Ok, so it wasn't as dramatic as all that. This time of year it never gets below 65 degrees at night, and Florida's idea of a hill is a speed-bump and dawn actually breaks on the other coast. But it did rain a little last night and I did visit the clinic in the morning for my third treatment :) Besides, it sounds so much more exciting than "Ok, day three, I went to the clinic."
This morning the dive was even easier than the first two days. We achieved a depth of below 40 feet very easily and with very little effort on my part. Of course even on the first day my "effort" only consisted of pinching my nose and blowing out my cheeks a dozen and a half times or so while lying on my back watching a movie, but whew, it wasn't easy! After all, I also had to swallow a few times on the way back up. Ok, so I'm not likely to burn off the calories in a donut doing this but hey, it's my story.
So after my heroic effort achieving the treatment depth today I got to thinking about what I would share with you today. The answer came with a question I received from a fellow patient last night and an answer I got this morning from Susan Rodriguez of RAPID RECOVERY HYPERBARICS . (this is a link to her FAQ section).
The question was regarding how long it would take before I would begin to notice a difference. The person wondered if all of the sudden, say on Day 12 or 16, for instance I would suddenly write "No pain finally today!" If it would be that dramatic or would it be a much more subtle thing, happening slowly over the course of treatment, or possibly not even be noticed for a few weeks after I finished my treatment?
I happened to have gotten into a discussion about this very matter with both Susan and Doctor Spiegel. The concern, understandable, was that it is not really the type of treatment that you can write about daily and follow along a progression of healing. That some people may see the way it actually progresses and be put off the Treatment method because oftentimes patients will get worse before they get better; it is part of the healing process.
I thought it important though for patients, and loved ones, to understand the process a little better, not just read about the results in a study, but to be able to have someone they could relate to, who they could follow along with.
But we have to help you to understand how this treatment process works at the same time. Susan explained it well in her email to me and I will quote her here.
"HBOT is an accumulation of treatments. It works on the affected limb(s) by restoring circulation, which will then restore nerve function. When nerve function is restored it sometimes hurts. Picture a rope around your foot, the stages of nerve destruction are shooting pain, pins and needles, then nothing; it is numb. Take off the rope and you feel it all again, as it goes backwards. AND we are working on the brain because finally everyone agrees that RSD/CRPS is a malfunction of the brain with mixed signals. HBOT will allow these signals to normalize. "
"So we are working on several functions at once. This will make you tired, hungry, go through personality changes, etc. It will make you want to quit and not finish the course of treatment. "
Susan asked me to stress that it takes at least 40 to 60 hours of treatments; some people a little more, some people a little less. The treatment times vary, mine for instance are 90 minutes long plus the time it takes to achieve depth and then come back up the the surface. Susan suggests that people simply think of this treatment as a 40 hour work week stretched out over a month or so. It is a great way to look at it because you have to commit to it, to understand that there will most likely come a point when your pain will actually get worse before it gets better, but you have to push through it anyway.
That is easy to say, especially for someone who does not live with our pain every day. But I am telling you this, from someone who does live with it and has lived it every day for more than 3 decades. You just have to think; what is worse? a few weeks of more pain with the possible pay-off of greatly reduced or eliminated pain at the other end, or stopping the treatment early and having to forever wonder, "What if?" "What might have been, if only I hadn't stopped?"
Like any other treatment out there, HBO isn't guaranteed to work for everyone. No treatment works for everyone with CRPS, just like no medication does. But the early numbers look very promising.
I hope this helps to explain the process a little better, day by day.
Peace, Keith
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