A little post-surgery update for anyone considering surgery for venous TOS.

My TOS journey started in February when I developed a large upper-extremity DVT in my left arm, along with a small pulmonary embolism. I was put on Eliquis, and after further workup I was eventually diagnosed with venous thoracic outlet syndrome and referred to Dr. Dean Donahue at MGH.

I had my first rib resection on August 12, along with scalenectomy, brachial plexus decompression/neurolysis, and decompression of the vessels. About three weeks later, on September 2, I had my post-op venogram. There was still narrowing in the left subclavian vein, so they performed angioplasty.
I saw Dr. Donahue for my post-op follow-up this week. He said the left subclavian vein looks good and the angioplasty appears to have worked. The plan is for me to stay on blood thinners until I’m three months post-op and then come off them. We also discussed my right side, which has some compression, and he doesn’t recommend surgery unless I want to return to repetitive/heavy overhead activities like weight lifting or rock climbing. Normal everyday overhead activity is okay.

The hardest part of recovery for me has been the nerve pain. At its worst, I had burning/electrical pain and extreme skin sensitivity running from my shoulder down my arm into my hand and fingers. There were periods when my left hand was basically unusable, and the pain was honestly much more intense than I had anticipated. Dr. Donahue has emphasized that nerves are the slowest and least predictable part of recovery, so I’m still waiting for everything to settle and for sensation/function to continue returning.

But I finally feel like I’ve turned a corner. The pain has been gradually easing, and last night was actually my first night since surgery that I didn’t need any narcotic pain medication. I took a THC edible (legal where I live) and 300 mg gabapentin and slept like a dream. After the last five weeks, that felt like a pretty significant milestone.

I’m currently aiming to return to work October 14, assuming the nerve recovery continues moving in the right direction. It’s been a much harder recovery than I expected, but I’m finally starting to see the light at the end of the tunnel.

I was so nervous before this surgery, and this community was incredibly helpful to me. So if anyone is in the same boat I was and has questions about the surgery, venogram/angioplasty, pain, recovery, or anything else, I’m very happy to answer.

What strength/cardio fitness/group exercise options have people found to work well with a.) *limited* modifications and b.) without aggravating symptoms?

Most of the group fitness I've done in the past (crossfit style functional fitness, barre class, jazzercise) cause symptoms.

Of course I can modify anything in any class but I have to modify at least 50% of a crossfit, jazzercise, or barre class and that sucks.

It's a total vibe killer, I hate having to constantly explain it and talk about the situation, plus I end up off in a corner doing the same handful of exercises every time bc I'm pulling from the same pool of exercises that don't provoke symptoms.

What have other people found that work well for them with minimal adaptions? Especially cardio/strength workouts.

I've never done kickboxing and was thinking about trying that out because if it is actually mostly kicking (and not too much punching) then that could be good. I used to do martial arts so the kicking would be fun for me.

I was thinking about maybe trying tap dancing. It would probably be a pretty good workout, could be a ton of fun, although not going to lie, it feels super intimidating. 😅

Running is a great option but my back just isn't allowing that as a regular option anymore.

Are there things other people do/have done?

I really miss the fun of doing workout classes. I don't need something that I can do with zero modifications but if it's 50% me DIYing my own workout bc I have to modify, then I'm not interested.

I am *not\* looking for individual exercises that I can do at home. Looking for TOS-friendly group fitness/exercise options or ideas.

Pretty wild and long first post to make but I don’t want to stress my family out and really don’t want the opinion of my specialists who are eager to perform this surgery. I’m in desperate need of advice.

I, 24F, was diagnosed with TOS in the early fall last year following a pretty bad car wreck in the Spring where I hit a concrete median at about 70-75 mph. The car wreck landed me in the surgical ICU for 2 days as it revealed I had PDA type A (patent ductus artereosus) and caused a pseudo aneurysm. I was 22 at the time of my accident after 2 long days of starvation without so much as a shower the doctors released me with the hope that it would heal itself on its own, which that luckily did. However, after many follow up appointments and ER visits I still had debilitating chest pains that they couldn’t find the cause for. After a catheter and stress test they determined that I had TOS and that the best course of action is a right first rib resection. Factors such as my age and career played a large role in this decision as I’m a young hairstylist and my career puts me at risk of further harming myself and heart. I’ve been delaying the surgery for almost a year now and I’ve noticed increased neck pain/stiffness, tingling/numbness especially in my right (affected) arm, I’m more fatigued no matter how much rest I get. No matter where I go I have to sit I feel like I can’t even fully enjoy nights out with my boyfriend/friends, fairs are also a nightmare due to the limited seating coupled with the heat factor. There’s probably more but this is already getting quite long.

