Friday, July 4, 2008
Good morning everyone!
Actually it is July 4th! Happy 4th of July, Independence Day! I hope you either enjoyed some fireworks last night or will enjoy some tonight! At least the kind up in the sky and not the other kind.
We were going to go out to see some last night but I was pretty wiped out from my treatment yesterday morning, my fourth day, so I had to beg off. All of you patients out there know what it is like to have to tell your loved ones that, despite how much you want to go somewhere, you simply can't go. You know what it is like seeing that look on their face. The one that says "I figured as much. I knew it was coming and probably shouldn't have gotten my hopes up for going."
Despite the smile and kind words you know it gets old after a while, even from the most understanding SO, and I have a very understanding and supportive SO. It breaks my heart sometimes to cancel our plans knowing how much she wanted to do something. Sometimes, like many of you, I go anyway and just deal with the additional pain, stress, or exhaustion. It is a trade-off and like any relationship, that is what you do :)
Sometimes though, like last night, I am just too exhausted and have no choice. I was told that HBOT would make me very tired and very hungry. They were right! I cam home and ate, then slept for about three hours. Then had dinner and after the Red Sox beat the Yankees I went to bed and slept really well from about 11 pm until 5. That is a very, very long time for me. I only woke up about three times and not for long. I am always up by 5 or 5:30 anyway. There seem to be two types of CRPS patients when it comes to mornings, those who can't get up until noon and those who can't sleep past 6 am. It does make scheduling meetings difficult :)
Ok, so what do I have to share today? I have some interesting stuff plus in a couple of days I will have a good answer to the question a few people have written asking me "What is the big difference between the home HBO units that are soft-sided and the hard-sided units that are used at clinics and hospitals?" There is a big difference and deserves a thorough answer and we have one coming up!
Today though I wanted to share some Case studies involving CRPS/RSD and HBOT that are listed on Doctor Spiegel's website .
Check them out, I think you will find them interesting. Especially interesting to note is the cost comparison between the HBOT and other treatment modalities.
Dr Spiegel states "HBOT has proven itself to be a very viable option to treat RSD. Numerous articles in the medical literature have shown the reduction in pain and swelling associated with RSD and return of function using hyperbaric oxygen. Best of all for RSD patients, this is accomplished with the need for painful injections., narcotics, or surgical implants for pain management. Most RSD suffers find that following the first few treatments they are able to achieve a full nights sleep for the first time in years. Then they notice the decreased need for narcotics, improved thinking, with a diminished depression. The swelling of the affected arm or leg associated with RSD diminishes and they are able to start physical therapy with marked improvement in muscle strength. Many people afflicted with RSD have then been able to return to a happier and more productive life, frequently returning to their prior occupation."
I will continue this a little later guys. Need to lie down for a while :)
Wednesday, July 2, 2008
It had been a cold and rainy night ... the wind was howling down through the hills as dawn broke over the horizon. My car crested the last hill and I spotted the Hyperbaric clinic in the distance.
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.
Tuesday, July 1, 2008
Ok, not the most exciting title. I'll work on that for tomorrow.
Yesterday I dived (is it dived or dove?) to about 18 feet, standard depth for a first dive. This morning I went to the standard treatment depth for CRPS. I have to check with the Phil (the tech) on the exact depth I reached but I believe it was around double that.
Yesterday I shared that I took a little something to help me relax so that I wouldn't be bothered by my claustrophobia. I wasn't, but I didn't feel it was the medication so today I didn't take anything and I was just fine.
I didn't have any problems going into the chamber or being in the chamber today. Nor did I have any problems going to the deeper depth. As a matter of fact, I was actually quite surprised when Phil came over the the chamber and said, through the microphone, that I was already at 18 feet!
To pass the time today I watched a movie, it turned out to be a pretty bad one unfortunately. About the only issue I have going through the treatment so far is the noise that the chamber makes as it pumps in the oxygen. It isn't terribly noisy, you can hear the television over it, but for those of us with CRPS who do have issues with noise it can sometimes be a little troublesome. But you know, as I sat there listening to that noise I thought, if it takes listening to a little noise to get rid of some of my pain, it is certainly worth it.
Which brings me to a question a few people have asked me. What do I expect to achieve with my treatment? If HBOT has been shown to help patients with CRPS as well as Fibromyalgia, which am I hoping or expecting it will help?
Actually I am hoping and praying that it will help not only both of those things but also the problems I have with my eyes. At the same time I have been through enough treatments over the years to realize that you have to go into any new treatment with 100% attitude that it will work and balance it with an understanding that there is never a guarantee.
Some things to note that I didn't get to touch on yesterday.
