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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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#1 | ||
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Junior Member
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Hi , just wondering if anyone suffering with tos has used the edgelow protocol and had significant improvement approaching a cure?
thanks richard d |
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#2 | |||
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Co-Administrator
Community Support Team
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There are some that are doing it, hope fully they will see you question and reply.
I do a version of Sharon Butlers' TOS program along with posture stuff that one of the adv PTs that I saw recommended. {the laying on the foam roll - to open chest and allow the shoulders to drop} I really think these are life long things we need to do and keep doing, I haven't taken the time lately and I can feel the tightness creeping into my neck and shoulders and then my hands start hitting the wrong keys LOL. Just being aware of how things affect you is important too, and maybe finding a way to to do something easier or so it stresses your body less. I also do a mix of Alexander posture awareness - keeping the head inline and not jutting the chin forward or up. chin should be a bit below level. and my far infra red heating pad & my EMS stim are my friends ![]()
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"Thanks for this!" says: | richard d (07-20-2008) |
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#3 | ||
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Junior Member
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Thanks for having the decency to respond, I very much appreciate it.
thanks rich |
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"Thanks for this!" says: | Jomar (07-22-2008) |
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#4 | ||
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Junior Member
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If I remember right about 2/3 of the people using the edgelow system get benefit from it. How "cured" you can get depends on how injured you are. My impression is that complete cures are rare but many people do get a significant pain reduction and increase in function with the program.Some people I know got through the whole program and my most injured friend was unable to do any of it.
Overall, one TOS doctor told me about 25% of TOS patients become pain free with appropriate lifestyle modifications. |
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#5 | |||
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Co-Administrator
Community Support Team
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richard,
What are your most problematic symptoms? Maybe if you list them we can suggest what might help best for you. For me I get mostly muscle pain & tightness across the upper back and then it will spread to neck, upper chest & shoulders if I don't do my stretches & self care. But it took me a couple years, lots of reading and some really good PT people to get me to that point, where I can maintain myself. I do still go to chiropractor once a month also. That comes in handy when I have managed to set something off and need a bit extra treatment.
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"Thanks for this!" says: | richard d (07-24-2008) |
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#6 | ||
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Member
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I've done some of the protocol with a trained therapist @ UCSF. I was not cured unfortunately.
I only had 4 visits cleared thru WC. I might have really benefited from more. I have a hard time doing some of the exercises. Even the diaphramatic breathing pulls at my brachial plexus.... I don't know if u live in Northern CA. But I know Peter Edgelow himself will be a guest speaker at San Francisco's RSI Support Group next month ( see info here: http://sf-rsi.unsealed.net/ ) Its a great chance for anybody to check it out if they are curious! (Wish I could go- but I'll be outta town then.) I'm with Jo. I like Sharon Butler's approach (in her book Conquering Carpal Tunnel and other Repetitive Strain Injuries more so than her ebook material available thru her site). Also richard, have you done an advanced search here for Edgelow? You might get some leads as to whom you could private message directly about their PT experiences...
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I'm trying to do good for people tango-ing with RSI & Workers' Comp by blogging it out. Please drop in . . |
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"Thanks for this!" says: | richard d (07-24-2008) |
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#7 | ||
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Junior Member
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thanks you both for the info, I cannot reply at this time as pain and numbness in arms and shoulder and hands is severe, will detail more in a few days god willing.
tks richard |
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#8 | |||
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Member
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TOTALLY THE BEST STARTING POINT.
I started it 4 years ago after 4 years of TOS pain & still do everything I can 2-4xs a day. At the beginning I couldnt even lay on my back and open up. It took weeks, months to get me to keep at it. Then I started feeling the body loosening up. You gotta trust the program! It gets your BP opened up, gets the circulation moving & your body limber. Thats the key to TOS. Keeping limber, breathing, & moving. I dont mean moving like a bat our of hell but feldenkrais style. Slow, calm & percise guided imagery movements. I have an option...Either lay in fetal position, in bed in pain, crying, throwing up, on OPIODS & pain meds all day or get up and move. *Dr. Jordan says to ride the stationary bike for 15 minutes per day. Start what you can do & build week by week. When you feel the pain coming on the worst thing you can do is lay down as I do in fetal position for days weeks at a time. *Get up & move, ride the bike for 4 pedals, whatever it takes for you body to move. *He also states to swim! *Stationary bike & swimming takes the gravity off the body. TOS is constantly pulling us down. |
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#9 | ||
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Member
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i've had some good success with the program and many others have too. It's not about "curing" the TOS. It's about changing your life to minimize it. It's intended to be a program that you build; Peter doesn't start you with all the exercises on the first session. And you have to make a committment to adhere to what you can do w/o pain. And then it's a program that a person would do to maintain themselves just as anyone needs to maintain habits like exercise to live a healthy life. My understanding is that each person needs to find a recipe that works for them. Peter recommende things like Feldenkreis, water exercises, etc. depending on each person's case to go along with his program. I found that those of us that did Feldenkries and those of us that did AiChi or similar water therapies or Qigong had the most dramatic results. I think you'd have to look at similar cases to yours if you are looking into success rates. And also how diligent and attentive people are to their routine and their bodies.
In my case I have some congental spinal stenosis, previous injuries and surgeries and also have a good deal of vascular compression too so I don't think you should base your possibility of a "cure" on me. So yes, as Jo requested, let us know your situation and perhaps people can chime in with thoughts. But just like someone with a chronic condition like asthma, I think one has to have the attitude of managing a lifelong condition while being open a reduction of symptoms that would allow you to live an as-if cured life where you'd continue to pay attention to your body, your breath, your posture, your ergonomics, your conditioning... once you complete your PT program. |
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