HYPERBARIC OXYGEN THERAPY - PUTTING CRPS INTO REMISSION?

Well, it is still too early to tell what the end result will be but it sure has gotten a foot in the door. 

As I mentioned with quite some excitement yesterday the burning in my hands went down to about a one last night. By the morning it went up a little to about a 1.5 or a 2. Still amazing. I am anticipating it will continue to fall. The left foot continues to be about an 8, the right foot has dropped to about a 5, the eyes are still very strong and my ears as well. But, considering I started out with burning almost everywhere, THAT AIN'T VERY MUCH :)

I have noticed that my allodynia hasn't gone down very much yet. Some of the past patients have mentioned they saw a big difference around the 30 to 35 treatment mark. 

So before I get to your questions, here is mine for you.

For those of you who were helped by HBOT, did you have your allodynia decrease as well, and if so, when did that occur? 

Also, I have only heard from four of you who had the varied depth treatment. Are there any others who had their HBO therapy changed after the 25  or so treatment? In other words, where they altered the depth, maybe day to day, going from shallow one day to deep the next? If so, what were the results?

Ok, now here are your questions. 

Someone had written to me asking if it were possible for someone with a spinal column stimulator to have HBOT?

The answer is yes. As a matter of fact I have a link for an HBOT study that was done on patients who had SCS units. 

Someone else asked, "Why does HBOT work?" 

On the Hi-Tech Hyperbaric Medical Center website, it states;

"Nature has dictated that healing cannot take place without appropriate oxygen levels in the body’s tissues. In many cases, such as those involving circulatory problems, Strokes, anoxic brain injury, and near drowning just to name a few, adequate oxygen cannot reach the damaged area and therefore the body’s natural healing process fails to function properly.Oxygen given with increased pressure can correct many serious health problems. To provide this increased pressure one must be within a pressurized room, a Hyperbaric Oxygen Chamber. Oxygen, given at normal atmospheric pressure is insufficient to raise tissue oxygen levels. The answer is to deliver oxygen with a slight increase in pressure with a chamber to raise the oxygen tension above the normal red blood cell saturation.

Interesting.

Also, it was asked whether you could continue your HBOT if you develop a col or the flu. This is best addressed by your HBO Doctor but the main problem here would be the inability to clear your ears. If you can't clear your ears you won't be able to descend. 

Another question was "How do I know that my HBO Technician is properly trained?"

In 1991 the National Board of Diving and Hyperbaric Medical Technology (NBDHMT) introduced a standard certification program for all hyperbaric technicians.

And someone asked for more testimonials besides the ones on Dr Spiegel's site and the Rapid Recovery Hyperbaric site. Here is yet one more site with more testimonials of various diseases treated with HBOT. 

Lastly, if anyone is reading this who lives in the Tampa Bay/Palm Harbor area, or happens to be visiting the area, our local CRPS support group will be holding a pool party this Saturday, August 2nd, in Tampa Bay. It should be fun and we will be having a cook-out as well. C'mon over! I promise to try very hard to stay awake for the whole afternoon!

Take care guys, and remember, hug your caregiver tonight!

Peace, Keith 

OXYGEN IS A GAS!

Humor is one of the best ways to deal with chronic pain. Laughing triggers endorphins and that helps battle pain. 

So hear are a few little tidbits for you;

 

Science Exam Quotes (from 11 year olds) 

_{Laurie Sale/Norman Josephs}

* "Water is composed of two gins, Oxygin and Hydrogin. Oxygin is pure gin. Hydrogin is gin and water."
* "When you breath, you inspire. When you do not breath, you expire."
* "Three kinds of blood vessels are arteries, vanes and caterpillars."
* "Blood flows down one leg and up the other."

So, what is the latest update? 

Fantastic news. After this mornings treatment, I noticed the burning in my hands has decreased to only about 10% !!!!!!!!!!!  That is nothing! So exciting!!!!

The allodynia is still quite strong, as it is in in my feet, legs, and arms still and the burning is still strong in my left foot and a little less so in my right foot. But one step at a time. This is so amazing. 

