advice / anatomical anomalies / brachial plexus / medical leave of absence / neurogenic thoracic outlet syndrome / thoracic outlet syndrome

living with thoracic outlet syndrome

Surprisingly, lots of people have contacted me about thoracic outlet syndrome. Unsurprisingly, they have been through a barrage of tests and have left many stupefied doctors in their wake.There are many causes of thoracic outlet syndrome. Mine happens to be postural and probably induced by my year off (last year) of repetitive activity. You can also develop thoracic outlet syndrome from anatomical defects (extra cervical rib, anyone?),  and trauma. See this for a concise and aesthetically pleasing outline complete with exercises to alleviate symptoms.

Here are some things I’ve noticed about living with thoracic outlet syndrome, having been diagnosed going on 4 months now:

1. The position you sleep in matters. This determines whether I’ll have a good or a bad day. Stop sleeping on your side. You’re compressing that brachial plexus, and it will be mad at you all day. Meaning you will suffer. Try sleeping on your stomach with your head turned in one direction (say, left) and that arm (your left arm) slightly elevated. You can do this by supporting your arm on a pillow. Your other arm (the right arm) should be palm facing upwards and laying slackly but straight at your side. Do not, under any circumstances, sleep with your arms at or above shoulder level. Sleeping on your back is also good. For some reason, I can never fall asleep on my back. But more power to you if you can; you now have two sleeping positions to choose from.
2. Don’t pick it up. If it’s heavy, don’t pick it up. This is easy for me to get away with as a girl. I can play this one off and not think twice about it. But it is aggravating when you really need to get something done and no one is around to help. I highly recommend that you do not attempt to move into a new place by yourself, or even be present at moving day because you will want to do things. Don’t. You will make it worse for days.
3. Buy a desktop. Laptops are evil. Yeah, I still have a laptop. How can you not in this day and age? But at home, you need a desktop. The middle of the screen should be at eye level. Your keyboard should be at the same level as your arms when your elbows are bent 90 degrees. Invest in a good chair. Hell, pay for an ergonomics consult. I’m about to. When you’re compressing your brachial plexus and you’re planning on still living in the 21st century, this is money well spent. If you haven’t noticed, using a laptop promotes poor posture and hunching. This is a great guide for how you can assess and fix your office space yourself. Human Scale is actually the company I’m planning on consulting for creating my optimum med school office space.
See that bent neck? NOT GOOD.
4. Move your clothes racks lower. That sounds weird. But I don’t know how else to say it. I’m short (5’2”, maybe pushing 5’3” since I’m actually standing up straight now). So hanging my clothes in my closet requires me to lift my arms up. It doesn’t sound like much, and it isn’t when I’m just grabbing one shirt, but when I do my laundry and have to lift my arms to hang a gazillion shirts that I’ve put off washing till I run out of underwear (I know you do that too, don’t lie), it really hurts. So make someone move those clothes racks lower so you’re not constantly lifting your arms above your shoulders.
5. Don’t wear heavy purses on your shoulders. For short periods of time, you can hold the purses by the straps. Under no circumstances should you place the bag on your shoulder. You will regret this.
Fashionistas, I recommend trading in your Longchamp…
Longchamp LePliage: long strap to put bag on your shoulder
For something like this…
Michael Kors Hamilton Large Tote (not like I can afford this):
mini strap, not possible to put over your shoulder
6. Blow dry your hair upside-down. I also recommend getting a light, compact, professional blow dryer. Yeah. I went there. I use the Chi Hand Shot, which was expensive but worth every dollar.
the Chi Hand Shot
You’ll blow a lot of money on it (pun intended), but it’s going to be lighter to hold which means less stress on your thoracic outlet and ultimately that brachial plexus. Since it’s small, it’s also less maneuvering you need to do with your arm, so again, less stress. If it’s professional, that means way more air/second, which means your hair gets dried much faster. Life is too short not to look good, and it’s far too short to be in chronic pain. Just do it. Ask your hair stylist for tips on a good blow dryer (and small one). They can get it at a discount for you, and they probably deal with carpal tunnel syndrome and should know of light and professional blow dryers that won’t completely break the bank. And don’t even try blow drying your hair (or even looking put together for that matter) until you’ve had at least 2 months of no pain!
The worst way to blow dry hair with thoracic outlet syndrome.
Notice: arms are above the shoulders.
The right way to blow dry your hair with thoracic outlet syndrome:
Notice the arms are not above the shoulders.
I couldn’t find a picture of how I actually blow dry my hair. I really get my flex on in the morning: pretend you’re touching your toes, proceed to blow dry from this position. Another reason getting a professional dryer really helps on saving time.
7. Stop wearing heavy necklaces. Yes. I’ve had to retire my favorite necklaces. Maybe you’re not into chunky necklaces, so you’re fine. I haven’t been “well” for very long, so maybe a year from now I can wear them again. But you should be wearing necklaces like this:
Enamel Locket Necklace, J. Crew
And not this:
Marina Necklace, J. Crew
The weight of the heavy necklaces induces symptoms for me.
Again, these are all just tips to help you adjust your life with your new (or supposed) diagnosis. They may or may not work for you depending on why you have thoracic outlet syndrome. And make sure you’re always sitting up straight! Don’t bend that neck.
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39 thoughts on “living with thoracic outlet syndrome

