Thanks so much for sharing your story.
I was also told by a reputable doc that 'hopefully, it will burn itself out' -- just unbelievable!!

As for me - I am still not convinced that TOS is the complete explanation for all my symptoms -- but I am starting the Edgelow Protocol next week. I will be seeing Steve in Hayward. Thanks for the encouraging words on your success with the program. I have tried so *many* different PT programs, its hard to think that this one might actually work. But, hearing succes stories definitely motivates me...

By the way - what doc at UCSF helped you out?

thanks again for posting.

Let us know how you like the program, I may make a trip up there at some point. I am in L.A.

You can always call around to offices and see if they are aware of the Edgelow program. Not many people are but I was able to find on person who did know and he was local.

The doctor at UCFS is a retired vascular surgeon. Nimelstein, I believe that is how you spell it. He was very informative, he has the condition as well which helps. What is the facility in Hayward? I met Dr. Peter Edgelow. The one who created the program. Its odd at first and they stick to their program, but I called around to many other facilities closer to Stockton, CA and asked if they were familiar with the Edgelow protocol and they include the original PT exercises and tune it to what you are able to do. I do not know where you live but i found Lodi Physical Therapy and met Monty Merrill. He has a good understanding about the condition and all the people that work there are so helpful. I hope the program works for you. I mean its never going to be 100% cured but i do feel better, the most they speak about is posture. Good luck and let me know how it goes.

If it is okay to ask, what happened that caused your pain? I would say its not 100% of what I have but it is what fits best. Good luck.

- Sarah

The place in Hayward is - Physiotherapy Associates at 22330 Main Street, Hayward, CA.
I'm seeing Steve who supposedly practiced with Edgelow for many years before Edgelow retired.

JKL - I'll defintely post back about my experience. Will probably give it at least 12 weeks first. If for some reason, you don't hear from me or see my post - feel free to PM any time.

Wow! That's a unique way to get TOS. I'd be interested to see more about a possible thyroid connection. With all of my imaging, 2 nodules, which were biopsy sized, were found on my thyroid. I also have a goiter and a larger hyoid area. The nodules are benign, but their location had me do some research on a possible connection, especially in relation to one of the nerves which run through the thyroid.

Good luck to all of you doing the Edgelow Protocol. I've done it for years and now blending in some different things I've learned from a CFMT. I think the biggest struggle with TOS patients is finding everything you need in one PT. Insurance companies don't understand this need as well .

I'll be ecstatic if this thing can "burn itself out."

Yes, it would definitely be nice if the pain burned out and went away. If only it worked that way, not sure why some doctors think it will. I had everything wrong with my thyroid as well. I haven't heard of it being connected to the thyroid. The reason I got TOS was most likely from the surgery. I have read that in some cases there is a hyper extension of the neck for the whole duration of the surgery. That in turn, will damage the nerves in the neck, strain the brachial plexus and cause this condition. But this pain as an outcome is unheard of which is why there is so much ignorance in the medical field about the onset like mine. I know a few people who have thyroid issues but refuse to get it removed because they have seen the pain i have gone through. I am sure it rarely happens, but i've seen videos on youtube about these kinds of surgeries and doctors seem to not care about tissue or how they handle it. It's gross for one but it also made me think about how not-so-careful they seem. It's never a sure thing that any surgery will go correctly. It's hard to gauge how a patient's body can handle the medicines and stuff.

I am glad that the Edgelow protocol helped. You are so right, insurance companies do not understand what it is like to have a condition like this. I have had to appeal to them so many times just to get things processed and to allow me to go to the doctors I wanted to. I think the most frustrating thing is not knowing anyone that could understand what I went through and not seeing doctors that believed there was something wrong. Being in pain like that and not knowing was the worst part. Because no one knows how to help, or what can help. It's only trial and error with anything doctors throw at you. Being able to see doctors understand this condition, sadly because they have it or their loved one has it, but they understood the most. I felt better about having the condition because I was validated and started on the path of relief.

I have read that whiplash can cause this kind of condition. The bad thing is I like going to amusement parks but i can only do one or two roller coasters every time I go, it flares up the pain.

Yes, that is where Dr. Edgelow was, I did not know he retired. I saw him in December 2012. But it is a benefit to have someone understand what the condition is and what can be done to relieve some pain.