After my discussion the other day of the Third Symptom of CRPS, Spasms in the blood vessels and muscles of the extremities, I received a few emails. Some saying they were grateful to hear they weren't the only ones who experienced those things and some asking what the other three symptoms were. I even got two asking if you needed to have all four symptoms in order to have a diagnosis.

So let me try and answer all of those here :)

First, the FOUR MAIN SYMPTOMS OF CRPS are;

1) Constant Chronic Burning Pain (includes allodynia - extreme sensitivity to touch, sound, vibration, 

2) Inflammation - This can affect the appearance of the skin, bruising, mottling, etc.

3) Spasms in blood vessels and muscles of the extremities

4) Insomnia and Emotional disturbance (includes major changes to the limbic system; among them are short-term memory loss, concentration difficulties, inability to find the right word, depression, etc.)

 

There are other CRPS symptoms of course. 

In answer to the question about whether you need to have all four symptoms; no. But it is unusual for a patient not to have at least three of the four. Not every patient has the constant burning pain but probably 85% of patients do. 

On another note, we recently added an article from TIMES ONLINE called "IS PAIN ALL IN THE MIND?"

It is an interesting article but I think it falls far short of what the typical chronic pain patient deals with. It deals more with what I term "simple pain". But check it out and decide for yourself.

HBOT CLINICS - Someone asked me for a list of clinics around the country. If you visit the links in our HBOT section you can find some of the clinics there and most of them have a list of clinics. For example; the AZ HBO Clinic has a LISTING OF HBOT CLINICS 

Also, someone asked what conditions are covered for HBOT and which aren't covered by are treated with HBOT.

On the RAPID RECOVERY HYPERBARIC website, there is a great page that lists these two things right next to each other. Check it out!

Ok guys, that is it for today. Check back tomorrow!

peace, Keith 

HYPERBARIC OXYGEN THERAPY - WEEK FIVE

I began my fifth week of HBOT today. 

So what changes have I noticed? 

My CRPS, which was full body at the start of this process, seems to be mainly in my feet, hands, eyes, ears, and some in the lower legs and a little in the arms, at this point. 

Now a "typical" CRPS patient might look at having CRPS in their feet, hands, etc. as being pretty horrible. As well they should. But for those of us with full-body or "systemic" CRPS, that is actually a big improvement. A cause for celebration. 

Celebrations are all relative, as the joke goes ... 

My wife and I were sitting at a table at my high school reunion, and I kept staring at a drunken lady swigging her drink as she sat alone at a nearby table. 

My wife asked, 'Do you know her?' 

 'Yes,' I sighed,  'She's my old girlfriend.  I understand she took to drinking right after we split up those many years ago, and I hear she hasn't been sober since.' 

'My God!' says my wife, 'Who would think a person could go on celebrating that long?' 

And that's when the fight started....

Hmmm.  lol 

Anyway ... 

I was speaking at a meeting for a new CRPS group in Orlando on Saturday and someone there asked me "What is it like to have pain everywhere? Is it really head-to-toe?"

I know she hesitated asking it and even said, "if it is too personal I apologize" or something to that effect. It is a question I have been asked many times. Consider that only about 8% of all patients end up with systemic CRPS and that most patients haven't spoken to or met  many other patients, it isn't unusual for most to have never met someone with full body. I don't mind sharing my story at all, it is part of what I consider my mission, how I enjoy helping other patients and their loved ones. 

So now my pain isn't everywhere.  Right now , as I mentioned, my pain has "localized", meaning instead of being centered in the brain it seems to have gone out to the extremities and the pain is now being felt where it is supposed to be felt, in the extremities themselves. It is as if the nerves are re-learning the correct pathways again, are re-training themselves to function normally again. Maybe I am oversimplifying it but that is what it seems to me. 

I did want to answer some questions posed to me over the weekend by either patients considering the treatment or those undergoing it now.

1) Does HBOT make you tired? Absolutely. It will make you extremely tired, as if you ran a marathon. Most patients take a "hyperbaric nap" after their treatment and then sleep well again in the evening often reestablishing their REM sleep patterns. 

