r/thoracicoutletsupport

I was diagnosed with vascular TOS about a year and half ago. Found out I have TOS after dealing with severe muscle tension postpartum with my first kid (most likely from carrying around my baby and being in a hunched over position during feedings). After several rounds of unhelpful PT, I got officially diagnosed at a clinic in Denver. I was prepping to start IVF for a second baby and was warned my symptoms would only get worse and the only real treatment is surgery. Did nothing to follow up on the TOS at the time since I was focused on a successful pregnancy after several losses.

Got pregnant post diagnosis and was immediately put on lovenox during my pregnancy. I actually felt some relief for the first time in years and had a healthy pregnancy. Now off all blood thinners and pain is back with a vengeance 4 months postpartum with baby #2.

I was not happy with the care in Denver and am wondering if anyone has seen a doctor in Chicago. I have family there so it would be a reasonable place for me to go. Thanks in advance for any recs!

How can I convince my surgeon to let me go through bilateral surgery? I'm seeing a nurse practitioner on Friday which is also the day I turn 20. I feel as though I have both nTOS and vTOS, although my vTOS symptoms started surfacing this spring with eyeball pressure, cold hands, and dizziness whenever I rotate my neck on both sides. I've otherwise had nTOS symptoms since 2023 due to trash posture from excessive gaming throughout my youth. I live with my dad, aunt, and younger sister who can support me while I recover. I want the bilateral surgery since my symptoms are even on both sides, making me want to get rid of them ASAP instead of doing fk all for another three months while recovering. I want to be able to game again without my hands and arms feeling awful.

Edit: Already got a cervical MRI which ruled negative for any issues!

Hi all! Been reading all your stories and identifying with many of them!

I'm looking to understand a possible cause for a very long term (15+ years) ailment. I have pressure/tension headaches that very specifically trigger when using my right arm for specific movements, such as scrubbing dirty pots/pans, or prolonged motions cleaning a window, or lifting my arms up above my head, for example. I can lift with my arms, but almost immediately I fell the burn in the shoulders and I can't hold heavy things for any real duration. Doing overhead press, I can lift fully with my left arm and my right arm just begins to tremble and shake with even a light weight half way up.

If I overuse my arms/shoulders, it leads to waking up the next day with severe pressure headaches. The same thing occurs when leaning for long periods on my arm on the floor, in a plank or pushup position. Occasionally I will have periods of time for a few days where the arm feels "dead", until rested. And recently I can add a new symptom, a chest pain that extends from my armpit under my right pec. This symptom is coupled with difficulty breathing, what feels like a tightness in my chest preventing me getting a full breath.

I've had - over the years - a lot of treatment attempts, including physiotherapy, acupuncture, sports massage, NSAIDs, botox injections, CGRP inhibitors - MRIs, X-rays, ECGs - all of which have provided minimal relief and no solid answers. I've spent years in Neurology trying different drug treatments for headaches. But in truth, the best relief I've found is to just... not use my arms. Adjusted my sleeping posture completely (laying on an arm guarantees headaches), avoided heavy lifting or especially overhead lifting, keep my elbows tucked, etc.

I'd never even heard of TOS or nTOS until I had the idea to put these symptoms into ChatGPT, and that's lead me here, wondering if this might be an answer and what a possible solution might look like after years of "just living with it".

Hey all,

I had a DVT of my subclavian vein 2/1 at which I had a thrombectomy and was diagnosed with vTOS. I had my FRR and anterior scalene removed on 3/2. I finished up on Eliquis 2 weeks ago, physical therapy last week, and I have another follow up and ultrasound coming up on Thursday.

I am convinced I’m feeling blood clot symptoms again. I don’t know if this is anxiety induced or psychosomatic even, just because I’m nervous to be off the blood thinner and have my ultrasound. The symptoms are nowhere near as severe as the initial DVT that sent me to the hospital. But it’s the arm heaviness, weird (but fleeting) armpit pain, and minor discoloration? Or is my left arm a bit redder from being on the window sill when I drive?

