HYPERBARIC OXYGEN THERAPY - END OF WEEK THREE

Ok guys, it is Saturday and the end of week three. 

Last weekend, I believe I stated that I thought this third week would be a big week. A week of some big changes. I thought I would hit the wall and I surely did. I also have been able to get over the wall and am coming down the other side. 

Have you seen the new version of the show AMERICAN GLADIATOR'S? At the end of the show they have to run a gauntlet of obstacles. The last thing they face, when their bodies are fairly exhausted, is having to climb up a downward moving treadmill and then crash through a wall. 

That is kind of how I feel. I have run the gauntlet, and Monday I hit the treadmill (or the Wall), and by Wednesday I was breaking through the wall. I still have a ways to go which I hope will happen over the course of the coming week, but I am considerably better today than I was on Monday/Tuesday. 

With some treatments there is an immediate result, good or bad.  Anyone going through this treatment has to look at it as if you are doing a marathon though and not a sprint. You have to understand from the outset that it is going to take however long it takes and you are going to stick with it to the end and beyond. Remember, sometimes the best results aren't seen for weeks afterwards.

How does HBOT actually work on CRPS?

Let me quote an article you can find on our website;

"Hyperbaric Oxygen Therapy (HBOT) is a new therapy for many individuals with CRPS/RSD. Interestingly, however, this therapy is not new at all."  (Doctor Allan Spiegel)

"Spiegel says that HBOT supersaturates tissues that have been deprived of oxygen because of the swelling of a limb. Specifically, saturation levels of oxygen in blood and tissues increase 10 to 20 times while in the chamber. Further, HBOT has a tendency to constrict vessels by about 15%, which causes a decrease in swelling from the edema present in most people with RSD. "With HBOT,"Spiegel says,"we are looking at long-term improvement, reduction in pain, improvement in sleep -- and reduction in depression, because pain causes depression."

Susan Rodriguez, a certified hyperbaric specialist from San Bernadino, California, "With RSD, pain is read through sensors in the sympathetic nervous system. (the sympathetic nervous system is what is activated in phantom limb pain, for example). "Hyperbaric Oxygen Therapy, however, can make the switch in the brain back to the central nervous system," Rodriguez says. Under a doctor's direction, she treats both the affected limb and the brain by different atmospheric pressures when the patient is inside the chamber."

"Different undersea depths work on different parts of the body," she explains. "Deeper depths (up to 33 to 45 feet undersea) work on tissue and bone, while milder hyperbarics (such as 18 to 24 feet undersea) work on the brain. Since we are working on both things, I take patients to all those levels. Almost always, the first symptom to come is the last to go. And then the symptoms are gone!"

You can read the whole article by going to HYPERBARIC OXYGEN THERAPY, CAN IT RELIEVE YOUR PAIN? By Patricia McAdams.

So what are some of the things you should look for in a clinic? 

In that same article cited above they offer some tips;

Choose a reputable center for your treatment, where your therapists understand all the risks and take all the safety precautions necessary to avoid a problem. 

A reputable center will;

1) Be staffed by a physician and other healthcare professionals certified by the Hyperbaric and Undersea Medical Society.

2) Require a Doctor's prescription before giving therapy.

3) Have two or more staff members in the building at all times in the event one has an emergency. 

4)  Have strict rules about allowing nothing whatsoever in the chamber with the patient that could be combustible. 

I have added some new links to the American RSDHope website section on Hyperbaric Oxygen Therapy. Pop by and check it out. 

Now, to some questions. 

Some have asked about books regarding HBOT. Here is an excellent link;

HYPERBARIC CLINIC OF SACRAMENTO - BOOK LIST

Also,

WHAT ARE THE POSSIBLE SIDE EFFECTS OF HBOT?

Someone asked me what the contraindications are for HBOT;

WHAT THINGS/SITUATIONS/DISEASES/CONDITIONS can present a problem for HBOT?

I hope that brings me up to date. Feel free to drop me a line, add your comment below about HBOT, CRPS, or just say hi!

