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Old 20-12-2008, 12:16 AM   #1
chad
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Default RSD marketing experience

Hello everyone, I need to post this after an experience I had today. In the town that I practice there is an "RSD specialist" people come to see him from all over the usa. While in the waiting room today a patient said they movede from alaska to be closer to the dr. A few weeks ago I dropped off journal articles about graded motor imagery, mirror therapy, recognise program from NOI ect. I left it open for the Dr. to call me and discuss this treatment. He actually called and asked to meet today. So I was assuming he actually read the articles and knew why I wanted to meet with him????? Silly ME
So after I waited 45 minutes to meet with him he comes in and asks me what I'm selling, ugh!!! After asking if he reviewed the articles he said no, he had no idea why I was there, but he called me to set up the visit??? After talking to him for a few moments as a attenpted to explain the pain research and RSD, Moseley ect, he said to me that he feels what the patients need is a kick in the ass. He goes on to explain he had three laminectomies and never needed PT and missed only 5 days of work blah, blah blah. I though going into this meeting that this would be a Dr. who may have an understanding of the pain neuromatrix something but no. Today I have realized how far we have to go to change the medical system and those that are in it. Thanks to all of you here who battle everydy to spread the word of neuroscience, A long battle in front of us indeed. Thanks for letting me vent here.
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Old 20-12-2008, 01:06 AM   #2
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Wow. Vent away Chad. What a disappointing meeting.
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Old 20-12-2008, 01:30 AM   #3
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Using google for RSD and CRPS, the first few pages never mention Moseley, "graded motor imagery, mirror therapy, recognise program from NOI ect."

How do we get these associations to the top of the list?

Since we now have spiders tracking our forum, maybe adding tags to our threads might help the search engines find our comments, or push them further up the list.

Are there any marketing "experts" on this forum who could provide ideas on how to publicise the recent scientific findings?

Mary
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Old 20-12-2008, 10:33 AM   #4
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"a kick in the ass?"
What an idiot. Does he even read literature relevant to the thing he's supposed be an expert on?
I get this type of crap all the time here in Germany. Some physicians have a teaching license, and get called "Professor". Thereafter the ridiculous treatments they espouse are viewed as infallible as if they are some kind of god.
I feel your pain, Chad - i've seen that stuff, too....
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Old 20-12-2008, 10:12 PM   #5
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Default RSD treatment

Chad,
Are you currently using the mirror therapy, motor imagery in practice ?
If so, I have someone I would like to send you. I have already talked to him and his wife about the treatment, but told them I would find out if anyone in the area is using it yet. I don't think the big rehab centers are doing it yet. I just took the Explain Pain course with Butler and we purchased a mirror box to play around with, but I havent gotten any of our therapists to take an interest yet. I should be greatful, I guess. Several heard Mosely talk here in the summer(or come here for that matter, go figure)
The patient has RSD in the right foot. He has a left CVA with moderated spastic right hemiparesis. He is quite functional, has had tendon lengthenings and TKA since his stroke. He is coming back after the holidays and I promised to look into the treatment availability for them. Furthermore, he lives in the S. Jersey area.

Bryan O'Neill, MD
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Old 21-12-2008, 12:10 PM   #6
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Tell me where I need to go and line up for my "kick up the ass", how I wish it was that easy!

Chad, are you at liberty to name the Dr? Its just I know a girl who moved from Alaska to see a particular Dr and I am wondering if it is her you are speaking about. If it is then once again I dont suppose she will have much luck?

As far as the education of health professionals, I wonder how many of you would believe that many chronic pain patients relatively understand the basics of the pain neuromatrix...maybe it will be with educated patients help that health professionals will learn? How many times have I been told that I am the 'expert' by the medical people I have seen, I know many others being told the same thing over the world.

I know chronic pain patients recommend "Explain pain" to newbies to read so they can understand their pain better,. Both D. Butler and L. Moseley are names that are spoken in CRPS circles...Mirror therapy is being taught along the grapevine and then specialists are learning about it. I know my hand physio is surprised about how little this is being used in the States, maybe with you working on the professionals and patients working on the patients the battle will be won?

CRPS patients often turn away from their so called specialists to the internet to find answers, thats how I got here, I found Diane and she sent me this way
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Old 21-12-2008, 02:06 PM   #7
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Felicia

Quote:
How many times have I been told that I am the 'expert' by the medical people I have seen, I know many others being told the same thing over the world.
Do any of the groups you know have a program like this one from The Arthritis Society?