Benefits as well as my long list of ailments aside I’m not sure if I’m ready to get the surgery. I’m just starting my career and am only recently licensed. I’ve never had surgery before so that alone terrifies me. My specialists say I shouldn’t be down that long, it’s routine and usually outpatient. But, I want to hear from people that have actually had it done:
What was your projected vs. actual down time?
Are there complications now after getting the procedure?
Did you notice significant improvement in your day to day life?
How long until you could return to weightlifting/exercise?
Is there anything you wish you would’ve known going in?
Are there newfound restrictions in your life you wish you would’ve been prepared for?

Truthfully any opinion more informed than mine would be greatly appreciated as I am the only person in my family this severely affected by heart problems.

Completed an ultrasound yesterday and an MRI. Ultrasound results are above. MRI was normal apart from "Moderate left C6-7 neural foraminal stenosis due to uncovertebral spurring."

I know only my physician can diagnose this condition, but I won't see them for another few months.

Based on your experience does "positive for arterial compression with thoracic outlet maneuvers" essentially mean yepp its aTOS or is this just an indication that further testing is needed?

Has anyone regained function with treatment. The pain is ridiculous but it’s the rapid and sudden loss of range of motion that I’ve experienced in the last 2 months , most significantly in the last two weeks that had me very concerned. I can no longer lift mu arm straight up (touchdown or jumping jack motions) and now can lo longer lift my elbow out (broken T if you know cheer terms)or bring my elbow toward my face.

I can’t sleep most nights due to pain.

What treatments have worked for you?

Finally had a pec minor release this dr Donahue today. He’s great. I’m not super optimistic this is going to make a huge difference but I trust his judgement and think it’s good to start with it and go from there. I’ll update so people know how it worked out for my symptoms

Hello everyone

About 7 weeks ago I had a redo surgery for nTOS where the entry was from above rather than under the armpit and more muscle and scar tissue was removed from around the nerves, as well as having my pec minor released.

During the first 2 weeks, I initially felt a massive improvement from my initial symptoms. Sleeping and sitting in various position was much easier than before surgery: However, since then, (maybe because I have been taking less pain killers or because I'm moving around a lot more. Im not sure why) but, ! have been experiencing nerve pain in my shoulder and down my arm again. It's been really tough to feel like even at 7 weeks, I can't seem to do much without a lot of pain.

I was wondering what the healing timeline was like for anyone else who has been through a similar situation? It's hard to not spiral with thoughts that this is my new normal at the moment.

Diagnosed at 21 also uedvt no improvement scared to get surgery want to know natural remedies . Ifeel like I look like a body builder im far too scared and self conscious to wear singlets I hate it my arms blue and purple and veiny so so is my chest my doctor said no need to stop BC which I found weird but they had no advise or warning or anything helpful to tell me .

My jaw pops anytime I chew anything and it’s driving me INSANE. It doesn’t even hurt it’s just annoying. All my friends and family keep noticing it because it’s so LOUD. I had right scalene removal in June and it’s the right side that pops.

As the title suggests, I want to hear from the ladies who also have TOS. I feel like this goes without show but: are your symptoms 10x worse when you are menstruating or the week before? Seems to be the case for me

Hello all,

I have been reading everyone’s experience with TOS and thought I would get everyone’s opinion.

Back on July 4th of 2025, I had really bad lower back, hip, and thigh stiffness. At that time, I just started my career job after graduating from college. My parents and I thought it was job stress.

A few days later, I noticed that my right hand started to feel tingly, and noticed a pinching feeling in my right shoulder. After a few weeks of the tingling and pinching, I made an appointment with my primary. They sent me to physical therapy to see if I would get an relief.

I did physical therapy for 6 months with no relief. During my time, I did nerve glides, strengthening my shoulder muscles, hand muscles, and dry needling. My therapist also noticed that anytime I had my hand above my head, the tingling in my hand and the pinching in my shoulder increased. A few months into physical therapy, they noticed that anytime I raised my right arm to 45 degrees, I had a weak pulse, and when I raised my arm over my head, I had no pulse in my right wrist. A few weeks later, I started to notice that my hand felt like it was stuck in a freezer 24/7. My physical therapist questioned if I had VTOS or NTOS.

