Thursday, July 24, 2008


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. 

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 


Editor said...

Good to be able to meet you in person today! Thanks so much for waiting after the appointment for us. It was great to be able to meet Dr. Spiegel as well. See you on Saturday for the Orlando group meeting! Jason

jayne said...

I agree that it was great to be able to meet Dr. Spiegel as well,hope i can also meet him.Anyway,thank you so much for the information.

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