  1. Love this post! I think you are really awesome for documenting your own experience with nTOS and giving suggestions to others who might be experiencing the same thing. :)Also: I owe you a very belated email. School has been killing me the last 2 weeks, but I hope to send it tonight!

  2. No worries! I was actually going to email you and see how you're doing, but I forgot you're in school :) My birthday is in a few days and I remember *never* celebrating it because of midterms. Wonderful day of birth.I'm glad this helps! If I can help just one person with nTOS, I think there will be some worth for my medical leave this year :)

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  4. Thanks for all your advice and input… Wondering what excercises you do, if any? I used to be very active and beyond hiking, still trying to figure out what fun activities I can do. Thanks Nikii

    • Hey Nikii! If you have nTOS like me, the best form of exercise that doesn’t aggravate my symptoms is the elliptical (but skip the moving arm things) or quick walking (3.6 mph on the treadmill). I try to do 30 minutes of either one a day. I’ve managed to keep my weight low this way, and I was never one for a crazy workout in the first place :)

      Things I learned by trial and (painful) error that I can’t do anymore:

      1. Lift weights, even if they’re just 3 lbs (just avoid aggravating that region by not doing anything with your upper body- at least that’s how I’ve learned to deal with it)
      2. Swim
      3. Sit ups
      4. Running- depends on the day, but mostly the excess movement of my arms will make my nTOS very painful

      If you’ve discovered any other exercise that doesn’t aggravate your nTOS, I’d love to know about it!

      • Thanks
        Just hiking and lackadaisical bike riding (very low key) very concious of body position
        I’m definitely an active person and for past two years and have been going crazy with being so chill
        I’m not a runner but we do have an exercise bike in our garage
        Thank you for your input

  5. FYI, your link to the site with Exercise information, now brings you to a spam site.
    Great information.
    My doctor said I could swim, but could only do the backstroke Or use a kicking board.

  6. Hi
    All great information and useful tips. Nobody understands the struggles we face everyday. Not even the Drs. I believe there needs to be more awareness for TOS esp in the workforce. Im only 40 and now on SSD due to bad ergonomics in work. Such is life. :0)
    Take Care
    Hugs
    Candie

  7. I’m going to have to try your sleeping recommendation. I was told to sleep on my back and never have been able. Told definitely not to sleep on my front but that was because hands tend to go above the head. It’s been a month since I had a decent sleep …my TOS is a nightmare! I hope that yours has cleared up to give me some hope. Thank you so much for your recommendations. I don’t go for Bags or necklaces though :-)

  8. Hello, thank you for these tips! I have suspected Thoracic Outlet Syndrome after being in pain for 3 months with what my physiotherapist thought was a trapped nerve in my neck, they now suspect TOS! Been a nightmare! Just wanted to ask you if you were now able to drive comfortably? I’ve not been able to drive and it’s so irritating!xx

    • Hey Lorraine,

      I can drive just fine now (but I won’t be taking on a road trip anytime soon). I tried many different therapies, but the only thing that worked for me was osteopathic manipulation. This is because I have posture-induced neurogenic thoracic outlet syndrome. Luckily, I’ve gotten better now that I know how to treat my symptoms.

