Hi All, I'm Rob - 27, from London UK. I work in graphic design and I'm a part-time session musician. I've spent the past year in agony searching for a diagnosis / cure for my condition to the point where it's left me feeling utterly hopeless. I've lost control of my life really.. I can't pursue my passions, I'm nearing the point where I have to give up work and arguably more important to me I've sacrificed friendships and important occasions due to my condition. I've seen a neurologist, two orthopaedic specialists, two massage therapists, a chiropractor and after 12 months of Googling my symptoms, most of my results keep bringing me back to Thoracic Outlet Syndrome.

I've been made to feel like a hypochondriac by these doctors who are supposedly at the top of their fields yet they deny the presence of TOS. My main symptoms are; a horrible ache / pressure around / under my right collarbone / pec minor that *seems* to travel up the full length of my sternocleidomastoid or scalenes occasionally up to my ear, occasional but not often tingling down my arm and into my index finger / thumb and a deep ache in what seems to be the rhomboid area of my upper back. I don't seem to have any loss of strength but my right hand is sometimes cold and I feel like I want to rip my throat and collar bone out most days. The ache started a few weeks after I had a right-side subacromial decompression & distal clavicle excision surgery (for subacromial bursitis / impingement that didn't respond to non-operative treatments) but the symptoms were present mildly just before the surgery as well - I'm assuming the improper use of my shoulder leading up to and especially after the surgery caused a lot of muscle imbalances / tightness resulting in these symptoms?

I thought this was all posture related as I'm 6'2", spent years as a typical insecure gym-rat training only the front of my body and have had admittedly terrible computer posture for years / have strained the rhomboid area on upper back a few times using a computer in the past but it's always got better. I've learned that with chronic pain, pain isn't always the first sign of a problem but more the last sign in that it's your bodies way of saying "ok, I've had enough, now I'm broken". After considering this I've spent months doing chin tucks, cobra stretches, rows, scapula stabilisation exercises, rotator cuff exercises and despite my back now feeling very strong and my shoulder strength / ROM near 100% after the surgery, the tightness in my collarbone and neck muscles hasn't improved and is ruining me.

I've been on Diclofenac / Naproxen for months but am now off them, I currently take Diazepam 5mg or Gabapentin to sleep and am horrifically addicted to Codeine & Tramadol - I can't handle a social situation without taking these, even family events. I look forward to the weekends because I try to have breaks from Tramadol in the week so that I avoid building up a tolerance in order to be able to take it at the weekends knowing it'll have a better affect. It barely helps the pain but it puts me in a 'silver lining' mood where I can better face social situations without breaking down. I'm also drinking a lot more now - I never thought much of alcohol before. As you can see my life is a mess right now.

I was given an MRI of my neck & scapula (my GP thought I may have had scapula bursitis) but they were both unremarkable. My chiropractor took some X-Rays (report attached) and thinks I have cervical facet joint disfunction & scalenus anticus syndrome but his treatments weren't really working (4 weeks, twice a week). My Neurologists think I have a trapped nerve root in my cervical spine but requires a better quality cervical MRI to diagnose it but I can barely afford to have another MRI done let alone pay to see him again for a diagnosis. Surely if I had a trapped nerve then weight training in the gym would worsen my symptoms, not relieve them? (pull-ups / hangs, rows, scapula work, chest flys, lots of stretching). I also had an EMG / nerve conduction test at the London Bridge Hospital but the doctor concluded that everything was normal.

The only relief I get is going sleep (my symptoms are virtually gone first thing in the morning), having warm baths, taking Valium, going to the gym to do stretching / light strengthening exercises and laying on my bedroom floor with my arms above my head (i often do this to browse on the iPad in comfort) but as with resting, the symptoms return within hours. I'm still hoping that it's posture related and that having a job at a computer all day is exacerbating my symptoms and that I should stick to my deep tissue massages, stretching, scapula stabilisation & technique-driven strength training but as I'm sure you can appreciate, it's been so long since I've been symptom free that every treatment option blends into one and I find it hard motivating myself toward a particular treatment when I haven't been formally diagnosed.

I guess my main motivation for this post is to ask; do you think this could be TOS, what would anyone recommend be the next phase for me (MRI of brachial plexus?!)

If you've read this far I sincerely appreciate it and I'm sorry for boring you all with my sob-story! Any help would be appreciated.

Many thanks

Welcome Robbie123.

It sounds quite familiar.
I moved your post here to the TOS forum for more responses.

Here is the main TOS page with other threads to read and the sticky threads above it- be sure to explore those stickies..
http://neurotalk.psychcentral.com/forum24.html

Hi Rob,

you seem to have a nerve entrapment which may be due to TOS.
I would guess that a strengthening exercise routine would make your symptoms worse even if you feel better after the exercise.
This is how it is for me. It took me close to a year (of daily pain) to realize that strengthening exercises actually contribute to the problem even though they seem to relieve the symptoms (probably due to improved blood circulation during the exercise).

Since laying down on the floor relieves the pain, this is probably what you should stick with for a few months. Do it several times a day combined with diaphragmatic breathing (to help relax the scalenes) and light stretching.
I found that if I give my nerves enough time to relax each day, the pain gradually goes away. I was able to stop all pain meds in a couple of months.
I am yet to figure out the long-term plan

As for the diagnosis, I think you need to rule out the spine problem.
If this is a soft tissue nerve compression then no MRI or EMG will show anything.

Hi,
I too have that rhomboid ache you describe, My neck MRI was normal, EMG nerve conduction was normal, neurologist told me I was fine. Its very disheartening. I just had an MRI of my shoulder last month and it found supraspinatus tendonosis, bursitis, and labral cysts. Do you find that if you hold your arm out to the side and internally rotate as far as you can its painful or your symptoms worsen? what do your scapulas look like? People with TOS/shoulder impingement almost always have depressed (lower) sitting scaps, a flat or downwardly angled collarbone, and anteriorly rotated scapulas (so you can see the inside angle poking out of your back). If you have those symptoms you should google evan osar physiotherapy and starts performing his wall slide and side lying isometric pattern exercises. Also work on upward rotation shrugs, and face pulls to raise the collarbone/scapular position. But only if you are positive that you have a shoulder impingement type thoracic outlet syndrome. These exercises are meant to raise the humeral head in its socket, raise the collarbone position, and raise the resting position of the scapula. And every night before bed use a massage ball (lacrosse ball or something hard) on your entire chest and subclavius under your collar bone. Once your collarbone position is adequately raised start really going hard on the wall slide exercise I mentioned above. These will aim to increase the space between the humeral head and acromium, wherein the supraspinatus sits, and hopefully gradually get you away from that dull ache of death. That dull ache is the worst pain Ive ever had and Ive broken bones and torn muscles. Anyways, Ive been doing these exercises and working on this stuff for about two months and I have slept better the entire time. Some days Ill wake up in the morning and think im completely cured, others Ill wake up with it as bad as its ever been. I hope you feel better soon. Its a strange disorder.

some simple at home things that might be helpful if posture is a issue-
http://neurotalk.psychcentral.com/album.php?albumid=422