Peace, Keith 

ALL IN ALL IT'S JUST ANOTHER BRICK IN THE WALL

All alone, or in two's,
The ones who really love you
Walk up and down outside the wall.
Some hand in hand
And some gathered together in bands.
The bleeding hearts and artists 
Make their stand.

And when they've given you their all
Some stagger and fall, after all it's not easy
Banging your heart against some mad bugger's wall.

from PINK FLOYD'S "The Wall" album, "Outside the Wall (Waters)"

Ahhhh, the WALL. That ubiquitous wall. That smothering wall. 

The wall is not unique to HBOT. CRPS patients, and other chronic pain patients, have often run into a wall when they have gone through treatments and/or started medications. 

Today was treatment day NUMBER 13.  

My pain is definitely down from Monday. On Monday and Tuesday walking was a very painful experience. Typing was very tough. Even sleeping didn't come easy. But Tuesday was a touch better and today, Wednesday, was even better. I am not quite yet where I was last Friday but it feels to me like I am starting to roll downhill; in a good way not in a Sisyphus way. As i mentioned at the beginning of the week or over the weekend maybe I had expected this to be a week of big changes. I am excited to see what next week brings! 

My friends and loved ones are all walking up and down outside the wall, saying their prayers for me, and hopefully I am sharing some good information with everyone along my journey. 

Someone wrote to me asking me "Does HBOT work for peripheral nerve injury?" 

Yes, it is one of the things they are finding they have very good results with treating. Here is a link to some information on it; PERIPHERAL NERVE INJURY AND HBOT. (scroll all the way to the bottom).

BTW, we have added some new articles to the RSDHope website that have an impact on anyone on Medicare. Check out the WHAT'S NEW section for them, at the top of the AMERICAN RSDHOPE website

Tomorrow I should be even better than today so I expect to be able to contribute longer blogs again, back to where I was the first two weeks. Thanks for bearing with me this week guys. I promise to pick things up!

Peace, Keith 

BREAKING THROUGH THE WALL

On Monday I said I definitely hit the WALL, that place during Hyperbaric Oxygen Therapy where the pain actually gets worse before it gets better. It is also, unfortunately, the place where far too many patients call it quits feeling that getting worse wasn't in the bargain. 

So, how did today go? The third day banging my head against the wall? Well, my head, feet, legs, arms, hands, etc.? 

I walked in today and Phil, Doctor Spiegel's HBO technician, asked my what my pain level was my reply was "8% less than Monday". 

"8% less?" he said. "But what is that on a 1 to 10 pain scale?"

Now any of you who know me know the conversation that followed :)

I hate the 1 to 10 pain scale that traditional pain medicine uses. I don't think it is useful when applied to CRPS patients especially. I understand, and Phil explained it well, the reasons that the medical community needs to use it; the universality and understanding of it across all types of medical issues.

My problem with it, and many CRPS patients problem with it though is that it is only useful as a yardstick, when looked at in totality of the patients numbers, rather than as a single days number. My 8 is nothing like a typical patients 8. CRPS is ranked as the most painful form of chronic pain that exists today. 

Doctor Ronald Harbut, who is known in the pain community as the "Father of Ketamine" for his groundbreaking work in the field of treating chronic pain patients with low-dose ketamine, created a Pain-Chart sheet that I discussed with Phil and he asked me to bring it in to him and said he thought they might be able to use it. I have shared it with many Drs over the years who have adopted it.

Basically it is a standard 1 to 10 chart across the top, then below that you break down your pain even further by symptom; burning, tingling, crushing, etc. Many different symptoms are listed and you mark each one on the 1 to 10 scale. There is also a figure of a body where you mark where your pain is currently. Last, there is a space for additional remarks. Patients are asked to mark a new page for each day of the week, three times per day; morning afternoon, and evening.

By using three each day for a week, the Dr gets a very accurate idea of when your pain is the worst/best, how your pain ebbs and flows, and also eliminates the possibility that on the day you have a Drs visit you might have a day when your pain isn't too bad and you aren't showing many symptoms the Dr doesn't understand what your symptoms are; (which does happen, like bringing your car to the shop and it suddenly stops making that rattling noise, until you get it home again).