I am under the impression that even if my surgeon didn’t get enough of the rib, it’s still too early for scar tissue to be impinging the vein again.

Has anyone had clots this early post op? What was the reason? Am I actually ok and suffering from medical PTSD?

Well after a few years of specialist and GPs not believing me or understanding TOS and all of its symptoms (and the hEDS crossover), I’ve finally seen Colin Bicknell’s team and they want to operate and do a First Rib Resection! It’s scary but so validating. I would love some positive surgery stories! Help me get into the right head space for surgery! Thank you so much xx

Hello, I met with my doctor today, 1st appointment, went over a lot of information, it's not clear to her, which one is worse. I don't have a ton of arm pain, no discoloration, no thrombosis, but upper chest pain and SC joint w sternum pain, inflamed Scalene Muscles. vs Pec Minor Tendon is the primary driver for my pain. Going to get a Pec Minor Diagnosis injection with Botox and see what happens. I actually might need both surgeries? Has anyone else had similar experience? Offer me any insight? Thanks

10 days today! The first few days I was still sore so I couldn’t tell what was from the surgery vs my symptoms but I’m pretty confident now that my forearm and hand symptoms from my pec minor syndrome are gone. The feeling of losing circulation is also almost diminished. My surgery was done by a hand surgeon who did a nerve fellowship and my recovery has been pretty easy, I went back to work 6 days after surgery. I wouldn’t be surprised if I develop right sided pec minor syndrome but after this I would definitely have it done again

I’m a 36 year old female with an unprovoked upper extremity dvt that so far cannot be accounted for. For the last 6-10 months I’ve had chronic pain in the left side of my neck and top of shoulder, left sided pulsatile tinnitus, and now this DVT in my lower arm ( radial vein) as of April. I’ve had MRIs, MRAs, jugular ultrasounds, a hematology work up. Nobody has once mentioned TOS, despite my job as a flight attendant which includes using my left arm repeatedly overhead and to open 200lb aircraft doors, as well as pull luggage and carry a heavy bag. After doing a lot of research, TOS feels like the explanation. Where do I go from here? I don’t see my primary until 6/3, and my hematologist until 6/28. I’m so stressed and tired and scared, and in pain. I’m currently on eliquis for anticoagulation, but I carried some heavy bags on my right side last Friday and have had agonizing pain in my left neck/ shoulder since. Any input or experiences would be greatly appreciated.

Anyone else know they need surgery but absolutely terrified they may be worse off?

I want my life back, or at least a better quality of life but my fear, and the bad stories are holding me back.

Can anyone offer advice?

Hi there! Has anyone gotten Botox injections in the anterior scalene and or middle scalene? I have a mixed diagnosis, early signs of vTOS left side (chronic blood clot on ultrasound under left collarbone but blood is able to get through) and aTOS bilateral. I got Botox on the RIGHT side though because I am right handed so therefore it is more symptomatic.

I’d love to hear about your experience… I didn’t expect it to be so painful, and my entire right arm is sore. It’s only been about 2 hours since I was discharged. It hurts to cough/sneeze. I’m just so sore, and am wondering when it will wear off.

Thank you.

It’s been over two years and I can’t take the pain anymore. It started as a tourniquet feeling with painful numbness and heaviness. Now it feels like a dozen rubber bands in my shoulders and arms are being stretched to their limit and about to snap. I’m living on Tylenol and can’t be without it.

I went to urgent care for unbearable pain at the direction of my vascular surgeons team. Urgent care said they can’t help me. They haven’t prescribed anything for pain, no referral to PT. MGH wanted me to wait on injections. I’m just stuck.

The cyanosis was originally diagnosed as dysautonomia with no real evidence. Finally got the autonomic testing which was completely normal. Now they finally suspect TOS.

