Hi everybody ,

I really would like to know what kind of results you have achieved with Sharon Butler's selfcare program.

Who of you was totally cured (which according to S.B. statements is possible)?

Who experienced at least some relief?

Whose condition was worse afterwards?

It would be really nice if many of the TOS-people could answer this.

Thanks to you all.

I started doing the Sharon Butler program about 16 months ago and I've improved quite a bit. It's a slow process and it caused me a lot of pain and inflammation in the beginning but it's been worth it. I've also added a lot of joint mobility exercises lately. I have a post about that.

I guess I should mention that I've had TOS for more than 30 years now. I had a scalenectomy 20 years ago that made me worse. However, after that many years, I am improving with the Sharon Butler program and the joint mobility exercises. I'm not sure how much improvement is possible after this long, but I plan to keep exercising and find out.

Thanks for your answer.

Do you think it is usual that the pain gets more in the beginning? I just do experience the same and am worried if this is normal.

Yes, I think the pain probably does get worse for most people in the beginning. It's because you're stretching tight, injured tissues, that aren't used to it, so they get inflamed afterwords. I think that scares a lot of people away from this stuff. I know I was that way for many years. I thought if it caused me more pain I shouldn't do it, but over the years my body had gotten so tight, I started to realize I needed to start moving, whether it was painful or not.

Coop42, did you try trigger points at any time, either from a pro or self-administered?

I'm not implying a recommendation here as I have not tried them yet. Just wondering if you attempted that course.

Also, did/do you have vascular problems with your TOS? If so, how much did they improve with stretching?

Chroma, I really haven't done that much trigger point stuff. I have done some self-massage on the more fibrous areas, like my forearms and calves. That seems to be helpful at times, to kind of loosen up tight areas. My thoracic area is very sensitive, so I really don't like to mess with it manually.

I do have some vascular symptoms with my TOS like swollen hands at times. I do think this has gotten a little bit better. However, if I have a flare, or even in hot weather, I still get some swelling.

Hi everyone,

I have tried Sharon Butler's program, but I got into a lot of pain even with the slightest stretch. My problem was I couldn't stretch at all, not even a gentle stretch.

I highly recommend Peter Edgelow's protocol. Its a very gentle approach and his technique helps relieve the Neuro vascular entrapment with a lot of breathing exercises mostly lying down and walking for Cardio. Self management for Trigger point pain relief and first rib mobilization with the help of a pinkie ball on stick. I have to mention here that the breathing exercises are also meant to mobilize the rib over a period of time. Breathing is that powerful, I have experienced it myself.

I have been under his care for about 4 to 5 months since I developed scar tissue after a scalenectomy in Feb 2010.
I see him twice a month and I have been greatly improved. I am also taking Gabapentin (neurontin) 3 times a day. His Therapy and the Gabapentin together has worked wonders for me.
He is in Hayward California. He also has a CD and a DVD. You can buy his program. For those of you in America, he may have a trained therapist in your area.
I personally think he is amazing. He is also writing four chapters of a text book on Thoracic outlet syndrome that is going to be published in September.
I don't need any manual therapy or machines anymore. You do need a good chunk of time everyday to follow his protocol in the beginning, ( the reason why I haven't been on the forum in a long time)

Good luck finding the right treatment that works for you. Hope you feel better soon.

stos2

Thanks, stos2! When you said "Self management for Trigger point pain relief and first rib mobilization with the help of a pinkie ball on stick," did you mean that was part of the Edgelow protocol and instructions? Or things that you added?

I had trouble with his web site linking to two PDFs that were broken links, and also finding a web site for any company named "Medical Dynamics" that mentions his kit. I'll start calling on Wednesday.

Edgelow "tool kit" Devices - equipment

[# Devices:
(1) Air pillow
(2) Rib mobilizer (this is the ball on a stick)
(3) 6-inch x 36-inch foam roll -- same as foam roll I use
(4) 3-inch x 18-inch foam roll
(5) 65 centimeter gymnastic ball --- similar to exercise ball I use
(6) 8-foot stabilization belt
(7) double triangular foam
(8) single triangular foam
(9) handheld thermometer
(10) thumbometer
(11) pressure biofeedback unit ]
http://www.edgelow.com/

An older thread with more info-
http://neurotalk.psychcentral.com/sh...ad.php?t=22176

One thing I forgot to mention is, I never try to hold a stretch. When I started the Sharon Butler program, early on, I realized holding a stretch just didn't work for me. It always flared me up. So I learned to just, go to the pain and away, three or four times and not try to hold it.

That's one reason Intu-flow is working well for me, you never hold a stretch. You just go to the edge of the pain or tension. It was an obvious transition for me.

I have done the Edgelow Protocol in the past but I'm making better progress with the Sharon Butler and Intu-flow stuff. One thing I noticed about the Edgelow Protocol is, he always talks about moving the nervous system, but he doesn't talk about muscle fascia and adhesions. If you're really tight like me, you have to get the joints moving before you can move the nervous system.