Long story short, well, ok, long story long, I said my pain was pretty much the same as Monday but a little bit less, still about a "9".

whew, I sure took the long way 'round the block there.

What I was trying to point out was that I think I am coming down off of the WALL, it is just a little so far, the pain is still pretty high, but it does feel like I am a little improved from Monday. I am really looking forward to tomorrow and Friday! I figure the rest of my treatments are all forward, that the hard part is behind me. I am not out of the woods yet I know. But I know I can see the other side of the wall :)

And that's a good thing!

Tomorrow I will have some additional HBOT information to share with you. Also, if you have any questions for me, please email them to keeths@mac.com 

Don't forget, if you want to subscribe to this blog (it is free of course), just scroll to the very bottom of the page and click next to where it says POSTS (atom) that way the blogs get sent directly to your email box!

Have a good day guys!

Peace, Keith

 

DAY ELEVEN OF HYPERBARIC OXYGEN THERAPY

Today my pain is still in a bad cycle. 

I understood this was coming and everyone who has been following my blog should have too. If this is the first day you are reading my blog, please scroll down and read the days in order so you can understand all about how patients undergoing HBOT will sooner or later hit "the wall", the point during their treatment when their pain actually gets worse not better.

But it is at this point that you have to tough it out, hang in there until you get over the wall, go around it, or break through it. On the other side your pain will go down and the hope is, and the evidence points to, most patients having their pain going way, way down. 

So to me, hitting the wall is a good thing. It tells me that the HBOT is working! 

Think about it. 

Just as Dr Spiegel, and most every HBOT Doctor advises, I have not started any other treatment at the same time, have not changed any medication, and I haven't changed my schedule much (except to cut down on my physical therapy a bit and of course gotten a lot more rest).  This was to ensure that we knew any change that occurred to my CRPS, good or bad,  we would know  was due to the HBOT. 

So it stands to reason if the pain is worse it is because of the HBOT. My body is growing new blood vessels, among other things, in those areas of my body where I have had CRPS (which is pretty much everywhere) for decades. The worst areas for me have always been my four extremities and my eyes; the very things that are screaming in pain right now. My body is trying to adjust to the healing taking place. 

I know it is a simplistic way of viewing it but I liken it to the CRPS trying to hang onto my body while the HBOT is trying to toss it out. It turns my body into a battleground. It is why I am in such pain right now. 

But I can fight through it as I said because off the pay-off. It is tough, but one day at a time.   

 

Humor is one of the best tools to battle pain. Our HUMOR Section on the website is one of the most visited sections, outside of the pain areas. That and the POETRY Section have proven to be very popular. 

Here are some of the excerpts from some CHURCH BULLETINS, always a good source for humor.; one of God's greatest gifts!

1- Miss Charlene Mason sang "I Will Not Pass This Way Again" on Sunday, giving obvious pleasure to the congregation. 

2 - At the Evening Service tonight the sermon topic will be "What is Hell?" Come early and listen to our choir practice!

3 - Eight new choir robes are currently needed due to the addition of several new members and to the deterioration of several older ones.

4 - Scouts are saving aluminum cans, bottles, and other items to be recycled. Proceeds will be used to cripple children.

5 - Please place your donation in the envelope along with the deceased person you want remembered.

6 - Don't let worry kill you off - let the Church help! 

7 - Irving Benson and Jessie Carter were married on October 24th in the Church. So ends a friendship that began in their school days.

8 - The ladies of the Church have cast off clothing of every kind. They may be seen in the basement on Friday afternoon. 

Ah yes, humor is a wonderful thing :)

Lastly, on this day I want to give a shout out to the most influential man I have ever met. He had a wonderful sense of humor and even though everyone didn't laugh at his jokes, he certainly enjoyed them. Kind of like me today! Four years ago today he was called home. Dad, we miss you every day.

Peace, Keith 

THIRD WEEK, DAY ONE - THE FIRST DAY OF THE WALL!

ok, today I think I can officially say I have hit a wall, maybe the first, maybe the last, but it is definitely a WALL. 