      Good luck to you- there is hope!

      • Thank you, I appreciate your reply and it has given me hope! They still haven’t 100% confirmed it is TOS. The Physiotherapist has stopped treatment on me now and I’ve been following your tips and I have felt better recently. The Physiotherapist is sending me for Nerve Conductivity Tests so hopefully they will reveal something!
        Thanks again :-D

  9. After a car bumped my motorbike, resulting in two broken ribs and one broken clavicula, I learned a bit about nTOS. Strange thing is: I could run, I could paddle (kayaking), I could swim, all without problems. But I could not walk long distances.

    Four weeks ago I had surgery because the two parts of the clavicula didn’t join. Still the same nTOS symptoms. I guess I can live with it because I can do nearly everything except walking and carrying a backpack. Big bummer, because I like hiking, and walking is often also very practical… I will start with stretching exercises, maybe it will help, but probably the new bone growth and/or other tissue is pressing the nerve so I don’t expect great results, or fast results.

    Nice website you have here. I recognize some subjects from my one year of medical education, but I continued with medical informatics. At least computers are predictable, or so I thought. Greetings from Holland.

  10. My suspected nTOS has been going on for 10 months now. Like many out there I have been through the long string of drs trying to figure this out. I’m in AL and to even find a dr that is familiar with TOS, I have had to travel pretty far.

    I am curious – did you consider the surgery at all or did the long list of complications deter you? I’ve been in PT for 8 months and just started medical massage a month ago although I’m not sure it is helping. Feeling pretty desperate for relief and going crazy with so much decreased activity. Is the consensus that most people just live with this? I’ve done a lot to alter my activities and will take your advice on my office posture. For me it seems like any arm activity aggravates it and I end up with a dead arm at my side. What I wouldn’t give for this to have happened on my left side since I’m right handed!! Anyway, thank you for this webpage and all of the helpful hints. Have your symptoms died down at all or do you still have regular flare ups?

    • I rarely have symptoms, but I had adjusted my daily activities (only styling my hair once every three days, never driving too long because of the seatbelt, never carrying heavy purses). Physical therapy only made it worse for me. I never pursued surgery because changing my posture helped so much. I was lucky in that I found a DO who specializes in neuromuscular medicine, and his manipulations usually end up moving my first rib back into place.

      I don’t know if I have a cartilaginous band, but I know I don’t have a cervical rib. That would be a different story. Depending on the etiology, you might want to consider a consultation with a DO who specializes in neuromuscular medicine. I ended up seeing 6 different doctors until the 7th finally diagnosed me. And because surgery is a drastic and irreversible treatment, I would try to exhaust all other potential avenues before a surgical intervention. But again, this depends on the etiology of your nTOS.

      Don’t give up!

      • I’m not giving up anymore. I did for a while – thought I’d have to just accept being in constant pain. You give me hope! I hope I can get to a point where I rarely have symptoms!

        Thank you again!

  11. I was recently diagnosed with TOS, although my sport medicine doctor didn’t really say which type I have. It literally took 8 months since last winter to finally know what I have. First, he thought it was tendinitis in my hands and arms with tennis elbow, until the symptoms started showing in neck, back, shoulders, and now even chest. I’ve been seeing a PT who does dry needling. I also try to fix my posture and work station. I’m a graduate student and still have 3 more years or so to finish…I don’t know anyone with this, so it makes me feel alone, but I am glad I found your page here so that I at least have someone I can relate to and possibly consult and exchange thoughts/exercises. But anyways I’d love it if we could exchange messages/e-mails. I’d like to learn more about how you deal with it. I’m only 25, and this is making me quite miserable :-(

    • Hey! Use the “hello?” form to contact me and then we can talk.

      I’m also 25, but I was finally diagnosed at 23. It only took them 6 months to diagnose me but I was pretty severely debilitated by then. It’s been two years since I’ve been changing my lifestyle to fix nTOS, but I’ve seen a huge improvement. Everyone varies, and it matters what causes it as well (I don’t have an extra rib, and mine was posturally induced).