2) Is it normal that you feel really hungry? Yes. Your body is re-building pathways, generating new blood vessels, growing tissue, etc. I am not sure that is why but it makes sense to me. Either way, yes you will be very hungry and need to eat, especially right after your treatment. It is very important to eat fruit or something along those lines immediately following your treatment. That will also help to prevent those annoying little headaches that can sometime crop up.

3) Is ear pain a sign I can't have more treatments? Ear pain is a serious issue with regards to HBOT. Because you are constantly descending and ascending you have to use your ears as "balancers" so to speak, they allow you to equalize the pressure as you descend and ascend. There is a small percentage of patients who develop ear issues, these can be serious. If you experience ear pain, let the tech and/or Dr know right away. Don't hide this fact thinking it will go away. 

Oh oh, ok. guys. we have another one of the many thunderstorms that role through Florida this time of year. Need to get off the computer. 

If you have questions, send them to me at keeths@mac.com or leave a comment on the blog and I will try and find the answer for you.

Thanks for listening. 

Kei --- arrrrrhhhhhhh

ooops. That was a close one!

Today, try to make a difference in someone's life

Today's blog is quite different. It is not about HBOT. It is about what I have been thinking about while I have been in the chamber this week, when people ask me why I am doing it, besides the obvious reasons.

After all, I have done the low-dose ketamine, and blocks, and many other treatments. Most treatments except invasive treatments. Why do I keep doing them? Besides the prospect of going into remission, which I have achieved in the past and while glorious is also not permanent yet. I get asked this question a lot. While getting ready for a meeting of CRPS patients in Orlando today, I thought about it some more. Here are some of those thoughts.

What will you do today that will enhance someone's life? 

What piece of information will you share that could help re-shape how someone looks at their life, their pain, or simply enable them to better approach this day?

What kind words can you offer a friend or a total stranger that could have an impact far beyond the effort it takes to impart them? 

Success should be less about what we personally accomplish and more about what we enable others to achieve. Not how high we climb, but how high we encourage others to dream. 

When you depart this world will they say;

"He was a man who made a lot of money, he was a success!"  

or

"He was a man who touched many lives, his presence will be sorely missed."

My father was such a man, Bob Orsini. His presence filled the room and his smile lit up every face there. He always had a kind word for you and he had time for everyone. I think he was at his happiest when he was with his family but a close second was when he was with a group of people, any group. 

Bob, or Dad O as many in the RSD community knew him, helped many RSD/CRPS patients; as has Mom O, Lynne. I think of both of them and the hours upon hours they put in, and Lynne still puts in, helping patients and their loved ones deal with this disease every day. 

Why these thoughts? 

When you lie in these HBO chamber for hours each week, even with the TV going in the background, you have a lot of time to think. I think a lot about my Dad and hope that he is proud of the work we are still doing with American RSDHope. It is yet another reason why I am doing what I am doing with the blog and the HBOT. To try and educate the community, patients, and their loved ones. Our family has dedicated much of our lives to this cause for the last 15 years and we have lived with this disease nearly three and a half decades. 

We are not martyrs by any means. There are countless other families and individuals all across the globe as dedicated, reaching out, doing everything they can to further the cause. We have been very blessed with success, we have gotten so much more out of the whole experience than we have put in, and met some amazing and courageous people along the way. One day we hope that we, and the other organizations, will be so successful that we will no longer need to exist. A cure will be found, and there will be no more CRPS!

So what can you, one person, do? 

You can reach out, over, down, and help someone else. Put aside your own pain for a moment and think about how you might be able to encourage or educate someone else. 

I am not saying to stop thinking about your pain and it will go away. You have been told that before and as they say, "How's that working out for ya?" It works about as well as trying to drain the ocean with a tea strainer. 

Forgetting about something that permeates everything you do, every second of your day, awake or asleep, is next to impossible and is usually only encouraged by people who have never tried to do it.

Sort of  like putting a smoker in a room, surrounding her with cigarettes, and telling her to stop thinking about smoking. Sure. No problem.