I got a referral to MGH. Was going to see dr. Donahue but my vascular surgeon isn’t sure if it’s arm or central vein issue, so I’m being seen by dr panda in August. If it is venous TOS I will request Donahue for surgery.

Not only am I done with the pain, but also the feeling of isolation. No one, including myself prior to this, can understand what it is to be in constant debilitating pain until you’ve been through it. I try not to complain because I know everyone is tired of hearing about it. But damn.

I don’t know what to do until my appointment. Tylenol helps, can’t take nsaids, and heat makes it 100x worse. I’ve been ordered not to lift anything more than 5 lbs but don’t feel any better. I’m having a hard time getting through the day at work. No one seems to care. I’m just over it.

Just needed to reach out and get this out. Any advice appreciated. Thanks all.

Hi! I was recently diagnosed with TOS and went for MRI, Doppler, EMG and all the tests. There is no nerve issue, no extra rib, no vein issue, yet the neurologist told me it was probably a generic TOS due to an injury 10 years ago.

For the past 10 years Ive lived with chest pains once every few days or weeks. I developed a panic disorder and went many times to the emergency thinking I had a cardiac issue. Even though the cardiologists (3 of them) told me my heart was perfect, when my chest pains start my body reacts and the panic kicks in.. I started weightlifting to raise my back and shoulders, but yet coming from the grocery with 2 bags of produce gave me another attack. I don't know, does it look like TOS? It is a pain sometimes near the clavicle, sometimes near the minor pectoral. Is is 4-5/10 in terms of pain but sends my mind in panic mode. I am so fed up of this. Any help appreciated.

Edit: I looked at the TOSresources website and it might be pec minor in my case. Anyone has those chest needle pain?

Can people drop certain exercises that you feel helped you the most?

Whether it’s a google link, IG post or YouTube tutorial.

I haven’t been able to find a PT that understands TOS at all so I’d like to try to take action myself. More so looking for strengthening exercises then stretching - stretching makes my TOS worse and aggravated.

Thank you!

My symptoms include arm and hand weakness and a hand discolouration that gets better when arm is raised. My elbow hurt when I bend it.

An ultrasound showed that my ulnar nerve is compressed at the elbow. However, doctors weren’t convinced that it’s the source of my symptoms, especially that my hand turns reddish/bluish

I did Doppler and the following is the summary:

All arteries and veins in the right arm show normal structure and blood flow, including during tests performed in different positions. There is no evidence of blood clots or thoracic outlet syndrome, indicating a normal vascular exam.

Furthermore, my CT scan with contrast showed moderate compression with arms raised, but without the vein collapsing:

The angio-CT (performed both in neutral and raised-arm positions) shows no significant abnormalities of the thoracic outlet, arteries, or veins, and no evidence of thrombosis or vascular stenosis. Although there is a moderate narrowing with mild compression of the right subclavian vein in the raised-arm position, it is not severe, with no collateral circulation or signs of clinically significant compression.

Now I’m curious whether these tests rule out a vascular compression that can contribute to my symptoms or whether the vascular compression is something normal and that the nerves being compressed is the problem (probably being compressed in the thoracic and also at the elbow).

Is PT the treatment of this?

Thanks.

Hello everyone, this is my first time here and my understanding of TOS is very limited.

On Tuesday last week I had a stroke-like episode where I could not feel my right arm and loss consciousness several times. I went to the hospital but they only did a chest xray and an EKG at the time. Since then I have followed up with my primary care who ordered an MRI of my brain and spine, which came back normal. During the appointment I had with her, she did a basic neuro exam and noticed I am much weaker on my right side and have a cold and discolored right hand. She had mentioned thoracic outlet syndrome as a possibility, but I never really heard of it before.

