Thursday, September 18, 2008
Ok, I know I said that was my last post regarding my HBOT treatment but I need to make two more points that are very important; one that I thought I had made but apparently not strong enough, and a second that I neglected to make that I absolutely should have.
1) I have heard from a couple of people, and I believe that Dr Spiegel has as well, who actually said they were sorry that the HBOT didn't work out for me. They thanked me for all of my work on the blog on behalf of other patients but felt badly that I didn't benefit from the treatment.
While i was appreciative of their comments I was quite surprised to say the least by their feeling I didn't benefit from the HBOT! I thought I made it pretty clear that I did very well in the end.
Until I re-read my last blog and realized that I never went back and finished the second part!!!!!
I was writing the last day of the blog in two parts and got interrupted by an issue with my computer and when I came back to it, my first part was gone and I didn't even notice it. I didn't think anything of it until people started writing to me saying they were sorry I didn't do well and Dr Spiegel wrote to me asking what was going on? People were saying the same to him and I had just had an appointment with him were we discussed that I had done pretty well!
Mystery solved! One whole blog entry gone!
So here it is!
If you were reading the blog in the days leading up to the final day you will remember that I had my CRPS originally all over, or "systemic".
You will also remember that over the last month or so of treatment that my CRPS pain was reduced to a only few areas; my eyes (original site), ears, right foot, and my left leg from my knee to my foot. The CRPS was only barely in s a few other areas. This is it!
The allodynia or sensitivity is still in quite a few areas but that is an enormous reduction in pain folks!
After I took a couple of weeks off, due to the hurricane, I came back for a week but we did not notice a improvement so Dr Spiegel felt that I had hit a plateau and he did not see any positive reason for spending any more time or money on more treatments and so we discontinued them as of last week, after 38 treatments in total.
So while I do appreciate the kind and heartfelt words, understand my CRPS pain was definitely reduced by the Hyperbaric Oxygen Therapy.
Now, many of you know that I also deal with Fibromyalgia, sciatica, back issues, migraines, etc. some people find that some of these issues are affected by HBOT.
While it doesn't seem to have affected my other pain issues I can say I have had maybe two migraines in the last two months!
Many patients find greatly improved sleep due to the HBOT, mine didn't seem to have been positively effected by it other than being very tired during treatment, which is very typical. However, I just talked to two patients yesterday who recently began HBOT and they said they have never slept better in their life!
What must be understood when reading something like this blog is a point I have tried to make often; every patient is different. You cannot compare your pain to mine, my results to yours. I present this blog simply as a summary of my experiences with this treatment and as a way of passing along information about the treatment in general, websites, descriptions, etc.
Most CRPS patients don't have all of the medical issues I do so they are typically easier to treat. They are what Drs usually refer to as "clean" patients, meaning they have just one medical problem. "Clean" patients are far easier to treat because it is easier to determine what works on the disease in question and what doesn't.
Think of the patient as a house and the disease as an electrical problem, which is fairly close actually. With a clean patient it is much easier to zero in on the source of the problem, try various things to treat it, determine what is working, what isn't, and fix it. When it is fixed, it is easy to tell, the lights come on, everything works normally.
When you have multiple electrical failures, and a plumbing leak, and a foundation issue all at the same time, trying to fix one thing presents a problem. When you start fixing one it becomes difficult to know if it is fixed becomes so many things are still wrong. Fixing one problem doesn't always show, it can be difficult to tell so finding a contractor to work on this "fixer-uppers" isn't always easy.
Ever see the move "The Money Pit"? That is how my body feels sometimes, lol.
Anyway, so what I addressed in my blog, about how the CRPS was attached to me, how it just wouldn't go away, was the parts that won't leave me. How no matter what treatment I try there is always seems to be a percentage that hangs on. I believe it is because I have had it for so long. Thirty four plus years now. I know a lot, a lot of CRPS patients across the USA and around the world and I don't know that many patients who have had it over 30 years. Why? I don't know. Question for the next blog maybe.