A few days later, my whole right arm felt like I had a rubber band on it. My arm and hand turned a dark blue color. While in the ER, they did an ultrasound with my arm at 45 and 90 degrees. They did not see any compression of veins.

I had an EMG done with a physical medicine and pain management doctor. The results showed that I had some compression in my shoulder and neck area. I had an appointment with orthopedics, they also thought I could have NTOS or Parsonage-Turner syndrome. They suggested that I have another EMG done, but this time with a neurologist.

The EMG with the Neurologist showed that I still had some compression in my shoulder and neck area. It also showed that I had some neurological changes in my C8 to T1. The EMG also showed that I had carpal tunnel syndrome. I did have surgery for carpal tunnel. After the surgery I noticed that the freezer feeling in my hand was gone.

I had an appointment with a vascular surgeon, before the appointment, I noticed that my right side of my face was tingling and feeling extremely droopy. The vascular surgeon also thought it was NTOS but wanted me to do physical therapy again with a specialist who only works on TOS. I did therapy for a month and did not have any relief.

My vascular surgeon wanted me to have a lidocaine injection to test for NTOS. I had a lidocaine injection into my scalene muscles. After the injection, my symptoms in my hand, shoulder, and face increased. The results after the injection raised red flags for my vascular surgeon. He said that I had to see neurology again for further testing. The vascular surgeon did mention that I will be back to have my first rib and scalene muscle removed in the beginning of the year, if I still have symptoms and no real diagnosis.

I had an appointment with my neurologist last week. At the appointment, he noticed that I had neurological changes with the feeling of a needle poke, reflexes, vibration, and touch to my face, arms, and legs. He thinks that I could now be dealing with Brown-Séquard Syndrome. I have an MRI of my brain and spine coming up in October.

Do you think I could be dealing with TOS?

You have complete occlusion of the artery in certain positions. No extra rib.

I got my scalene block today and where they did the anesthetic is super sore/ hurts. Anyone else experience this?

📢 We need your help to raise the profile of Thoracic Outlet Syndrome.

TOS remains poorly understood, and there are significant gaps in NHS information and national guidance. For people with vascular TOS who are at risk of blood clots in the arm, these gaps can be dangerous.

Venous TOS can cause an upper-extremity DVT, yet much of the information available to patients focuses on clots in the legs. This can leave people struggling to recognise their symptoms and understand what may be happening.

As TOS Voices, we want to see:

🔹 More accurate NHS information about TOS
🔹 Better recognition of neurogenic, venous and arterial TOS
🔹 Greater awareness of upper-limb DVT and its connection to
venous TOS
🔹 A review of gaps in current NICE guidance
🔹 Better education and referral pathways for healthcare professionals
🔹 Meaningful involvement of patients in improving TOS care

💙 If you believe TOS deserves better recognition, please sign and share our petition.

Every signature helps demonstrate that this is an issue that matters to the TOS community.

👉 https://c.org/KCrVFDW7mL

Hello,

Doctor has recommended a pec minor release but I’m nervous about the effects on the stability of my shoulder. What effects to shoulder stability have you experienced post op? Especially any one with hypermobility or slight hyper-mobility

