lights hurt them, a slight breeze causes them pain, if I am tired they burn more, when I am stressed they are the first area of my CRPS that gets increased.

The bottom line is, although I have CRPS full body (although less so currently due to the Hyperbaric Oxygen Therapy thankfully), my eyes are definitely the most painful area of my body.

When I went into nearly complete remission in 2003 and again in 2007, the part of my body that was not affected by the ketamine was my eyes. For that treatment, as with HBOT, it is "what was affected first will go way last". So even though many patients report a positive change in their vision during HBO Therapy, I am not anticipating any change in the eye pain until nearer the end. But I am praying and hoping to be surprised sooner!

In spite of Sunday, in spite of that spike in pain, I won't give up. I did take off Monday from HBOT, hence no Blog yesterday, but I was in no shape to drive. But I was right back at it today. 

I am too stubborn to give up!

Peace, Keith