Thoracic outlet syndrome

Posted , 6 users are following.

I am at my depths of despair..i have 2 extra cervical ribs and although i have been diagnosed with thoracic outlet syndrome in October 2017.. 2 vascular surgeons say its not.

I have seen a neurosurgeon and had spect ct and spine specialist and all excellent..

My current symptoms are tight/stiff neck only when flexing to ceiling..

Shoulder pain and tingling along shoulder blade and depending on activity tingling down both arms when at rest.

My shoulders feel weak but I have strength and I have had 2 cortisone injections into my shoulder AC joints for arthritis.

I can only sleep on my back as too uncomfortable on shoulders to the side.

The less I do the better..the more I do its worse. I take 3 to 4 panadeine forte a day.

Can anyone help??

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4 Replies

  • Posted

    I am SO sorry to hear you're going through this. It sounds an awful lot like myself. 2 extra cervical ribs, one smaller than the other. I went to a vascular surgeon after seeing a physiologist and doing an EMG. You sound EXACTLY like me. I had it much worse on my left side but I got surgery to have the rib removed. BEST thing I EVER did. Also, I suggest Lyrica 200mg 3x daily for nerve pain. It has made a HUGE difference. I have Psoriatic Arthritis, among other issues, so I'm chronically in pain and depressed. I recently switched my antidepressant to Cymbalta which is also used for nerve pain.... WOW! What a difference. Pain killers haven't helped for me at all with this problem. Physical therapy can help but like my surgeon said, "it's a structural problem," that will not be resolved through PT, unfortunately. I HIGHLY recommend switching surgeons and insisting upon surgery if it's THAT bad. You know YOU!!! I was VERY admit when it came to the point where I wasn't sleeping, or sleeping only on my back, on the floor. Keep me posted. Ask me anything. Where are you located? I'm in US .. Seattle, WA.

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  • Posted

    Hi, 

    What you’re going through sounds terrible. I was diagnosed with bilateral cervical ribs 2 years back, this was after spending 3 years waking up every morning with numbness in my arms. I went to numerous neuro surgeons and orthopaedic surgeons and finally one doctor diagnosed it and told me how rare it was. She also mentioned that I could consider surgery but that it would be a difficult one and there was a chance the rib would grow back if it was cartilage. Anyway she and my bestie’s dad who is also a doctor suggested I learn to work my life around it. The truth is 9/10 Times I wake up with the pain , the exception being when I’ve had a few drinks (weirdly seems to help) and so many times I wonder why me! But what did help and I hope it helps others too,  is exercising often and keeping the shoulder and surrounding muscles mobile. I workout 5 days a week and I feel it’s helped keep it on check atleast through the day. Yoga and chest expansion exercises helped too.  

    Also last month my 67 year old mother realised she had bilateral cervical ribs too and she lived her whole life not knowing it or being affected by it, this made me think that perhaps certain lifestyle choices may help. I’m not sure since 5 years is still quite early into this, but I just wanted to share an experience of trying to live around it. I really hope you feel better.. please do try the mobilising exercises for the shoulder, they seem to have helped. Let me know if I can help in anyway. 

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  • Posted

    Don’t give up. I’m almost ready to but I know I can’t. I too have TOS and need surgery. My problem is my injury is workers comp and these fools are butchering me! 

    Carpal tunnel surgery 

    Radial tunnel surgery 

    Nerve decompression surgery in my wrist 2x

    ACDF Neck surgery 

    This all over the last four years. In the meantime I’m miserable, in pain, unable to work, get out of bed half the time and this has destroyed me.

    From now on I’m taking control of my life and my health and WC can screw themselves. I just need to find the right Thoracic doctor around OKC. Unfortunately most of these doctors in Oklahoma I have no idea what it is!

    Don’t give up!!!

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    • Posted

      Yes, Tracy. Do what you know YOU need to do.

      I was the exact same way. I was in tears, even sleeping and not realizing it. I would dream that i needed or was in search of more pain Rx. I'd wake up in HORRIBLE pain. The only way I could sleep was when my body got SO tired it just crashed.. I was ALWAYS tired because when I DID sleep it was only a couple 2-4hrs.

      If it takes driving to another state, for a good surgeon, DO THAT! The surgery has changed my life! Yes, sometimes I have some numbness or pain but it is not even close to the pain before. Recovery from surgery is HARD. Keep this in mind when scheduling it. I was actually back to school in 3 or 4 days but then again I had pain meds and it was just school. I couldn't reach above my shoulder for awhile and my arm/shoulder were pretty weak.I kept dropping stuff, forgetting that my arm was not as responsive as before.. PT helps with healing. I'm actually back to the gym trying to build back and shoulder strength.

      That's the good thing about after surgery. Only gets better from that. I can't recommend it anymore for anyone in the pain I was in. I REALLY, legitimately, did NOT think I could live life with that kind of pain. I don't even believe in suicide but my pain was so severe and dramatically getting worse that I have to admit, it did cross my mind. My surgeon came into my life RIGHT in time. I couldn't be more grateful.

      Don't give up. You may have to sacrifice to get it done but remember it's for your livelihood and therefore worth it.

      Most of ALL, you deserve it!

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