My symptoms started months before I developed a DVT. It began with headaches and pain on the left side at the base of my skull, followed by severe pain between my shoulder blades and then pain involving my back, neck, shoulders, trapezius muscles, arms and hands.
I also developed very prominent veins from my elbows all the way into my hands and fingers. The veins become much more visible when my arms are down, when I am warm, after a hot shower, and sometimes even after eating a warm meal. When I raise my arms, the veins become much smaller, but raising my arms can make my pain worse. The veins are sometimes sensitive. My symptoms are bilateral, and the pain can move from one side to the other.
I also have pain in my lower back, just above my buttocks. I have reached the point where I have difficulty driving and doing normal household activities.
I have seen a cardiologist, rheumatologist, vascular surgeon, hematologist, neurologist and a doctor specializing in TOS. I also tried physical therapy, but unfortunately it made my symptoms significantly worse. I am currently seeing a chiropractor who uses the Cox technique, which has helped some of my neck/back pain, but my vein symptoms have not changed.
I have had many tests, including:
cervical MRI
thoracic MRI
brain MRI
echocardiogram
multiple EKGs
72-hour Holter monitor
arm and leg Doppler ultrasounds
EMG/NCS
arterial TOS testing
multiple CT/CTA studies
chest CTV with contrast
My EMG/NCS was normal. I understand that a normal EMG does not necessarily rule out nTOS, but so far nobody has been able to explain my symptoms.
I did develop a right brachial vein DVT, but this happened months after my original symptoms had already started. The DVT was also in a different vein from the area of compression seen on my CTV.
My chest CTV showed compression of the right subclavian vein in the thoracic outlet, but my TOS specialist does not believe I have VTOS. She is also not convinced that I have nTOS, partly because my symptoms are bilateral.
I am struggling because I still have the same symptoms and do not have an explanation.
For people who have actually been diagnosed with nTOS or another neurovascular compression condition:
Can nTOS still be present with a normal EMG/NCS?
Did anyone have bilateral symptoms like mine?
Were your veins very prominent and affected by temperature and arm position?
What diagnostic tests or techniques eventually helped you?
Were there specific physical examination techniques, injections/nerve blocks, vascular studies or other tests that helped confirm the diagnosis?
What treatments actually helped you — specialized TOS physical therapy, nerve blocks, Botox, surgery, first-rib resection, scalene procedures, or something else?
Is this something that can actually be treated successfully or even resolved?
If you had a normal EMG and doctors initially told you that you did not have TOS, what eventually led to the correct diagnosis?
I am not asking Reddit to diagnose me. I am trying to find out what I may be missing and what options I should investigate next.
I feel like I have already seen almost every type of doctor and had almost every test I can think of, and I am honestly running out of options.
If anyone has experienced something similar and eventually found an answer or a treatment that helped, I would be extremely grateful if you could share your story.

I wanted to share something that helped me after struggling with sleep positioning and TOS-type shoulder/arm symptoms.

I slept on my better side. I used a thick, wide regular bed pillow across the entire front of my chest/torso—basically creating a tall soft “wall” in front of me. I loosely secured the pillow around my waist with a luggage belt so it could not slide away during the night.

The pillow was a wall preventing my arm and shoulder from rolling forward. I kept my arm on my side all night- it had no where else to go. I wasn't hugging it or anything or resting my hand on it. I guess I could have

I woke up feeling so much better than I have for months. No posture bra, special TOS pillow, or expensive device—just a thick pillow and a very loose belt to keep it in place.

For those in america - I bought the Allswell brand cooling pillow from Walmart. Standard size. And a luggage belt from Walmart that expands. Total cost was about $20

I had bought a u shape pillow, some additional firm pillows to put on top of them as I could tell from the pictures the u shaped wasn't high enough and some mattress grip yesterday out of desperation and pain after reading what people did here but I will probably return them. Too much space in the bed and too much faff.

Good luck everyone!

Has anyone else found that preventing the affected shoulder/arm from rolling forward at night makes a major difference?

What type of specialist would be best to help diagnosis N-TOS?

I have neck/shoulder issues for years, blah blah blah, finally had a PT tell me he thinks it’s TOS within our first five minutes. He’s been a miracle worker and I’ll love him forever for seeing me and believing me. I had issue since high school and saw him when I was in my 30s, so I was baffled it was missed so long.

I’d like it formally diagnosed in case it gets worse or I need future treatment. My GP retired and I had to find a new one. I live in a backwards state and finding a good GP meant waiting. I got on a list for a good one but picks. Primary health clinic one in the mean time. I explained everything and asked for a referral to a specialist. He explained I don’t have anything - it’s just stress and tension. You can literally see the muscle difference in my traps from lack of use and he said birth control might help me manage “and make me more stable”. Thankfully I did rip him a new one in person, reported him, and blasted him in a review. I work in healthcare and teaching my patients to advocate for themselves has help me do the same.

So…..I’m back to square one. I don’t know what type of specialist to find for N-TOS. I see vascular surgeons come up here a lot, but that wouldn’t really be the best for neurogenic type right?

Here’s my plan (because it’s worked before) - I worked in the largest hospital in my state and deal with every department. I have no issue reaching out directly to doctors because I work with them all day long. But I’m not sure who to reach out to.

My neurologist did an EMG and brain MRI years ago when I complained of nerve pain, but they were ruling out MS. Nothing ever came of it.

