r/thoracicoutletsupport

The big one. There's a few different groups, but there's one that's the "authority" on this condition.

It's gotten a little cult-like with the Top Doc stuff. A new member comes in asking questions about providers or symptoms and you get half a dozen responses in minutes referring them to the "Top Docs" list "Did you check the files?" It's very dismissive.

These documents are not official either btw. It's just some pdfs created by current and former members. It's people's recommendations. That's. It. It's not some formal ranking endorsed by medical professionals.

Of course there are some doctors more renowned for this than others, but don't even think about going to one not on the list.

Do people really think everyone can travel 4, 6, or more hours to another state for a doctor's appointment? It's so arrogant to blindly respond, "Just go to Lum (orvwhoever). They're only a few hours away."

I've seen success stories in that group that AREN'T from one of their beloved top docs. I had a conversation with one woman specifically because we lived in the same area and I'd never heard of her doctor (and she had good results).

Hell, I've seen them shut off comments CRITICIZING top docs. One woman recently shared her experience with one of the biggest names in TOS circles and the admin posts something like, "I've decided to shut the comments off, but will leave the original for educational purposes."

Something changed in that group. Particularly since one specific admin took over. I've been in those groups for a very long time, but when one individual became an admin, the group's tone changed. She's a know-it-all. Bossy and controlling.

I've been a member of that group for years. It used to be a great outlet. People could compare stories, trade info, vent, or share a laugh over our predicament. But it's just different now and I find myself wincing whenever I get a notification from that group.

hey all, new here unfortunately…40m, ultrarunner, lifter, and stay-at-home dad to a 2 year old i carry around basically all day (including in a back carrier)…i feel like that should also count as lifting.

on 10/2 i was doing some very light strength training before a run (benching and deadlifting is probably what caused it) when my left arm swelled up, got super tight and vascular, and eventually turned kind of grey and cold. first ER ultrasound was negative. it kept getting worse to where it felt like a balloon about to pop so i went back monday and they found a DVT through my subclavian, axillary, and brachial veins, plus a superficial clot in my basilic. diagnosed with vTOS / Paget-Schroetter.

I got admitted, had EKOS/tPA thrombolysis monday and balloon angioplasty tuesday. there was severe narrowing where the subclavian passes between the clavicle and first rib. flow is better now and i'm home on Eliquis.

vascular surgery brought up first rib resection but wants to reassess in a couple weeks instead of scheduling it right away, and i honestly don't know how to feel about that. losing a rib and a long recovery sounds rough. but leaving the compression there and waiting to see if another clot shows up sounds worse to me, especially since the first ultrasound missed this one and I just feel like I’d be so anxious doing strength training or back carrying my son as if I’m just rolling the dice every time. I’m also not sure if this would change after a surgery, but I am also not very keen on being on blood thinners for the rest of my life and to my understanding surgery could help that.

So for anyone with vTOS who had thrombolysis/angioplasty first…
- did your surgeon push for FRR right away or wait and see? why?
- anyone skip surgery? how's that gone long term?
- if you had it, how was recovery? especially getting back to running, lifting, and picking up kids
- how long were you on blood thinners, and did surgery change that?
- anything you wish you'd asked before deciding?

Also obviously not asking reddit to make the call for me, just trying to figure out what other people went through and what i should be asking. thanks!

Seattle

Is anyone in here from Seattle who would recommend a facility or provider to assess for TOS? I’m running into an issue getting my PCP to send a referral for evaluation to a Vascular Surgeon. I’m seeking a provider/facility that doesn’t require a referral, or recommendations on another route for finding a diagnosis or exclusion. TIA!👋🏽

I am 36, 6’2, 200 LBs and have been dealing with diagnosed brachial plexus injury for about a year and am looking for recommendations. I am active and workout 6 days a week with a combination of running and weight training. I am a teetotaler.

About a year ago, I first started having tingling/numbing sensations that was only in my right hand that started with the thumb, index, and middle finger. At first it was quite manageable to which I went to see a doctor in January 2026 who gave me a cortisone shot in my right wrist. The pain subsided but then I felt like it came back worst and I started to feel the tingling and numbness expand in my elbow to which I went back to the same doctor and he gave me another cortisone injection in my elbow in April 2026. After that worked for a little bit of time, I really began to notice the numbness and tingling radiated from my shoulder down to my hands. I went to the doctor again this past August 2026. There, he prescribed me methylprednisolone and Lyrica. After taking those, neither worked and I feel like I’m back to square one.