I am not asking you to stop thinking about your pain, just asking you to put it on the back burner. Instead, think about what else you can do. It doesn't have to be anything big. Do you know of another patient who is feeling down? Having a difficult time and could use a little encouragement, maybe a card or a phone call to let them know they aren't in the fight alone? Or maybe share a few jokes you found on the internet, or a humorous story, by calling them. Don't just forward it to their email box, that takes no effort. Maybe you came across an article that you know might help someone; a friend or a loved one.

It is also a good thing to remember those who take care of us. Take a few minutes to drop a line, letter, or an email to your caregiver, nurse, or Doctor. Let them know you appreciate the extra care and attention they give you. When was the last time you did that? You might be surprised how far these simple thank-you's go. They have a cascading effect.

Let people know you believe in them, ask them how you can help them achieve their goals. we are always so quick nowadays to ask others for favors but far slower to ask people how we can help them. 

Not everything we do in life has to be about us. We have to work with others in mind because everything we do affects other people in some way. the great thing is, WE get to choose if it is for the better or the worse. What is your choice today? 

Just a few random thoughts, from my hyperbaric chamber this week :)

peace and freedom from pain, it is all we seek,

Keith 

HYPERBARIC OXYGEN TREATMENT - END OF WEEK FOUR

So today ends my fourth week of HBO Therapy. Actually Monday since we missed one day due to a holiday. After today that will be roughly 27 or so hours of HBOT, actually therapy at treatment depth (not counting the time it takes to descend and ascend).

Which brings me to a question someone asked me last week that I wasn't able to get to. 

What exactly does the dive entail? What is it like? How do you prepare? 

On the website for the Hyperbaric Oxygen Clinic of Sacramento website it explains this well;

The treatment process may be modified for different types of chambers, either the monoplace or the multi-place chamber. In the monoplace chamber, one person at a time is treated, whereas in the multiplace chamber where more than one patient is treated at the same time, with an attendant present in the chamber.  (I am being treated in a monoplace chamber)

Only 100% cotton gown, which is supplied, is permitted in the chamber. 

(This varies by clinic. At all clinics what you wear needs to be 100% cotton only but in some you can bring your own cotton clothing. For instance, I wear shorts and a tank top usually. )

No cosmetics, perfumes, deodorants, hair preparations, wigs or jewelry are worn during the treatments. Patients are advised not to take carbonated drinks or alcohol for at least four hours prior to each treatment, and that they should give up smoking and tobacco products, as these interfere with the body's ability to transport oxygen. 

Once inside the chamber, the patient will be experience the changing pressure which is the same as that felt in an airplane when ascending or landing. Prior to the treatment, the patient is instructed in techniques of equalizing the ear/sinus pressure by yawning, swallowing, or attempting to blow through the nose while holding it shut. During the treatment the individual will be breathing 100% oxygen, dispersing oxygen into the blood plasma and delivering up to 15 times as much oxygen to tissues as would breathing room air. The treatment length is 60 - 90 minutes, depending the diagnosis and the physician's determination of treatment. The acrylic walls allow for the trained technicians to closely monitor the patient, as well as providing comfortable viewing out of the chamber. From inside the chamber the patient can always communicate with the attending technician via intercom, as well as watch TV, listen to music, or just take a nap.

Yesterday, after my session, Jason Bingham came by Dr Spiegel's clinic for a tour. many of you have been to Jason's RSD BLOGSPOT where he shares all sorts of articles on RSD. He got to see the many chambers available there. 

So what is my latest update?

I have had a pretty good week. My full body CRPS seems to be in a serious state of flux. Many of the areas where it once was, it has retreated from and it seems to be concentrating more in the four extremities. It is too soon to really go beyond this description but we will see how everything feels by around mid-week next week. It does appear to be headed for a significant change right now though, the biggest so far. 

I have also noted a fairly significant change in the frequency and length of the muscle spasms in my arms and legs. I have had, despite some of the best meds, these spasms for many years, especially at night. Most of you probably have as well. Spasms in the muscles and blood vessels are one of the FOUR MAIN SYMPTOMS OF CRPS. It wasn't anything I hadn't learned to deal with but it could be painful at times and it was always annoying and kept me up or woke me up at night. But these past three nights my muscles spasms have pretty much stopped! I was also able to cut back on the medication I take for them without noticing an increase at all!

