Sunday, July 13, 2008
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!