The symptoms arise when I hunch my shoulders, the tingling/numbness starts to radiate from shoulder down extending to my thumb, index, and middle fingers, when I wake up in the Morning the pain radiates, if I’m sitting down and stand up the pain radiates from shoulder down. It’s all on the right shoulder, I can still lift things but I started to slow down on heavy lifting and do less weights more reps. I never had any issues with this before. I also started heavy weight training around 2024. The pain does not happen when I stretch my neck looking at the sky or if I turn my neck or when I hold my wrists over doing the traditional carpal tunnel exercises. I do not have anything direct injuries to The area or painful to touch on my right shoulder. Sometimes now the pain feels like it’s expanding to tightness and fullness on the right side of my chest and radiates down (could be anxiety).

I am writing to see if anyone can point me in the direction to find relief? Should I get an MRI? I was doing some thoracic outlet stretches the past week and not sure if that helps? Anything helps and all
The best.

Hey everyone,

I wanted to share my experience recovering from neurogenic thoracic outlet syndrome (nTOS) because there is so much conflicting information about it, and finding doctors and PTs who genuinely understand how to treat it can be extremely difficult.

This is my personal experience, but I spent years trying different approaches before finally finding a PT who completely changed how I understood my problem. Hopefully this helps someone else who is going through something similar.

BACKGROUND

I was 27 when my symptoms first started. I've always been extremely active despite several injuries and surgeries.

That suddenly changed after backpacking in Yosemite. I noticed some tightness in my trap, and the next morning I stretched my arms out and felt like I pulled a nerve.

From that point forward, I couldn't really do anything with my right arm.

I spent thousands of dollars on PT appointments, doctors, imaging, and different treatments without getting anywhere. About a year after the initial onset, a doctor hit a nerve during an injection, and that's when everything started to flare significantly.

Soon after, I became convinced that I had TOS.

Several doctors told me I didn't have it, including three well-known TOS doctors in the United States. One doctor and one PT thought it was plausible but couldn't say for certain.

At that point, I knew there had to be an answer somewhere. I eventually decided to travel to Boston to see a PT who specializes heavily in nTOS.

SYMPTOMS

·         I couldn't load my right arm with anything heavier than a pencil.

·         Severe neck tightness that could become extremely painful and was exacerbated by weight, poor sleep, stress, and the depression caused by my nTOS.

·         Pain where my chest attaches to my shoulder.

·         Nerve pain throughout the inside of my arm, forearm, neck, and wrist. I initially thought I had carpal tunnel.

·         I couldn't reach my right arm out without feeling like I was going to tear or stretch a nerve.

·         I couldn't listen to music or be around vibrations without my neck/ear tightening significantly and exacerbating my symptoms.

·         Back pain.

·         Groin, hip, and knee pain.

·         An extremely heightened sensitivity to pain everywhere.

·         Extremely poor balance and thoracic mobility.

·         Typical TOS rehab often made my symptoms exponentially worse. For example, dry needling my scalenes would cause them to tighten even more.

Looking back, I believe a lot of what I experienced was my nervous system becoming extremely reactive and protective due to the TOS and how indirectly it forces your nervous system “on”.

I could do something as simple as washing dishes and suddenly have an elbow flare. At the time, I thought I had developed golfer's elbow or some other injury. In reality, it felt like my body had become extremely good at producing pain whenever I loaded certain areas.

Thankfully, I never had significant muscle weakness.

I actually found one back exercise that I could tolerate extremely well. I would have two kettlebells on the ground, push down through the kettlebell on my left side, and row with my right arm.

For whatever reason, I could do this without reproducing my normal right-arm pain.

I gradually loaded this movement and eventually got to the point where I could row 60 lbs in one arm. I did this for over a year and stopped increasing the weight once I got here. I'm also on TRT, which I believe helped me preserve a lot of muscle during this period. Without it, I think I would have lost considerably more muscle mass.

GETTING EVALUATED FOR TOS

Eventually, I saw a Johns Hopkins doctor who ruled out the other forms of TOS (vTOS and aTOS), but he couldn't definitively confirm or rule out nTOS. I remember asking him what the treatment for nTOS actually was.

He gave me a list of basic posture and breathing exercises. Unfortunately, these didn't help me and often made me worse.

I also remember him saying that many nTOS cases are “subjective” and that some people eventually give up trying to treat it or rely on things like repeated Botox injections to manage their pain. I had a hard time believing that this was simply something I had to deal with forever. Given I never trusted our medical system and believe many doctors are incompetent, I knew there was an answer somewhere. I eventually decided to move to Boston to see a PT who specializes heavily in nTOS.

DIAGNOSIS AND TREATMENT

In December 2025, I had my first appointment with my new PT, who I still see today.

After a very thorough examination, he determined that I definitely had nTOS. More importantly, he identified what he believed was the primary driver of my problem: ribcage dysfunction and altered ribcage mechanics.

This wasn't just something he had seen in me. He told me that ribcage dysfunction is one of the main things he sees in his nTOS patients, and that a very large percentage of the nTOS patients he treats have a high degree of altered ribcage mobility.