But since this page of the blog disappeared, and all people read was the second page, all they got was " the CRPS just won't go away" basically. So most people apparently felt whatever relief I had gotten went away and all my CRPS came back. Not true.
The relief I received from the HBOT a few weeks ago, I still have.
How long will the relief last? I don't know. I do know that you can get booster treatments down the road and keep your level of relief and maybe even attain more relief the next time.
I also know, from talking to a lot of HBOT patients, that you can actually achieve additional relief weeks after you stop the therapy. Sort of like a bounce affect. Why? I don't know. I will try to find out for you and post it in the CRPS log.
SECOND THING - DANGEROUS LIMB
Now the second thing I wanted to post about and didn't, but should have, is I wanted to talk about the success of the blog and how Dr Spiegel went out on a limb, a dangerous limb, by letting me blog about my experience at his clinic.
When I first talked to Dr Spiegel about doing the blog he talked to some of his fellow HBOT Doctors about it. I think, don't know but think, that they warned him off letting me do it.
You see, HBOT isn't like going on a diet, following an exercise plan, or doing a work-out regime. It isn't something that you typically write about every day that others can follow along and mark your daily progress. With HBOT you may go forward one day and backward the next. One week you may have a great breakthrough and the next, you might hit the wall and want to stop because your pain goes over the top.
If people read that their pain will actually become worse by doing this therapy, the other Drs feared, they wouldn't even want to begin it. If they were thinking of starting HBOT and read how it was up and down, or worse, read that it didn't work on me, they wouldn't ever do it.
This was the biggest fear. Because many people know me, through the RSDHope website, if it didn't work for me, it might turn a lot of people off Hyperbaric Oxygen. And since I had all these other issues, besides RSD/CRPS, there was a good chance it might not work, after all it doesn't work for everyone.
In addition, how would Dr Spiegel control or know what I was writing until after I had written it? What was my ulterior motive in all of this?
So I have enormous respect for Dr Spiegel. Because he trusted me. He understood what I was trying to do. He understood the bigger picture. For him it wasn't just about trying to drum up business for his practice. And while he wanted to help me personally reduce my pain, he understood it was about much more. It was about educating the pain community about Hyperbaric Oxygen Therapy and how it could help many, many patients and not just one.
Even if he was a little nervous at first with the blog, he settled down quickly as he saw how I shared information with everyone about Hyperbaric Oxygen Therapy; how it works, what it does, who it works for/doesn't, the thousands of studies available, links, and more. He, his technician Phil, and Susan Rodriguez (of Rapid Recovery Hyperbarics, one of his colleagues) helped me answer the many, many questions sent in to me by everyone reading the blog.
I was amazed at how the Hyperbaric Community, the Doctors and technicians at the various clinics around the country, talk with each other, share information, ideas, and work together to try to get the best help for patients as they can. It is all about reducing pain. It is an amazing sense of dedication to pain-relief and as someone who deals with pain patients on a regular basis, a joy to experience.
So hopefully all of those who were a little nervous in the beginning have come to see how much we have accomplished. Google now brings up a lot when you search "RSD and hyperbaric", or "CRPS and hyperbaric" and we are adding more information all the time.
It isn't the only treatment out there for CRPS obviously and as we mentioned, it doesn't work for everyone, but it is one more tool in the arsenal and it is non-invasive.
I hope this clarifies things and I do apologize for the confusion!
Sunday, September 14, 2008
"If you want to live your whole life free from pain, you must become either a God or else a corpse". -Menander
Todays blog I seem driven by quotes. I have included so many in my talks over the years and have a passel of them (for you young folks under the age of 100, passel means a lot). I don't know why but most of the points I wanted to make in todays blog , every time I thought of what I wanted to say, up popped a quote in my head.
When it comes to where we are in my treatment. we have reached a plateau. My pain, what is left of the CRPS portion, doesn't seem to want to go away. It apparently has grown too attached to me to leave.