For those who don't know what I am talking about please refer to some of my previous blogs. 

If you want to know what it feels like to have your CRPS pain spike a great deal in one afternoon.... let me sum it up in one word;

ARRRRRRRRRRRRRRHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!

Ok, maybe that sounds more like a pirate. "But I don't wanna be a pirate!" 

I don't even own a puffy shirt. 

Little shout out to all my fellow Seinfeld fans. Great episode.

Ok, my pain was flaring this weekend as I shared, but today after the treatment my feet and hands just went nuts within about 2 hours after the treatment. 

So, should I just give up? After all, this HBOT was supposed to decrease my pain not give me more pain right? If I told my friends and family members it was making me worse they would certainly understand if I said I wanted ti quit. Well, some of them. Some of them would say, "What the heck did you spend the last two weeks doing if you are going to quit now? Just push through it you whiner!"

Then I would have to punch those guys and decide later that they were right so I will just skip all of that and decide for myself, it is just a wall. 

I can handle a little extra pain. After all, the prize at the end of all of this, even the potential prize, is worth it. 50% , 75%, 100% relief of my CRPS pain/symptoms. Not to mention the fact that HBOT also helps Fibromyalgia, which I have as well. Who knows, in a month or two I may be so pain-free I will feel like I am 13 again. Minus the pimples and growing pains and awkardness, and, ok. maybe not 13 but that was the last time I was pain-free, 100% pain-free.

Short blog today.  My body needs lots of rest today.

By guys, pray for me! I will be back tomorrow and know I won't give up. This is simply a minor set-back and I was expecting it.

Keith 

AS THE VALVE OPENS ...

Imagine waking up in the morning and feeling like there are giant flames shooting off of your feet, or like your legs are being crushed, or to see your hands curled up in a ball because of the crippling pain. Imagine recoiling in horror at the mere thought of your loved one hugging you, for fear of it causing you unimaginable pain.

Imagine not wanting to place your feet in shoes, your body in clothes, your feet on the very ground you walk on because you know that doing so will send ripples of pain throughout your body.

Now imagine knowing you will have to face these thoughts, these pains, every hour of every day, of every week, for possibly years to come. 

That is what living with CRPS (Complex Regional Pain Syndrome), what used to be called RSD, is like. 

So you can understand why patients suffering from this disease are willing to try just about anything, are so desperate for relief, are simply so worn out from fighting this disease, that any time someone offers them the slightest hope of relief, especially when they promise a cure or remission, they jump at the chance. 

It is also why we have to be extra-vigilant. We have to make sure that we do our due-diligence when it comes to researching these treatments and methods. We need to find as much information, talk to as many people as we can, exchange information with other patients who have been through it, find studies regarding the method, etc. before we jump on the bandwagon. 

Don't be afraid to ask questions; of your Doctor, of your friends, of your fellow patients, of your parents/loved ones. Remember, when it comes to health-care you are the customer, make sure those treating you remember that. They are providing you with a service and should not only be courteous and kind but also be willing to answer all of your questions without making you feel like you are imposing and keeping them from a much more important client/date.

All too often patients feel rushed by their physician and so they don't ask the questions they want to. Bring someone with you, as a portable memory since most of us with CRPS have a problem with short-term memory. Take notes and go in to the Drs office with written notes and questions. I always try to bring a written summary with me to the Drs office; how I have been doing since I saw him last, how I am doing now, major issues, and any refills of medications I need. It saves him a lot of time, which he appreciates, and this way I don't forget anything. Plus, I make a copy before I leave which I keep in my records so I can track it myself. 

We were talking about HBOT on RSDHope Teens; a listserv for Teens with RSD/CRPS that is sponsored by American RSDHope.  Sometimes there are questions that need a more in-depth answer or information that we have on the website that I will share. 

If you are a teen or just entering college, this is an amazing group of young people. They are very smart, well-versed on RSD/CRPS, and not afraid to challenge their Drs with information they find. They also are one of the most supportive groups on the internet. I am constantly impressed by them and their questions. We formed this group back in 1997 I believe, shortly after we opened the RSDHope website. Some of the original teens have gone on to become educators and therapists; some have gone on to get graduate degrees; and some come and help out the current teens when they can with their support and answers. 