His hypothesis for my particular case was essentially:

Ribcage dysfunction → altered breathing mechanics → excessive scalene/neck involvement → brachial plexus irritation → improper back/shoulder mechanics → median and ulnar nerve symptoms throughout the arm, elbow, forearm, and wrist

There was also another downstream pathway:

Ribcage dysfunction → back mechanics → hip/pelvic dysfunction → lack of glute firing and excess hamstring use → groin, hip, and knee pain

The idea was that when the ribcage isn't moving and engaging properly, the body starts compensating elsewhere.

In my case, I was relying heavily on my neck muscles to breathe and stabilize myself. That created a domino effect where my neck, shoulders, back, pelvis, hips, etc. were all compensating for the underlying problem. My PT specifically emphasized that he sees this pattern beyond frequently in his nTOS patients.

THE TREATMENT

The treatment was surprisingly difficult. The goal wasn't simply to stretch my neck or strengthen my shoulders. Instead, we worked extensively on breathing, ribcage mobility, positioning, and retraining how my entire body moved together.

I did a lot of very weird-looking breathing and posture exercises and some one-off work in my pec, shoulder, lat, and armpit.

I remember after my first appointment already noticing some improvement.

One of the main things we were trying to accomplish on my first appointment was getting my ribcage to actually move and engage properly when I breathed. He also worked on my neck to some extent, but he didn't want to focus heavily on it because I'd already spent years trying to treat my neck without success. His reasoning was that the neck tightness appeared to be downstream from the ribcage problem.

THE CUES

PT was hard.

I remember having a surprisingly difficult time simply breathing in through my nose and out through my mouth while following all of the positioning cues.

Some of the major cues I used included:

·         Breathing in through my nose and out through my mouth while trying to engage my ribs and obliques rather than excessively using my abdomen.

·         Trying to push air through my back and feel the air move all the way down my back. This also helps loosen your back out.

·         Tucking my tailbone/hips/pelvis.

·         Getting my arms fully extended while retracting my shoulder blades.

·         As I progressed, moving my hips in specific directions depending on the exercise. This is important so I might add a comment later, but for reference, doing this cue with the two below is what causes the hamstrings to fire less and the glutes to fire more.

·         Pushing my back in the opposite direction of my arms. When doing an exercise where I had to lie on the ground, I needed to make sure my back was flat on the ground. When I moved my arms out while tucking my pelvis, my back would want to lift up from the ground, so in the beginning my PT just had me focus on getting the upper and lower part of my back to be flat at bare minimum.

·         Keeping my chest up during certain exercises to help engage the pec minor and improve the mechanics around the shoulder.

·         Keeping my neck straight.

·         Keeping my ribs down.

There were many other cues depending on the exercise, but those were the main ones.

When I started, I could only focus on the major cues. It was too damn hard doing everything at once. Over time, I added more as the exercises got more complicated.

THE FIRST FEW MONTHS

I flared a lot during and after PT. My body was so accustomed to moving incorrectly that when I tried to change those patterns, it would immediately overuse certain muscles and fail to engage the ones that were supposed to be doing the work. Despite that, things were improving.

A couple of months in, I hit a major brick wall.

I don't remember what cue it was specifically I had a hard time doing, but at one point I ended up spending 8+ hours on a Saturday day trying to teach my brain and body how to move in ways that weren't natural to me to get that cue down. I wouldn’t say everyone is going to be in my boat though. My PT described my case as being around an "8/10" in complexity because of how hard it was for me to do basic movements and cues.

It was exhausting, but eventually, I got the cue down, and things started moving forward again. This time, it was much faster though. It was as if my body learned to move how it was supposed to.  

RETURNING TO THE GYM

In February 2026, I started lifting again.

I incorporated the movement and breathing cues into basically every exercise. At first, I had to think about the cues constantly. A couple of months later, I did get tired of doing the cues on some major lifts like Bench. It did flare up my median nerve in my arm and tighten up my neck and collarbone a lot, but honestly, I just wanted my bench back up, so I didn't really care too much. Things settled by the time it was my next bench day anyway for the most part. Around this point in time, I had pain, but my sensitivity to flare decreased significantly. Personally, I was very happy living with pain knowing that I could live my life normally and do certain things at the gym without making things worse. That sounds like a sad reality, but much better than rotting in bed all day.

JULY 2026

By around July, most of my symptoms had settled significantly. I could watch movies and listen to music without immediately causing my back and neck to tighten up. Life started becoming normal again. I eventually moved back to my old town.

I still had some limitations. For example, sitting on the couch for too long could easily flare my back, and increasing weight too quickly at the gym could cause symptoms. But compared with where I started, the difference was enormous.

OCTOBER 2026 — WHERE I'M AT NOW

I'm writing this in October 2026. The back issue that used to dominate my life seems to have largely gone away. I can still flare myself at the gym if I’m not careful, but I'm otherwise able to live a normal life.