Before my episode I had a two year history of neck and head pain and been diagnosed with cervicogenic headaches and occipital neuralgia. I have intermittent right sided weakness (both arm and leg), vision issues, severe brain fog and episodes of confusion, and non epileptic seizures as well. Since the episode the weakness has been much worse and I feel very off balance. I also had severe head and neck pain for about a week afterwards until my dr prescribed gabapentin. The gabapentin has brought the pain down significantly.

I’m just really at a loss for what to do. Has anybody with TOS experienced something like this before? All my tests keep coming back normal but I feel like something is really wrong. I have had a similar episode in the past but not nearly as bad. I’m worried it’s getting worse. My anxiety in general has been horrible after having such a scary episode and then starting a new medication with anxiety as a side effect. I’m just hoping somebody can share their experiences and let me know if you think we’re on the right track with TOS.

21M

So about a week ago I got diagnosed with vTOS after presenting to the ER with a swollen arm. Fortunately, I had no blood clots at the time.

The reports said my symptoms were mild, but my arm is constantly swollen, but does vary based on position. However, since then I've ceased all overhead exertion, which I believe was my primary risk factor. Outside of this, my symptoms are random mild pain, but general heaviness.

Mentally, this has been so challenging for me because I haven't been able to really speak with any experts on this. I keep coming back to this and thinking at any moment I could have developed blood clots or have one actively developing. I see posts on this sub of people with just the arm discoloration having blood clots and it's freaking me out. I'm not on any blood thinning medication, and I dont know if I have any clotting disorders.

The only thing I have right now is PT, but some of the exercises cause my veins to bulge more than they generally do. I don't know if I should be doing those, or resting.

I'm honestly just so terrified of the surgery and blood clots it's mentmentally debilitating at times. I really don't want to have to get the surgery, but for venous TOS, the internet seems to suggest it's the primary option. The ER only said I needed it if my symptoms progressed.

I have some appointments coming up, but they seem so far away for something that feels like it can change my life in an instant.

This swollen arm is just throwing my life sideways and keeping my health anxiety at an all time high whenever my mind wanders back to this. Anyone have any advice?

This is probably going to be a mess of a post, so i apologize in advance. For the past 6 weeks i have been in occupational therapy for what we thought was just general carpal tunnel. I just had my last session last week and as I was doing some of the final tests, my OT noticed some things are getting worse rather than better. Long story short, after a few more small tests, she thinks I have thoracic outlet syndrome. She sent notes to my neurologist about everything that she’s noticed and wanted me to get an EMG done. My original appointment was for June 24th but they were able to squeeze me in for today since i’ve been having more issues. I saw my neurologist today and it went the complete opposite from what i was expecting. He kept dismissing everything I was saying about my other symptoms. He didn’t even realize i was in occupational therapy, even though he’s the one that sent the referral. I could tell he didn’t look at the notes from my OT because he had no idea what i was talking about (i just want to mention that i completely understand him not knowing everything about all of his patients, since he sees a lot. it was more so like he’s never seen me before). He just wanted to talk about my tremors even though that’s not what the appointment was for.

Then towards the end of the appointment when he was finally looking at the notes, I mention that my OT thinks I might have TOS. To my surprise, he goes on to tell me that TOS isn’t even a real thing and that he’s shocked that she would even mention that. He says that no one necessarily diagnoses that anymore and hasn’t been a thing for 30+ years. He asked me how old the OT was (34) and was confused why someone so young would mention TOS. He also mentioned that a lot of Mayo Clinic Doctors have discredited TOS and something about how there’s research saying it’s not a real thing? I will admit, I am 26 years old and have personally never heard of TOS until my OT brought it up to me.

I guess my questions is, is this a common thing for neurologists to say? I’m am just desperate to figure out what’s going on with my left arm/hand. My grip strength has gone down over the past 6 weeks, so I thought I was on the right path to figure out everything that’s happening.

Did anyone in here find out that they have Eagle syndrome? And that it might be causing your pain from “TOS” which might actually be from the Eagle syndrome?