      The person who diagnosed me was a DO who specialized in neuromuscular medicine. I’d recommend seeing a doctor like this if you’re not satisfied with your treatment. But then, I don’t know what kind of TOS you have :) So for nTOS, it worked well for me.

      Good luck!

      • Hi again,

        Since my last post I’ve had my nerve conductivity tests. Before we started the Neurologist informed me that he doubted it was a problem in the Thoracic Outlet as this only occurs in one in one million people..! I did question this stat!

        After the test he said he couldn’t find any problem with my nerves at all and that in his opinion none of my nerves were trapped anywhere in my neck, arm or Thoracic Outlet. I just felt despondent. From what I’ve read about TOS I’m experiencing the symptoms of this so now I’m completely confused.

        Please can any of you let me know how you were (eventually) diagnosed with TOS? I’m seeing my Doctor on Thursday so I would really appreciate it so I can go prepared with a list of things and not be fobbed off! I’m in the UK so treatment/tests over here may be slightly different.

        I’m so fed up of being in pain now and just want to get back to my normal life.

        Thank you in advance!
        Lorraine.

      • Hey Lorraine,

        I’m sorry to hear about that. I never had a nerve conduction test for TOS, only for carpal tunnel syndrome (negative, because I didn’t have it). I was diagnosed based on exclusion of >14 other possible conditions and based on my posture alone (no other tests, no imaging, etc). I do have a unique case of postural induced nerve compression, so I do not know if my case is representative of the “normal” presentation of TOS.

        Just from looking quickly online, there are a few ways to diagnose TOS: http://www.mayoclinic.com/health/thoracic-outlet-syndrome/DS00800/DSECTION=tests-and-diagnosis

        The most frustrating part is to not have a diagnosis. I hope you find out what’s going on soon!

        Allison

  12. Hi again,

    Since my last post I’ve had my nerve conductivity tests. Before we started the Neurologist informed me that he doubted it was a problem in the Thoracic Outlet as this only occurs in one in one million people..! I did question this stat!

    After the test he said he couldn’t find any problem with my nerves at all and that in his opinion none of my nerves were trapped anywhere in my neck, arm or Thoracic Outlet. I just felt despondent. From what I’ve read about TOS I’m experiencing the symptoms of this so now I’m completely confused.

    Please can any of you let me know how you were (eventually) diagnosed with TOS? I’m seeing my Doctor on Thursday so I would really appreciate it so I can go prepared with a list of things and not be fobbed off! I’m in the UK so treatment/tests over here may be slightly different.

    I’m so fed up of being in pain now and just want to get back to my normal life.

    Thank you in advance!
    Lorraine.

  13. So glad i found this site! I too had a negative nerve damage test. I was surprised too and wondered THEN WHAT IS MY PROBLEM?
    Kinda used that to confirm it was TOS and not nerve damage. I was rear ended back in December and took til until July to diagnose and start with pt/ massage. What a lot of wasted time!
    I too was very active, avid gym rat and local bike racer prior to accident and now cannot exercise to the point of breathing hard because of the pain/ choking feeling it causes. ( My scalenes are also agrivated) I feel like I hit a brick wall.
    I am just hoping I can resume my old life soon. Anyone ever able to do that?

    • I’m back to my old life… kind of. There’s still a lot that I can’t do because it will aggravate my nTOS. I had to make a lot of changes to my lifestyle, I still can’t carry bags well- I mostly carry things like my iPad (instead of huge course packs for school) under my arm and close to my chest so that I don’t have to use a bag that will put pressure on my shoulders. I only do my hair once every three days because the blow dryer is still a huge problem for me, and I can’t drive for long periods of time because of the seat belt! But I consider these things small changes that I had to make- after two years, I’ve improved a lot and I’m used to it now. I don’t know if you’ll be able to get back to your former life, but you can probably take back pieces of it as you continue to get better. Good luck!

  14. Hello everyone,

    have any of you gotten better to the point that you could live your old lifestyle? Or did everyoen just have to learn to live with it?

    Thanks for all answers in advance

    • Hey Aksela,
      It’s been three years for me, but I can live semi-normally with some modifications (limited driving, no crazy hair styling, careful with my posture at all times).