We were talking on the teen list about HBOT. we were discussing a few specific cases and were talking about costs, length of treatments, length of dives (in minutes), how often you dive, 

Some of what we discussed, my answer to the questions, I thought I would answer here. 

- Some patients actually benefit from taking a few days or a week off from the HBO, then coming back to it. Maybe they are physically or mentally exhausted and need to recoup. Whatever the reason, they seem to improve oftentimes. Most of the time they do not recommend it though. They suggest you continue straight through your course of therapy; unless you develop problems with something like your ears, or another medical issue unrelated to HBOT such as a dental problem. 

- HBOT can often have a delayed result as well. In the beginning of your treatment you often don't know if it is helping. This is especially true with CRPS because the pain is so overwhelming; going from an "8" to a "7" or even a "6" is often hard to distinguish.  

Doctors like to use these 0 to 10 pain scales and maybe they work well for other diseases and pain syndromes but for CRPS they simply are insufficient. I always say it's like getting slapped in the face 1000 times a day. When you have it reduced to only 700 times a day how much do you really notice? Sure, your pain is reduced by 30%, which is a lot, but you are still getting slapped in the face 700 times a day and it hurts like you-know-what!

So if your HBO Therapy reduced your pain 30% the first week or two, you might not notice it too much, BUT, if you suddenly stopped, say for the weekend, or longer, you would definitely feel it and think that in fact, your pain had actually increased. This I think is where the rubber hits the road. This is where some patients decide that they can't or won't go through more HBOT and they quit, or decide, "I can do this, I can give it two more weeks (or whatever is left) because the reward, the pay-off is worth it!"

The same positive result can happen, only on a much larger scale, after you are done with the treatment. In some cases you may not feel the entire positive effects of the treatment for weeks after you finish because the body is continually building on its' success, on those new blood vessels, still clearing out the toxins in the body, still re-aligning those pain signals. It is a delayed reaction sometimes. After all, it took a long time for the CRPS to set in, it won't disappear overnight. It isn't a light-switch that Drs can just flip up or down, unfortunately. 

And this brings us to another important point we discussed. 

HBOT Doctors recommend that you don't undertake any other form of treatment at the same time as your HBO therapy. You should of course continue your normal medication, physical therapy, etc. 

But if you begin two treatments at the same time how will you know which one is working? It would be near impossible. Plus,  if you do the HBOT and spend $5,000 or $6,000 on HBOT, it might save you from spending $45,000+ on an implant, for just one example. And you wouldn't have to worry about the surgery. 

Someone asked if it would be ok to start the HBOT, then take a week off to do low-dose ketamine, then go back to the HBOT? Same principle applies. You wouldn't know which helped you. Plus, most of the top Drs who do the ketamine infusion wouldn't want you doing the HBOT on either side. Both procedures are exhausting and both require a lot of rest to help the body heal. 

Try one at a time and see how that works. Remember, your body is already weakened. Don't further weaken it by trying to do too much or nothing will work and you will make yourself worse. 

On another topic, although related, in April of 2006, on the Discovery Channel they did a program on HBOT and RSD on a young girl. There is a link you can go to, to watch the video; DISCOVERY CHANNEL RSD VIDEO

Lastly, I wanted to share the link for the July CRPS Newsletter for RSDHope. I don't think I had that here before. It is also in the WHAT'S NEW SECTION.   

Tomorrow I head back to the chamber for the beginning of my third week! I am looking forward to it. I am expecting it to be a week of big changes. This weekend I noticed less of a dramatic shift in pain/more pain than last weekend, which is a good sign I think. The CRPS pain in my extremities is still fairly significant but I definitely feel better when I am in the chamber and in the afternoon after leaving the chamber, especially this past week. Diving was much easier and I think I am getting more out of each session. I also slept last night from about 10:30 until almost 6:30 this morning with only a few breaks in between! That is huge for me!

Have a good Monday morning everyone!

Peace, Keith