Something that is helping my understanding
 

Posting a link to a scientific researcher that actually seems to really understand TOS.

How to truly identify and treat thoracic outlet syndrome (TOS) - Treningogrehab.no

Take notice, tight muscles are weak muscles. Stretching and massaging constantly will likely do nothing in the long term and can be bad without strengthening.

Also "down and back" shoulder position is very bad and he provides good reasoning for that.

Worth a read for anyone looking through here and trying to understand.

I hope the best for everyone going through this and that you may find your answers. I like to share any information I find.

Best.

Hey. you are correct about stretching. though in my experience stretching can allow you to develop a little bit of permanent flexibility in your neck which actually may reduce tightness, but it will never solve anything and also it has a great chance to provoke pain. so only moderate stretching from time to time is good.

Regrading strengthening - yes it can definitely help if your problem is atrophy. again, it will not fully solve the problem but it will reduce symptoms in the long term.

but here is something that is not mentioned in your article:

1) There are actually physical defects in some cases(like mine) of TOS where scalenes
invade places they shouldn't be on - could be on nerves or blood vessels. no exercise is going to fix it, ever. these defects can also do other things like cause pain since they are asymmetrical or sunk in.

2) not all cases are atrophy cases. read about hypertrophy which can cause tightness too. in that case
i doubt sport will help but it again will reduce some symptoms...
if you have athropy though - stretching + strengthening afterwards does help a lot. like in my case. but do not expect full recovery.

3) if you have an extra rib - forget everything you read in that article. any exercise can actually damage you.

again my good sir, in a lot of cases TOS can not be cured with sport. it will come back because the root cause is still there.
that is why im considering surgery, these defects can become far less severe afterwards if you have a genius surgeon.

Best thing for Tos is resting your neck properly... huge tightness relief. Buy a chair with arm + head r est and d lay down on it. Instant relief

What do you mean your scalenes are invading a space?

The idea is that if you didn't have this problem before, and you have it now, something must have happened to cause it. And if you undo the things that caused it (poor posture), weak back, neck, etc, you should be able to loosen up the compression and continue on with life. Yes some people have extra ribs, but still, did they not live life normally up to the point of TOS?

I'm not trying to over simplify TOS, I'm just simply saying it is a slow process that got us here. Mistreating our bodies through repetitive motions, poor posture, etc. If we can undo these habits we might be able to get back to a pain free state.

Doctors make $$ off surgery so it's always a good idea to get a second opinion, however like I've said before, if you are at risk for blood clots or have already had one.. surgery might actually be your best option..

Good luck. Meanwhile I'm gonna keep training and watching my symptoms reduce hopefully.

What do I mean by invading? I don't have a better word for it so I will describe it;
you said that you have weak scalene muscles. they are not just weak,
they have atrophied and in many cases, they have shrunk in size, shifted their physical position into areas of the neck and now compress areas like Brachial plexus or a blood vessels.
training and posture are great. will it fix it in the short term, maybe. long term? that is even a bigger bet. worth the try though. in my case I feel 40% better thanks to training and posture.

That's what I believe has happened to me as well

The thing is, it's taken up til now to get to this point. A couple of months of PT isn't going to reverse it all... Even though we would love for it to, it really seems to take a long time..

40% is really good.. I'm happy for you. I can only hope it continues in that trajectory. I am probably around there as well but I am seeing improvements pretty rapidly. I'm working out harder now than I was and I am avoiding my home computer more which is hard because I love to game.

During the work week it's worse because my job is a desk job.

I still do my work outs daily. Religiously. And twice a week I do more intense workouts, sometimes 3x a week. I have to work hard to make real physiological changes.. it took me a long time to get to this point though. I spent a lot of time being inactive and playing a lot of video games, and not doing a whole lot.

So I've been in pt twice a week since probably about January? I've researched a whole lot of stuff, and ive experimented a lot. Id be interested to know what you are doing for your routine.

Thanks

I pretty much quit my routine already as I already know the greatest thing to do is a proper rest. cure will not come anymore out of my routine.
it pretty much was anterior & middle scalene stretches, + SCM and deep neck flexors strengthening

McKenzie Method: Cervical/Neck Retraction - YouTube

and this which will improve the anterior scalene(use a very thin weight):
How to workout the neck: Weighted Neck Flexion for Sternocleidomastoid Tutorial - YouTube

Do you have any shoulder/shoulder blade mobility issues? Do you strengthen your back muscles? Low/mid/upper traps? Rhomboids? Stretch lats and serratus anterior? Do you do any soft tissue work on yourself? Any thoracic spine extension? Foam roller?

Not in my T.O.S side. beside the T.O.S my left side is fine.
On the right side though... I have levator scapula instability forcing me to go into forward head position most of the time. it has something to do with the shoulders too. i am still researching but so far i found it is giving me headaches & tinnitus & burning right neck. shoulder shrug + cat-cow fixes it temporarily and my symptoms calm down by a lot. i just need how to figure out to make it permanent, but first thing ill deal with my left side T.O.S.

I wonder if your shoulder issue on the right side making you go into your forward head position is causing your scalenes on the other side to be tight causing your TOS??

TOS is so complicated. Hope I'm not over stepping.. just nice to talk to someone that is also going through this puzzling issue.

Stay in touch with how you go.

well both contribute to forward head position - but one thing didn't lead to another. Repetitive mouse motions with both hands caused this 2 separate issues. And the levator scapula is mainly a neck muscle with little roots to the shoulder. Look it up on google and tell me if it's also what's wrong with you.