  15. OMG! I can’t believe I only just found this article. Thank you for sharing.
    I have been suffering (and dramatic as it sounds, I do mean ‘suffering’) with pain, fatigue and a whole list of associated symptoms all down my neck, left shoulder, arm & hand for nearly 14 years.

    Over the years I have been ‘diagnosed’ with a partially trapped nerve (WTF!?) and told that it should correct itself. It didn’t. A few years later when it really wasn’t any better – I was told I had chronic fatigue syndrome, in one arm. I kid you not.

    No one seemed to understand how much this pain & numbness was affecting my life.
    The pain drags you down, it grinds at you all day long.
    It’s hard to even wash my hair let alone dry it.
    Typing all day at work sets off the numbness.
    Finding a decent sleeping position is unheard of.
    I’ve never been able to learn to drive.
    My grip is lame on my left hand.
    blah blah, you get the drift – it effects everything..

    After collapsing and winding up in A&E last year – a junior doctor mentioned TOS in passing – after being discharged I did some reading and had a eureka moment – TOS sounds like me! I paid to have a doppler ultrasound done privately – it gave me the proof I needed – complete obliteration of pulse upon elevation of the left arm. Boom. My doctor then finally agreed to refer me to a vascular surgeon.

    My new (and rather dashing) consultant specialises in TOS and I am about to under-go my 4th MRI scan (this time with my arms positioned above my head), Duplex scan and full nerve conduction study. He agreed almost instantly that there IS without a shadow of a doubt, some kind of thoracic outlet issue happening – I am just hoping it is something manageable.

    Treatment will depend upon the scan results – I am ready to try anything!
    In the meantime I am having acupuncture for pain management – and it’s awesome.

    It might sound daft but feeling like you’re being listened to is a huge deal. Having felt fobbed off for years I could almost scream with happiness at someone actually agreeing something is going on! I told you I wasn’t making this up!

    Anyway – sorry this is a long post – but I wanted to share my experiences and just how isolating these symptoms can be when no one seems to believe you.
    Persevere people!

    I wish that all these sites and articles had existed all those years ago – to anyone who feels this is their reality – mention TOS to your doctor and ask them to investigate accordingly.
    x

    • Thanks for this blog and comments from everyone, great to find it. Kate, really hope you’ve had some more concrete diagnosis and treatment suggestions since your MRI scan and other tests. You sounded like you might be UK-based? If so, can I ask if your 4th MRI scan with arms elevated was helpful? – Am asking because I have had so many similar experiences/symptoms for the past 2 years and am in the UK and many of the specialists I read about are US-based.

      After countless other tests/scans etc, I am getting the results of my first ever MRI cervical scan next week, but as it was a ‘static’ MRI (arms down by my side) not sure if it will show anything and would like to know if your 4th MRI helped you with a diagnosis?
      Thanks.

  16. Feel free to get in touch with me to share your experience. I’m also 25 – have been experiencing TOS symptoms for 2 years which corresponded with doing an intensive yoga teacher training & working full time at a desk job while getting a further desk-time intensive MBA. I found that ESI shots in my neck helped with the choking symptoms and allowed me to work on strength exercises that corrected my posture without as much (but it will still present) of the choking/tightness/being-strangled-by-the-throat feeling. That combined with sleeping with one of those airplane U-shaped neck pillows around my neck at night helped things so that I am at least partially functional.

    When I was in extreme pain, as in the tension headaches, choking feeling, numb fingers/arms, burning nerve pain in my back and inability to take a full breath – Clonazepam pills killed the nerve activity so that I was at least out of hell (but in full zombie retard mode – so that obviously is not a sustainable long term strategy.) Its what I consider ‘pulling the rip cord’ for when things were so undiagnosed, clueless and bad that I felt despondent and basically just biding my time until answers/ideas came along for what was wrong. I’ve been in shape and was in shape when symptoms started- as in 8 mile runs, bikram yoga, lap swimming, etc. I really think it was extreme time doing yoga that gave it to me combined with a boob job i got under the muscle 2 years prior and then always being on the computer. The perfect storm.

    Anyway, keep in touch. I’m sick of doctors and have spent more money than the half-ass answers I received were worth. I’m working on strengthening my posture, avoiding desk job/computer work, and having conscientious sleeping posture (not on side, no bending head/neck into armpit thing.)