My PT currently estimates that my ribcage issues are around 65% resolved. I don't need to be 100% perfect if I can live my life though I am still working on improving hard.

One thing I've come to appreciate is that I'm much more aware of how my body moves now. I can feel certain parts of my body moving that I never noticed before. It's almost mentally engaging making sure my posture and positioning are correct. Most of it happens naturally now, though. I don't have to consciously think about every single cue anymore.

The frustrating part is that my body can still be somewhat unforgiving. If I'm stressed, don't sleep well, or push myself too hard in the gym, I can feel my body start tightening up in the same TOS-related areas and sometimes flare. I think this is due to my nervous system activating because I want to breathe with my neck more like I used to.

When that happens, I go back to the basics:

·         Sleep.

·         Hydration.

·         Breathing work.

·         My PT exercises.

·         Getting my movement patterns back in order.

·         Not aggressively loading things when I'm already irritated.

This is the nature of how chronic pain begins to resolve according to my PT though, so at least that's encouraging.

WHAT I WOULD TELL SOMEONE WITH nTOS

If you're currently struggling with nTOS, the biggest thing I would say is:

Don't automatically assume that the area that hurts is the root cause of the problem.

For years, I focused on my neck, scalenes, shoulder, nerves, etc. because that's where I felt the symptoms.

But in my case, the problem appeared to be much more global.

My PT's experience is that ribcage dysfunction and altered breathing mechanics are extremely common among the nTOS patients he treats, and in my particular case he believed they were a major driver of the entire chain of problems.

Changing my ribcage mechanics and breathing completely changed how my neck, shoulders, back, hips, and nerves behaved.

That doesn't mean everyone with nTOS has the exact same problem. But if you've tried conventional TOS rehab repeatedly and keep getting worse, it may be worth finding a clinician who looks at your entire movement system rather than just the spot where you feel the pain. I spent years being told that my symptoms were either not TOS or that there wasn't much that could be done about them.

Today, I'm living a mostly normal life.

I'm still not 100%.

But considering where I was a few years ago, I’ll take it.

EDIT 1: It looks like I had a different account signed in on my computer, which I used to post this thread from, so I am going to respond to the comments in order from my normal Reddit account (No_Presentation1212) using my phone shortly.

Hi all, I'm having issues with posture.

When I use rounded shoulder posture, TOS obviously doesn't have a good time.

BUT when I use good shoulder posture with my shoulders back, everything in my arms gets so much worse. My hands and arms turn purple rather than being pale, get much more numb and tingly, and fine motor goes to absolute shit. Can't lift my arms to be parallel to the floor. Muscle pain and pressure feeling gets much worse in the armpit to upper chest area.

I've been doing upper back and shoulder PT for about 6 years for general shoulder issues, so I don't understand why this would be such a problem and why I'm still so weak.

How do you guys deal with this?

More medical details in comments

Hi everyone,

I’m 23F and I got “kinda” diagnosed with nTOS. We are still in the process of confirming it, but both of my last doctors told me they are 99% sure. I wanted to come on here and ask for advice. It has been about a year and a half since I’ve been dealing with this pain, it came out of nowhere… I wasn’t active at the time, I wasn’t playing sports, I was just in school studying hard. One day I woke up with a bad pain on the top of my shoulder going down my arm to my hand.

In the time this started, I have gone to 6 different orthopedic doctors since a lot pushed me off because my scans were normal. I’ve been to 3 ERs with no answers or relief (the drugs don’t work on me… the only drug that helped at the beginning was prednisone and they won’t give it to me again). I had x-rays and MRIs of both my spine and shoulder that came back normal. EMG perfectly fine. Now after waiting 2 months for an appointment I’m finally trying injections on Monday. Lido in pec minor and an SSNB. What’s after this? Not sure.

I did physical therapy for about 2 months and I know that’s not insanely long but that was my plan. My PT told me my mobility is back to normal and that’s the best they can do, that the pain won’t stop just from PT.

So now I’m stuck. I want something sustainable that’s actually going to fix whatever is going on. I don’t know how long the relief from either injection will last and I’m going to try PT again, but I really need a solution. I see on here that surgery for this isn’t the best idea and now it’s affecting me mentally. I am in unbearable pain. I cry at work multiple times a day, it’s hard for me to even be a good worker because a lot of the time I have to ask my coworkers for help because of my pain level. Nothing helps it. And it’s constant. I go to sleep with it, I wake up with it. This month has been an all time low for me, pain level 9/10-10/10 almost every single day.

I should also mention, last Thursday I had symptoms I’ve never experienced before my right hand got really pale and cold. I asked everyone to compare and they said the same thing. I don’t know if I’m just going crazy and overly freaking out from the pain, I’m just scared my problem is getting worse and, again, I don’t know where to go from here. Anything will help. Thank you :/