As I mentioned before, I would be thrilled to go into remission from this treatment but I would be almost as happy to get 50% remission, especially if I was able to cut my medications significantly in the process.  How sick are all of you of dealing with the side effects of the medications? More and more I have been looking to natural remedies where possible to help.

Speaking of which, some of you have asked about vitamins and I thought I had spoken of some here but I will again briefly. 

During the HBOT it is recommended that you take vitamin E and some form of B. Many clinics administer vitamin B injections; some before the treatment and some after. These will help replenish the body and speed healing during treatment. It is also recommended that pain patients as a general rule now seriously look at a few other vitamins/supplements such as; Vitamin D, magnesium, and Fish Oil. Many pain patients are found to be deficient especially in vitamin D.  Another one to look at that helps promote a more restful and healing sleep is melatonin; the fast-acting chewable or sublingual version rather than the caplet or pill.

ok, I am off to my session. Tomorrow I am going to visit the Orlando CRPS group for their first meeting!

Then collapse and sleep most of the weekend :)

peace, Keith 

TREATMENT CONTINUES - BLURRY EYES - HBOT,WHY NOT MORE WIDELY ACCEPTED?

Ok, tried to add a post yesterday but my eyes were blurry again following treatment so I am not sure what it would have ended up looking like and decided I better not chance it. Although I remember in high school reading about a study they did where they filled a room with chimpanzees and gave them all typewriters and by the end of the week they said they had a complete novel just by chance!

Although, looking back, I think that story was told to me a teacher I had who was trying to teach me TYPING at the time. You can probably guess how good I was. 

So how is treatment going? 

Well, I jumped a little too soon feeling I was over the wall, or through it. I am doing better though. I hate to give percentages on improvement or use the pain scale for reasons mentioned before. Plus, my saying I am a "7" has no meaning for anyone else because my 7 could be your 9, or your 5. Plus, this treatment, at this particular point in my treatment, is an up and down thing. One day up, another day a little down. 

I will say a few things though. 

1) I definitely feel like it is helping. 

2) My sleep has improved.

3) I feel like I am at the top of a precipice and am so close to jumping off of the pain hill, so close.

4) even if I don't achieve complete remission at the end of this, I will be thrilled with partial relief, a reduction in meds, better sleep, etc.

5) Everyone needs to remember that I am not a "typical" case. My CRPS is not only systemic it has been around for more than 3 decades so it is heavily entrenched. 

6) Because of what I just stated, I am thinking I need to go beyond 20 treatments if we are going to have a real chance at beating this thing.

I am a little behind in answering some questions posed to me. I will try to catch up this weekend if I can. Bear with me, I will eventually get to them all. 

What is happening right now, besides the blurriness, is something weird but something that is positive and is supposed to happen to those of us with full body CRPS. My pain seems to be extending outward, to the extremities, like a bomb went off in the middle of my body and it forced all my pain outward to my four limbs. 

Now some of you might say, "How is that progress? Having pain in all four limbs?" Well, when you have had it full body for decades, in every part of your body, having the majority of your pain seem to extend to just your limbs, mainly feet and hands, that is a pretty kewl thing!

It has only happened in the last few days and we will have to see what occurs in the next few but it is exciting!

I did want to get to a couple of questions quickly before I went in for my treatment this morning;

1) A Doctor emailed me asking me if this was a viable treatment for his CRPS patients and who would he talk to about it. 

The answer is absolutely yes. For more specific information on CRPS and Hyperbaric Oxygen Therapy check out the link on Doctor Allan Spiegel's website. I would also suggest your talking with him directly Doctor. Before I was treated by him, before I even was thinking of being treated by him, I sat and had a couple of long talkes with him about HBOT; what it was, how it works, and more specifically, why it would work on CRPS patients. I think you will find a talk with him as illuminating as I did. 

You can find his main website, NATIONAL HYPERBARIC OXYGEN THERAPY,  here.

