Or good evening, depending on when you read this of course.
I want to thank everyone who has not only shared this with their friends but also those who have forwarded it on to the CRPS and RSD websites they are a part of. I appreciate the vote of confidence.
On another note, because this blog has been so successful I was thinking of starting one this weekend for another organization I belong to; Procrastinator's Anonymous. But on second, that can wait until September.
People have asked how I like it down here in Florida, if it has been good for my CRPS. Absolutely. The cold weather made our CRPS worse. If you check out the RESULTS OF A NATIONAL SURVEY OF CRPS PATIENTS that American RSDHope did a number of years back (most of the results of which remain the same), you will see that 71% of respondents felt that the cold made their pain worse. 16% felt the warm weather made it worse, 22% felt it made no difference. (it adds up to more than 100% because some patients reported that both the warm and cold weather made their pain worse)
Also in that survey, 95% of CRPS patients reported having Burning Pain; 79% memory problems (I think that was the number); 74% said they dealt with Depression; 89% dealt with Allodynia; 60% were Touch/Sound Sensitive; 64% dealt with Weight Gain. There were many other findings. Drop by and check out some of the findings!
I think that one number that mot likely has significantly increased from the time of the survey is that 44% belonged to a Support Group. I think in the last five years alone membership in these groups, both local and on-line, has increased dramatically; as well it should.
On-line groups provide a place for patients who aren't mobile and/or don't have access to a local group as well as provide patients with a way to share information regarding their disease. Local groups provide much needed personal contact for not only patients but also their loved ones. They also enable patients to share information on local physicians and therapists.
It is time we did another national survey though.
So, how is my HBOT going?
It is going well. We had hit a wall, as most of you know who have been following my blog, a sort of impasse, where my pain had actually increased. This is a typical point in the therapy for CRPS patients unfortunately. It is one most of you will also have to deal with at some point and have to PUSH THROUGH. It isn't easy but any of you who have dealt with this disease, have lived with this disease for a year, or two or five, are tough, are strong. If you can deal with the constant pain of this disease you can handle pushing through the wall, especially when it could mean a lot less pain on the other side!
So how did we do it? What did we do to help get me through, over, around the wall?
We did something that was brand new to Dr Spiegel and his clinic. Something suggested by Susan Rodriguez of Rapid Recovery Hyperbaric's in CA, and several full-body CRPS patients I know who have been helped. That is, the varied depth dives.
There are some clinics around the country that are doing variations of this method; where they vary the depth of the dive either from day to day or even during the same dive; from the standard treatment depth of 2.4 atm to the shallower treatment depth of 1.75 atm.
I heard from many places and nearly all had great results. Dr Spiegel was open to trying this since we seemed to have come to an impasse in my treatment. I was not getting beyond the wall so we decided to try three days completely at the shallower depth. At the end of those three days we seemed to have broken through the ice and the healing seemed to have begun.
That was last week. You will notice that was when my pain began to drop.
This week we did, Monday and Wednesday at the standard treatment depth, and Tuesday, Thursday at the shallow depth. If you recall, my burning pain has been receding steadily!
So we will continue on this path and se where we are at the end of next week, and then reassess.
Now, does this mean that this approach should be used on every patient or that here at Dr Spiegel's clinic he is going to change his protocol for CRPS patient's to the varied depth protocol?
No and No.
Remember, every patient is different, especially with CRPS. Every time I speak at a pain conference or meeting I try and stress this point when patients and/or loved ones ask about various treatments. CRPS is a very complex disease. It can begin in many different ways and take many different paths as it progresses. One treatment may work for 3 patients and not for the next 7. About the only thing that holds true is that we need to try and stay away from invasive treatments, anything that can possibly further involve nerve damage.
So, we will continue our therapy, continue trying this version and learning as we go. maybe it will help another patient down the road and hopefully it will continue benefitting me as well.
Take care everyone,
Peace, Keith
No comments:
Post a Comment