Recently diagnosed with "atypical" nTOS after 2 years of symptoms.

I have already tried conventional PT, fascial release (a la Sharon Butler), chiropractor, and massage - all of which caused flares. Now I have been on the Edgelow protocol for a few months with mild improvement.

I understand that this is a lifestyle change, not a 4-week program PT program, but I need to know, is there anyone out there that considers their nTOS "cured" or "managed" and who has successfully returned to work at a near-normal level, say at least 80% time?

If you describe what pain & symptoms you have and what your avg pain level is, it might help give a better base for others with similar to reply.
Many have varying sx & pain levels and different causes..

Are you working still?
My feeling is PT often cannot offset ongoing reinjury/damage...
Is your TOS possibly work related?
Any previous RSI injuries or prior whiplash injury?

Do you feel your PT was knowledgeable & advanced?
Or more of a one size fits all/ preset plan? (often does not work)

Hi there,
Managing TOS is not as much about curing it, as managing it. There is remission. It can calm its ugly head, just waiting to flare.

Learning what escalates symptoms and avoiding those activities or finding a new way to do them.
Working is very difficult, many do with the sedentary work, that which is no more power used than being home.
Finding ways to adapt your working environment, and changing jobs to less repetitive. Even reducing hours is good, or manageable for trying to maintain income.

Workers comp if work related can often be a battle, stressful and eventually ends. Social security can be such a minimal amount of income compared to that which working brings in. Add to the cost of paying for Medicatpre, supplentl coverage, drug plans and the out of pocket expenses is not a picnic.

If you have HR, they can bring in an Occupational Therapist to make your work area more ergonomic, you may need to change jobs, then know how to reduce symptoms when you are off work.
Finding ways to sleep decently, I have a hot tub that use to run endlessly, Biofreeze, daily baby Aspirin in a flare become a reg strength, and a good physiatrist to make your symptoms too.

Freaking problem with TOS is that its one of several things that go together, not the only thing. Many of us have (I am guessing)

1. Whiplash - which means injured muscles & weakened zones wherein the wrong ones are overactive. Ta-da scalenes - ever ready to help out.

2. Bad posture from years of work in specific manners - eg FHP, rounded shoulders, weak back muscles, which mean pec minor syndrome comes along and so does carpal tunnel

3. Accident guys tend to have disc bulges, facet syndrome and stenosis also lurking. Freaking impossible to figure out which of these is working along with good ole TOS to make our lives a living misery.

4. So, I now think to address TOS you have to hit everything. No exceptions.

5. Another issue with TOS (for me), I became immobile, further weakening my core, my lower back muscles adding to the injuries i have.

6. Moral of story remain mobile, keep walking, doing cardio as much as possible. Keep your core strong.

Sorry Jo, wrong post quote, out of practice..

I was trying to spare everyone the details, but:

There is usually mild neck/arm pain 3/10, more of a fullness and tingling in the arm, but at the end of a long day at work, I usually start to get some weakness in my hand. If I work a regular week, my arm will get swollen, moderately painful, weak, and takes 3 days to get back to baseline. No history of whiplash or RSI.

Currently, I am back to working 3 days a week after taking 2 months off, but it has been difficult. I get the feeling that I "flare" myself up at work, and then try to play catch-up on my days off by doing Edgelow PT. TOS is certainly related to and exacerbated by work, but hard to say exactly what "causes" it since doing things around the house can also make the TOS worse.

The conventional PT that I tried was one size fits all and did not work.

The Edgelow PT program is the only thing that has worked so far - the breathing and other parts of the "Core" Program do help calm down the arm and provide relief. I have not yet gotten to the "Progressions," which focus on retraining posture and reshaping the spine and chest, with the ultimate goal of opening the thoracic outlet and decreasing nerve compression.

I am really trying to get some idea of what the range of long-term outcomes is. I.e. financially speaking, if the best that I can expect is a long slow decline in function, then we might have to make different financial decisions than if there is reasonable hope of maintaining a 3 day/week schedule or possibly getting back to normal work. My job has a little computer work, but lots of hand/arm task work, and does get stressful at time.

Any input would be greatly appreciated.

I will say, that for me (and probably many others) working & trying to heal did not work.. but I was doing assembly work speed & repetition & 10 hr days...
I already had multiple & various RSI dx's - probably all a factor w/ my TOS..
Mine is mild now & more of a myofasical pain syndrome.. but been off work since 04.
If I goof around on computer for many hours or a couple days in a row , like when I need to fix or upgrade my system, I can feel aches in my hands & elbows..
But I can stack hay & do some heavy chores, now my low back has more of an issue for those things..
I did find a really good chiro that was a healer of sorts I guess as he seemed to know what would work, and listened to what I described, and he did other soft tissue modalities too. Ultrasound, IF stim, low level laser Trigger point work...

I don't like to say it but taking some major steps now if at all possible to repair & heal will be better in the long run..

here are some easy things to try at home many times a day- if they make you worse then stop.. but don't overdo ofr force it, baby steps forward is the key w/ TOS..
http://neurotalk.psychcentral.com/album.php?albumid=422

check out the sticky threads of PT & trigger points..
But if you can locate a really good advanced/expert PT or an awesome chiro that does many things .. that will be a good thing...
Don't tolerate cookie cutter or same old generic stuff PT , run away LOL...

I had bad PT and some really good PT but I had to learn a lot myself to be able to tell the difference...but I did have misalignments from an active tomboy childhood and a few horse accidents.. so that chiro really was a plus over most of the PTs.. plus they didn't have the laser.. or the IF stim , and didn't seem to do/know much about trigger points..

Hi,

Just because others have not been able to "cure" your TOS does not mean that you can't. A lot of the times this disorder comes from gradual changes in your body's mechanics. You need to analyze every aspect of your body from your standing posture to your hip allignment to your scapular position, find abnormalities or weaknesses, and work on them tirelessly. I have had disputed nTOS for 3 years now and every single day I'm looking for ways to help it. I just want you to be positive and know that it is possible. Everybody has bad days with TOS, but with the right mindset you could reduce symptoms A LOT. Mine now feels more like an annoying itch on my shoulder whereas two years ago I could only sleep in 25 minute intervals before I would wake up in pain. Im working full time, getting in the gym, and actually living a fairly normal life.
You got this.

Thats good to know. Any specific exercises or methods that helped?

Look up Evan Osar corrective techniques for shoulder disorders. That guy is really great. Upward rotation shrugs have helped, also face pulls. And psychotically rolling my chest and subclavius on a lacrosse ball. This stuff has got me back to 80% normal, still no heavy weightlifting but I am free to mountain bike, run, box and rock climb and stay at a 1 or 2 out of ten on the pain scale. However I still do get crippling flare ups where I cant even get up out of bed. Id say once every couple months. But im hoping they will become less and less frequent until they are just gone