r/thoracicoutletsupport

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.

I’m 27F, used to be active but slowly have been getting worse, fatigued, and weak.
My vascular surgeon said there’s no need to rush into surgery when I told him I was highly considering it. I also have other health concerns I’m working out with doctors so I don’t even know what caused my TOS yet, they said my anatomy is just naturally narrow but I wasn’t a big sports player for long, just a few years of tennis.
I have bilateral aTOS and early signs of vTOS due to an old blood clot under my left collarbone, but blood is able to flow through for now…
I’m in a lot of pain daily and PT has made it a lot worse. I feel like I wasn’t in this much pain before starting it.
I have to sleep a very particular way, on my back only, two pillows elevating my arms so they don’t fall asleep, and pillows supporting my neck because I can only comfortably rest it to the right side. Left hurts too much.

When did you decide enoughs enough?

So I was finally diagnosed with TOS today. The doctor said I have all 3- nTOS (didn’t show on an MRI but shows on a nerve conduction study), aTOS and vTOS. My vTOS is the worst but only slightly higher risk than an average person for blood clots.

I am obviously relieved to finally have a diagnosis but I also feel a bit sad for a few reasons;
- I have private healthcare through my husband’s job. my doctor said if this was on the nhs there’d be no physio or operation. I’d just be given a leaflet. This almost makes me feel a bit guilty and like I should just be getting on with it
- he said my aTOS is not bad and not much more than an average person might have. my vTOS is also only slight and doesn’t increase my chance of getting a blood clot much. So maybe I am just being a bit dramatic about it
- he said I need 6 months of physio and then probably will need the operation. I have other conditions he suspects but we need a stepwise approach. The idea of physio, then surgery, then more physio sounds really awful but so does living with this condition

Just trying to gauge how long / painful the recovery will be. I’m having surgery end of May and it just seems like rib removal would be super painful?

Is that the case? What’s it like in the first few days following surgery? Month…?

Any insights are greatly appreciated

I was first diagnosed with carpal tunnel then I was told it was as thoracic outlet. I’ve been to pt, did nothing for me. Injections in the wrist and the scalenes have not helped. My ears flush and get hot whenever I massage my scalenes. When I do certain stretches blood rushed to my hands, and everything gets hot. On top of that I also can’t grip small objects like nail clippers to utensils for more than 30 seconds without getting numbness. Thumb opposition also causes numbness, is that typical with Thoracic outlet. I was told I have NTOS, not vascular but the rushing of blood has me wondering.. I also have no pain, just numbness. If I massage the muscles I can feel that they’re sore but they never hurt otherwise. My elbows will hurt from time to time as well, but nothing serious.

Hi, I have vTOS and bilateral aTOS confirmed by a vascular surgeon. I posted in another group asking about some bloodwork, mentioned the TOS in the post, and someone was extremely adamant that TOS is a TikTok disorder and I don’t have it. Like, replying to every comment saying “you don’t have vTOS”
Obviously this is a troll or someone uneducated but it does make me wonder, is TOS a universally accepted diagnosis, or is it controversial at all?

When I woke up and laid in bed this morning, all I could hear was my blood rushing, pounding in my right ear. So glad my resection made it so that I don’t get it on my left side anymore, but I’m laying in bed after work and again I can only hear pounding and rushing and in my right ear.

My surgery was late October, so the soonest I can get the other side done (assuming 0 urgent surgeries ahead of me) is late October.

I can’t wait to not be lopsided anymore 😂 and relax without this constant noise!!

Hi All,

I was diagnosed with TOS a few months ago. My symptoms started suddenly, after a single kayaking excursion. I have been doing PT religiously for about 10 weeks but it's hard to detect any progress. I did get a diagnostic injection of anesthesia into my anterior scalene muscles but this had no effect on either my shoulder pain (especially when inhaling) or arm neuropathy. Am I just being impatient? Have people had success with PT?

thank you kindly,

A.

Will this also check if arteries are being compressed, meaning covering both vTOS and aTOS?

i can't sleep well and wake up in 7-8/10 pain. HELPPPPP

I got the trifecta surgery for NTOS done 4 months ago. Everything is going well, yes it hurts like hell and it’s hard but I’m so happy I have done it because I already seriously improved in a lot of things!

I also started with physical therapy 2 months ago. Everything was going well and I improved almost after every visit! We did some things I got from the hospital but she was also massaging my shoulder from the back and that helped me a lot with pain and how far I could move my arm. She listened really good to me and was super careful. Always felt a little bit of sourness the day after but no pain nothing. Unfortunately she got a new job elsewhere so she needed to go but she promised me she would find a good colleague to take things over when she is gone.

Well today was the first day I went to that guy. He didn’t do the things she did and in the beginning I thought well there are different kinds of doing things, to stretch the muscles etc. Also he said at first he wanted to watch and feel what I could and couldn’t do. Well he did a lot… a lot of stretching in different ways but nothing hurts when it was happening. So I was thinking all well. Because my doctor kept saying nothing needs to hurt! But he did one thing when I was laying on my side and he sort of had my arm/shoulder in his hand and I just needed to relax and he was moving it. I got a sharp pain in my chest and almost felt like I dislocated something. He said it was normal, nothing dislocated it just ‘feels like it’. He took my shoulder in another kind of way and that feeling was gone.

After he was done it felt oke, didn’t had pain and it kind of felt loose.

But when I was at home for 2 hours the pain began. I’m literally crying. I have so much pain in de back of my shoulder, but also my spine around were they took the rib, it hurts so much! Also at the front everything feels extremely tight it hurts and even breathing is a bit difficult just like I had the first few weeks. Also have a very weird almost pushing sensation under my armpit/ribcage. I feel horrible! And I feel so stupid that I didn’t open my mouth and told him NO! I only thought wel ‘trust the process’, because I can be someone who can get mad/don’t trust things when it’s not going like normal. But I really hate myself atm for not speaking up, I’m in so much pain, my nerves feel like they are burning.

Tomorrow morning I’m going to call them about it because this is not oke. I trusted him and told 100 times things need to be extremely slow and he all knew that he said because otherwise I could flare up. He seriously got my trust with saying that.

I’m seriously mad, sad and anxious…

Sorry about my rant, I really needed to get it off my chest😞

Hello all! I have posted a couple of times asking for advice on how to deal with the pain of my TOS. Unfortunately, today i was referred for surgery. I’m really scared. The surgery im getting is a Pec Minor Release / Resection. I would love any advice or guidance on how to get through this. Or just some words of encouragement because im horribly anxious.

I was officially diagnosed with TOS this year and I’m meeting with a specialist in July because they can’t get me in sooner. Curious if anyone else gets tingling/pins and needles in the face?

Trying to get back into IT and need to figure out a sustainable rig. Planning to use voice (Talon/Dragon) as much as possible but still need physical input options.

Even a vertical mouse triggers me, so I'm especially lost on the pointer side.. trackball? Stylus tablet? Something else?

For keyboards I've been looking at the Svalboard, Glove80, ZSA Voyager, and Kinesis Advantage. Leaning toward pairing whatever I get with a keyboard tray for better arm positioning.

What's actually worked for you?

Hey I’m hoping someone can maybe help. I’m about 2 and half weeks post op and I pretty frequently get a shooting type pain through my elbow. Is there anyone else that has experienced this? If so has then been anything you’ve done that’s helped it? It’s very annoying and constant.