2) What does the chamber look like that I am using? I added an image above, at the top of the blog today. I tried to add it here with the question but I couldn't seem to do that :(

If you don't get the picture in your version, you can see one by going to THIS LINK.  scroll about 1/4 of the way down.

3) Why isn't HBOT more widely accepted?  In an article written by Elmer Cranton, M.D. "IF HYPERBARIC OXYGEN THERAPY IS SO GOOD, WHY IS IT NOT MORE WIDELY ACCPETED?" written in 2001, he said that only about 15% of medical schools have HBO chambers. If Drs don't know about a therapy they obviously won't prescribe it. If they don't prescribe HBOT, there is no incentive for more facilities to be established.

"Therefore there exist very few chambers, despite the potential need and benefit that could otherwise be achieved.  Many of those are dedicated to diving accidents and are not available for other medical conditions. And, many are located in hospitals that restrict HBOT to a small number of medical conditions reimbursed by Medicare."

It is also very expensive to set up a new facility; anywhere from hundreds of thousands for a single unit to in the millions for multiple units and multi-place chambers. Zoning, fire protection, safety precautions, training, and much more increase the costs even further. These costs reduce the number of facilities even further. 

The article goes on to state something that I believe strikes at the hear tof the matter;

"Psychological defense mechanisms also come into play. If a doctor is not taught about HBOT in medical school (and most are not), and if a doctor therefore does not routinely use or prescribe HBOT for patients, then one of two things must be true in their minds: 1) either that doctor's medical education was deficient and he or she is not providing the best of care for patients; or, 2) other doctors routinely using and prescribing HBOT for conditions that are not FDA-approved (off-label) must be "quacks" who exploit desperate patients. Which do you think their choice will be? It's apparently difficult for many medical doctors to shed an attitude of God-like omniscience and admit that they simply do not  know everything there is to know."

"The medical profession is becoming polarized concerning HBOT. A large and powerful majority of medical doctors believe that HBOT should be restricted to treatment of those rare conditions with prior FDA approval. That majority now criticizes and even attacks the growing number of physicians who have  become familiar with more than 30,000 published scientific papers the subject, and who advocate or use HBOT to treat patients with so-called off-label (non-FDA-approved) conditions. Opponents of such expanded utilization of HBOT should admit that they are remiss in their care of patients, they should open their minds, educate themselves further, and change their ways."

It goes on to discuss the plethora of published evidence and much more.

Definitely check out the article. It is very well written, here is the link again. 

Have a great day everyone!

Peace, Keith 

BLURRINESS IS AN ISSUE - VARIED DEPTH DIVES ANYONE?

SORRY NO POST YESTERDAY - short post today.

My eyes, which are the original site, have been very painful the last few days and I have been experiencing blurriness in both eyes so typing isn't too easy. So this will be short too. Bear with me though ok? 

I am not quitting, I will continue and come out the other side. 

I have a question for those of you who have been through this before. It is one I have heard from a number of you about but I need more info on.

It is about varying the depth of the dives for CRPS patients after the third to fourth week of HBOT. 

Some patients have stated that once they hit the wall, once their pain actually started to get much worse before it improved which usually occurred around the third to fourth week of HBOT, that at their clinic they changed the treatment protocol at that point; especially full body CRPS patients. 

That instead of continuing the deeper dives that they had been doing they switched for a short time to shallower dives, to go after the sympathetic system if I understand it correctly. That the body is switching back to the central nerves instead of the sympathetic nerves, the signals are trying to re-route themselves to be sent along the correct pathways.

What ends up happening is what was affected last will go away first, and the first part of your body affected by CRPS will go away last. If I understand all of this correctly. 

I see it in my minds eye as a gallon jug of pain slowly draining away. The stuff on the bottom of the jug was put there first and will be the last to go. 

With full body, or systemic, CRPS it is made even more difficult because the disease is so entrenched, the bad pain pathways are so deeply embedded.

So, if you have been through the varied dives, especially if your clinic has done this on a regular basis, and/or yo have information you can share with me that I can share with everyone here, please email it to me at keeth@mac.com 

Ok, sorry so short but my eyes and hands and feet are a little rough today folks.

Thanks for understanding,

Keith