Quote:
The Patient Partners in Arthritis program is a unique opportunity for people with arthritis to provide medical students, allied health care providers and community-based physicians with valuable, hands-on experience to increase their skills and effectiveness in examining, diagnosing and treating people with arthritis.
http://www.arthritis.ca/local%20prog...efault.asp?s=1

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Old 21-12-2008, 09:30 PM   #8
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Quote:
Originally Posted by Mary C View Post
Felicia

Do any of the groups you know have a program like this one from The Arthritis Society?

Mary
Not that I have come across (that doesn't mean there isn't one but I would be surprised), that program has had a lot of thought put int to it-a lot of the time people are still too busy trying to get their Dr's to help them. I know that it comes up quite a lot the fact that maybe we should be trying to inform medicos and in their own small way some do (but this is just during visit's and an overview of what CRPS is rather than delving into the neuroscience behind it) but many say it is the professionals job to do the research not the patients.

Thanks for showing me that though, now it has given me some inspiration and an idea...I have the rest of the summer off and of course I am in the right place (a university where about half the health professionals of our country are trained) to see if I can't set about starting something like this of my own, obviously not on that large scale but I wonder if I cant change the way of thinking behind chronic pain one class at a time.
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Old 22-12-2008, 02:17 AM   #9
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Thanks to everyone for your thoughts on this issue. Felicia, I do not want to put the doctors name out on the board here. He has a great reputation in the RSD community and the treatments he feels appropriate must be fairly successful because people speak highly of him.
I just don't feel he has a real understanding of what the new science is offering and on that day he was not prepared to listen. I just don't understand why you would ask to meet with me and then when I show up have no idea why I am there and never look at the literature I gave to him. Just does not make sense to me. I am not going to close the door on that relationship just yet. I may not be reaching him at a time when he is ready to hear the information I have. Similar to some patients, and the thread Bronnie began about readiness for change.

Dr. O'Neill, I am treating patients with the NOI recognise program online version and mirror therapy. I have treated 1 patient with rsd in the foot, was walking with an axillary crutch for 6 months, she scored a 60% on laterality recognition of the foot, after three weeks she is 100% on recognition and ambulating community distances without her crutch. I have also treated 1 LE amputee who had persistant phantom pain for 10 years and his symptoms resolved in about 6 weeks. Those are my only two that I have treated so far but I see great potential for the right patients.

What were your thoughts on the explain pain course? What was the reaction of the therapists that attended?

If you need my contact information please PM me and I will send it to you.

Thanks,
Chad
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Old 22-12-2008, 02:53 AM   #10
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Well that figures..obviously he his not up on his research, that is for sure.

I was just listening to the radio today and the show host was talking about chronic pain and that drugs, physio etc were of no help and that people should be coming to his office to get "reconstructive therapy", which in his lingo is prolotherapy. Such a load of junk...I am so sick of it already! (that's another topic but I had to get it out )

Anyway, I do use the Mirrox Box and it has been very helpful for a MS patient I had to the RSD patients that I have seen. I took Explain Pain a couple of yrs ago and absolutely loved it!
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Old 22-12-2008, 07:01 PM   #11
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I can't help but think that if people still call complex regional pain syndrome RSD that it might reflect the lack of up-to-date knowledge? It's been CRPS for some years now, courtesy of IASP, and the disorder is not 'reflex', not simply a 'sympathetic' system disorder, and 'dystrophy' is not the only outcome!

Arthritis New Zealand in Christchurch does run a self-help course like the one you described. They are run with nurse facilitators - unfortunately it's not a cognitive behavioural self management programme, but nevertheless it's good practical advice.

I am still waiting to see some good data in patients on the relationship between scores on laterality programmes and function - while I can accept motor imagery, the laterality thing simply doesn't do it for me. Does anyone know if there are any norms for Recognise? And any studies to show the relationship between improvement in laterality recognition and function?

BTW I'm working with a lovely gentleman at present who is using hypnosis imagery to reduce his phantom leg pain while he wears his prosthesis - similar principles to motor imagery and mirror box, but more portable. He's a great hypnotic candidate, practices readily, and is very motivated (which helps!). Initially I was using hypnosis for relaxation and simply to help him feel more confident about moving - but the post-hypnotic suggestion that we developed gave him 'normal' sensation in his prosthesis, and no phantom! Very groovy.

Returning to 'kick up the ass' - part of the problem is that people work their painful limb too hard, then get a flare-up, then avoid moving like crazy... If only someone would remind that doctor that the limb is attached to the brain somehow?!
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