    All the best.

  17. Wow, I am so sorry to hear of others waiting so long for a diagnosis. Also that others suffer pain so much worse than mine – and I thought I had it bad! I’ve clearly had this off and on for a long time and it always seems now to come back when my posture’s been worse than usual. I just worked out that this bout seemed to start after I spent hours doing a jigsaw with my son, sat bending over looking at it.
    I definitely didn’t want to go to my GP from past experience but I think I’ve been dead lucky. I went to a local student osteopathy clinic and it turned out the guy I saw has the condition himself. Therefore he recognised it from my symptoms, did a few tests and confirmed it. I was confident then that he would know what to do but since he worked on my neck I do at the moment feel worse. The worst thing for me is how weak and useless my arm feels. But I can sleep at night, so far, and I can breathe just fine. In the past its always gone away when I’ve worked hard at postural changes but this time is scaring me as it feels more severe. I think I’m going to have make some real lasting changes to how I carry my body around and what I carry. But I love my job and its very sedentary. Not much typing thankfully but it scares me to think I might have trouble doing it one day. One last thing – I thought I’d read before that I should sleep on my side – I had started sleeping more on my front and I thought that might be partly to blame. Okay, thanks for listening.

  18. Thank you so much for this!! My doctor has all but given up on me and only ever wants to diagnose me with tennis elbow, even though it’s my hands, wrist and last 2 fingers that have a lot of the issue. My chiropractor is actually the one that diagnosed me with TOS and he’s the only one that really helps my symptoms. Well, him and my myofascial/deep tissue massage therapist. I am totally guilty of the heavy lifting. When I get lazy and decide I’m going to just carry all the grocery bags so I don’t have to make multiple trips (I used my own bags not paper bags) on my shoulders, I am in horrible awful pain for days and I want to kick myself.

    My other issue is the laptop at my office. Today I asked them to buy a wireless keyboard and mouse for me and they said OK. I will have it soon and am hoping it will help me.

    Thankfully, I tend to sleep on my back so at least I have that going for me! :) I don’t wear heavy necklaces and I’m tall so reaching up isn’t usually an issue for me. I found some great exercises on YouTube for TOS. I found searching for them on YT to be easy and they came in handy for sure.

    Thanks again for posting. It’s always nice to know I’m not alone!

  19. Hi all
    i am sailing in same boat for 1 year almost none of my doctors diagnosed me,i live in usa an immigrant..so went back to country and went thru all test starting from x-ray to all dopplers ,mri and nerve conducting studies.. my x-ray showed that i have cervical ribs on both sides( i was experiencing pain only on right neck-medial side of my forearm n hand n fingers) rather that that all my other tests showed Negative *.i had some sesions of cervical traction there it self which got me some temporary relief .i was kept on some gabapentin n asked me to have good postures while studying n household works too ..i am 5 2”which is making my condition of symptoms lil bit worse(hate being short ) and they said.. this will be with u all ur life ( surgery is option but i m 29yrs so they said is not the age for surgery) i am so depressed sometimes this is the age we have to be active and all others are too except ME.i am a student i need to study alot but my symptoms get worse if i sit n study for 1 hr .. i am trying to keep my postures but while iam studying with my books i do peep into my book with a bad posture (stoped using my laptop /desktop as using them alleviates pain in my right hand n forearm)All my scalenes are so tight all the time…
    i do neck excerises ,arm ,n TOS excerisies browsing from YT..i found this site today ..glad meeting all of u n reading ur experiences making me feel i am not alone..

    I know this is long post .thought of sharing mine !!!

    • Thank,s a million for all the imput, I fell 2 year,s ago, on my chest and my back went into my chest, I thought I was ok , but I wasen,t I went to er several times they said I had thoratic strain and now it turns out to be tos, I am in severe pain, in my back arm chest and rib,s and neck plus I get the choking feeling. plus I have carcinoid syndrum from my cancer and together with all these problems I don,t think I am going to make it. no dr believes me .I am at the end of my rope, I pray to GOD all the time that things will get better but it seems they just get worse. I just want to say thank you all for letting me know the test I need to diagnose this problem.

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