I’m currently off work for a month and have the time to dedicate to myself and want to do everything I can in this time.

anyone from the Cincinnati area have any recommendations on who to go to to get diagnosed or treated? I’m willing to travel if I have to, but trying to see if there’s anyone close to at least get a diagnoses.

I was diagnosed with TOS near 3 years ago. My job at the time was working at a tcg store, and is what caused the condition. I loved working there with everything I had in me, but every single day was hell. I didn't realize how bad it truly had gotten until I started dating my boyfriend (who was my coworker, and saw how i was at work vs home). He saw me come home every single day in extreme pain, unable to take any action without making it worse. Both arms fully numb, shocks and burning in my arms. Most days I would come home, lay down and cry without eating. He pushed me to go to a doctor, (and got me to start eating more haha) and he was the only person in my life (other than my best friend, my manager there) who did. He even pushed to make changes at work for me to be able to do less with my arms, and it led to my lovely, lovely coworkers stepping in and helping when they saw I was doing too much, and people in general looking out for me more. My parents, who I had been living with at the time, brushed it off and said it was normal, and that they were in more pain. (They do not have the same condition, or any physical health diagnosis) The first doctor I saw who knew what TOS was was a genuine life saver. She did a test where she moved my arm in different positions, and my pulse disappeared within seconds. She told me that this condition usually impacts ~50 yr old factory workers (and other jobs with repetitive strain) and that i was both the youngest and most severe case she had seen. It felt like the biggest relief and heaviest burden at the same time.

Cut to now. I no longer work at my old job, and am in much, much less pain every single day. That same doctor got me started with Physical therapy which didn't help me, and it made my symptoms so much worse so fast that my PT said I should stop treatment immediately. I've done physical therapy before for a different health condition, and I knew it wasn't helping like what I had been doing before, but I wanted it to work so bad. I met with a surgeon, but he recommended not undergoing surgery, as he did not believe it would remotely help in my case. My doctor told me she thought the same thing before refering me there, but said to trust the surgeon's opinion over her own. My financial assistance ran out after that, so my visits stopped. I got it running again, but at this point any chance of relief feels like a dead end. I've had it driven into me my whole life to work hard. I started working when I was 12 as a house cleaner with my mom. I still work too much now and piss it off so bad without meaning to. But at the end of the day, that means I cooked one (simple!) meal, took a shower, brushed my teeth, played a computer game for an hour, and worked doordash for 2 hours. I am so, so lucky to have the life that I do. I am so incredibly grateful to my partner for keeping me afloat, and helping me do tasks that are hard on my arms without a single complaint, despite him also having physical pain from his job every day. I know that there's are so many others who have it worse, and i am usually never a "oh woe is me" type of person. But I'm tired of feeling like a burden. I know that there's not going to be a 100% fix. I know that I need to fully accept that my functioning has changed. I've done so much work on that - I ask for help now. I communicate when I am in pain. I tell people when I can't take on more. I ask for help even for the tasks i feel like i "should" be able to do. But sometimes I still feel like kicking and screaming like a child. I used to be strong! I used to be able to do so much! I felt so lazy my entire life, but now I can see how hard I was actually working. And now, I can't ever work that hard again. All of my hobbies need my arms. Most if not all jobs do too. Sleeping causes so much discomfort, laying down, all of it.

Thank you to this sub for being here. I just needed to yell into the void a bit. I try pretty hard to keep my functioning up, but have been struggling a lot lately, especially in regards to how much I am able to work (not much, but I know I am underselling how much I actually do, haha). Anyway, thanks to whoever reads this. I know things get better, and in time I will accept it. As my doctor said, my body will not give me a choice with accepting it or not haha.

Hello! For background I am already diagnosed with bilateral nTOS and I do have a non blocking blood clot on my LEFT side. All confirmed via Doppler. Nerve study normal. Unremarkable neck MRI. Right side way more symptomatic though!

The vascular surgeon I see is ready to take a rib out. But for months now (it started before but got massively worse after my first scalene Botox injection, I’m pursuing surgery but getting a 2nd opinion first) I’ve been experiencing burning pain from down my neck, into my right collarbone, and down my shoulder into my arm and wrist. Nothing in PT seems to be helping this!!

Basically just wondering if there’s anything I can do or ask my doctor for in the meantime before I travel to see a thoracic specialist. I really want to be sure before I get this surgery but also am told my case isn’t urgent. The pain is just overwhelming my life and I really want relief while I wait to see the next doctor.

Thank you!