Am I shocked? Not really. When I had my low-dose ketamine treatments (2003 and 2007) even though I got into almost complete remission, about 85 to 90%, it never completely went away. I have had this disease for over 34 years now and it is full body. It has had a long time to sink its claws deep into every crack and crevice in every system, cell, and fiber of me.
Am I disappointed? Absolutely. Every time I try a new treatment of medication I do so with the hope of being free of this monster.
Will it set me back? Let me put it this way ...
After all, we made great progress with the Hyperbaric treatment. Thanks to Dr Spiegel my CRPs pain is down significantly. Mainly I have the CRPS pain now in my left leg from my knee down to my foot, in my right foot, in my eyes and ears, and then of course the allodynia issue. But, if you had seen my pain chart when we started you would be amazed. My darkened areas, those places where my CRPS was, was pretty much everywhere; both legs all the way, both arms and hands, eyes, ears, face, and of course back, neck, and a few other places.
So compare then to now!
I have also cut my meds down some as well. That in itself is a good thing as all of you know. I am so sick of taking medication. I have been on them for so many years now and even though I have regular tests on my liver and have blood-work done, I do worry about the effects of all of that. Not to mention I am just, like many of you, a little over the side effects of some of these things; the tiredness, the sluggishness, the , sleep problems, and, well, other issues.
But having said that ...
One of my favorite quote and one that fairly well describes me and well, I guess my stubbornness (I am a Taurus after all) is this quote attributed to Calvin Coolidge;
So, like so many of you I forge ahead because I am too stubborn to turn around. I once was told that I was like a rhino. That they have tough skin and can't turn around, they can only charge forward, can't go sideways, something like that. I hope when they said "tough skin" they meant I was tough and not that my skin looks like a rhino's! Either way, that is what I am going with.
George Patton once said;
Some of us are fluffier than others and probably bounce a little more. (this is evidenced by anyone who has watched WIPEOUT on Fox-TV). A silly show to be sure but a hoot to watch.
Of course, there is always the alternate view as espoused by Homer in the Odyssey, "The lot of man - to suffer and die".
Cheery guy. Unfortunately over the years I have met quite a few patients who feel this way. This disease has hit them, it isn't fair, their life is over; their Doctor told them they are the worst case he has ever seen so they are sure it is so and their live is surely over and they will never get better. They can no longer do what they did, are not who they once were, don't want to hear what they can be or what they might do in the future because they become so mired in what once was.
At this point it isn't about the physical pain, it is about dealing with the emotional pain and the damage it has done to your psyche.
So often patients focus on the past, they focus on what they have lost.
I realize it isn't easy to focus on the future, to accept what has happened and accept the new reality. But until we do, we cannot move forward. Until we can do, we cannot hope to begin healing.
When it comes to chronic pain, especially long-term chronic pain, we may have to give up some of our past in order to gain our future. But if we don't we will find ourselves mired in the past and unable to move forward.
Do more than just accept where you are. Move forward. Seek out information, find ways to decrease your pain, find ways to help others, seek out others and together form groups to help others who have to daily deal with chronic pain.
The choice you get to make every day is what you will do today. Your pain will be there anyway, whether you sit and do nothing or whether you reach out and make a difference. You decide. It could make all the difference for you, and for many others.
In the coming weeks I am going to begin a new blog, a new version of PAIN IS A FOUR LETTER WORD. It will be one for CRPS/RSD. Because so many people have responded positively to the information contained in tis blog when I discussed CRPS, I decided the need was there for one where I could pass along information, share new websites, updates from the website, answer questions sent in to us on the site, etc.
I will put an announcement on the website in the WHAT'S NEW section about it so keep an eye out for it!
I want to thank Dr Spiegel of National Hyperbaric Oxygen Therapy for all his help in answering questions posed here by patients, and myself, in putting this blog together. I also want to thank Susan Rodrguez of Rapid Recovery Hyperbarics for her help along the way.
I also want to thank everyone who wrote in, sending in their questions and comments along the way. They helped move the discussion along and provide some interesting questions and answers!
So in closing let me leave you with this thought from Pakenham Beatty;