While undergoing this treatment they give you B-12 boosters and advise you to take 400 units of vitamin E. They monitor you to make sure you don't get too much of the B-12. Also, you will discover that while going through the treatment you will be need more sleep and want to eat more food. I was advised to make sure I eat and sleep, sleep and eat! While I may have to force myself to do that, I will try :)
As a matter of fact, I am off to bed now.
Before I go, someone asked for the link to the new HBO section on the American RSDHope site. It can be found by going to AMERICAN RSDHOPE HPERBARIC OXYGEN THERAPY
You will find a lot of info there and more to be added.
Also, if you simply want information on CRPS (formerly known as RSD) or Fibro or Chronic Pain in general, you can get that by going to our main page, American RSDHope
See you tomorrow, promise it will be longer!
For those of you new to the RSDHope family, welcome :)
Monday, June 30, 2008
Before I start I just want to say, the staff at National Hyperbaric Oxygen Therapy is fantastic. From the moment you arrive to the time that you leave they treat you like family and make sure you have everything you need and are as comfortable as possible. Dr Spiegel, Phil, and Marcia were all amazing today. Thank you!
As they slid my body into the Hyperbaric chamber I have to admit, I was a little nervous. I am very claustrophobic. They had offered me something to take the edge off and I took the smallest dose, just in case :)
They recommended I close my eyes as I was rolled into the chamber and then open them once inside and said that "I wouldn't even notice". You know what? They were right! I wasn't bothered at all by being in the chamber.
At the facility I am having my treatment's done they use the Sechrist chambers . These are individual chambers, meaning only one person at a time fits into them, as opposed to some facilities that use the multi-person chambers, such as the ones displayed on the HyperOx website .
I am sure that being in the multi-person chamber you definitely don't have to worry about claustrophobia but even the Sechrist unit that I was in, it was no big deal because it is all clear around you. It is sort of like being in a big glass tube. There is enough room to maneuver, to change position, shift from lying on your back to lying on either side, placing a pillow under your knees if you have back problems, propping up your head on a couple of pillows, etc. While inside I just pictured myself on a long plane ride sitting in the window seat; where you are in a somewhat confined space but not unpleasant.
Before I got in Phil, the Nurse/technician, asked me if I wanted to pick out a movie or I could watch live TV, or even listen to a book on tape. After a thorough explanation of the hand signals that he and I would use to communicate (in addition to the microphone/speaker set-up, he explained how the "dive" would go. I would slowly descend for a while, achieve the recommended depth for the first day, stay there for about 90 minutes, and then slowly ascend. He explained how I would need to breath, use my ears, mouth, nose, etc. all along the way to ensure there would be no ear pain or other issues.
Phil was right alongside the tank the entire time I was descending and ascending making sure I was doing ok. It went very smoothly. My ears needed to be cleared quite a few times going down, which is normal, and there is a procedure for doing that which he made sure I knew how to do before I even entered the tank.
The time I was actually "at depth" was, well, not any different than lying on my couch watching TV. Except for the fact that in my living room I don't normally have people walking by every five or ten minutes looking down at me checking to see if I am Ok. I guess that is a good thing, because that would be a little weird, ok, a lot weird.
But I digress.
So I sat at about 18' below sea level and watched the History Channel. All the while thinking ... "Could it really be this easy? Could it be this easy to getting better, to relieving my pain?"
I realize that there will come a point in the treatment when I will actually get worse before I get better. This is an important thing to note because oftentimes this is when patients will give up on the HBO treatment, thinking it isn't working, how can it be if it is making me worse? But that is just the nature of the beast, the ay this treatment works. if you can hang on and push through that difficult time, that rough patch and make it through and keep going to the treatments, you will be rewarded in many, many cases with relief from your pain, symptoms, etc.
So, over the course of the next four weeks or so I will try to relate my experiences to you, let you know some of what I experience, some things I have learned that might help those of you considering it, etc.
Right now though I am exhausted. I am hoping and praying that what I have been told by many patients and Drs is true. That many patients end up getting an amazing nights sleep after their first HBO treatment! YEAH! I remember sleeping through the night, well not really but I have heard stories about it. They seemed like wonderful stories of very lucky people.
I remember something that Dr Spiegel said at a meeting the Palm Harbor/Tampa Bay CRPS Support group held a few weeks ago. He said that healthy people need to think back to a time in their lives when they went through a rough patch where they didn't sleep well for two or three nights. To remember what that did to them; made them irritable, cranky, groggy, made it difficult to concentrate/work, left them feeling exhausted, tired, and worn out. He explained how we all needed our REM or healing sleep in order to function properly.
Then he said to imagine not sleeping well for weeks, months, even years on end as chronic pain patients have to deal with. I have had this disease for 34 years as I said. I could use a good nights sleep :)
See you tomorrow,