Patient Comments: Thoracic Outlet Syndrome - Symptoms

What were the symptoms of your thoracic outlet syndrome?

Comment from: Misseddx, 45-54 Female (Patient) Published: June 05

I was diagnosed with thoracic outlet syndrome correctly by my physiotherapist (PT). She has 30 years of experience and is highly skilled. My symptoms included having pain, weakness numbness when lifting my arms above my head, to the point of where I could not wash my hair in the shower, I had dizziness, pain, etc. I think it also caused cardiac symptoms (negative for heart attack). After 8 weeks, it did start to return so I think stretches would be advised by the PT.

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Comment from: Iris, 45-54 Female (Patient) Published: May 30

In 2004 I was diagnosed with bad thoracic outlet syndrome. I then had my first operation. The place on the neck where I was opened up, since then has always been extremely tender to the touch. Unfortunately, my symptoms just became worse and in 2012 and I went for a second operation where a lot of scar tissue was also removed. Now in 2014, I am still in so much pain and just want to cry. My neck and shoulder are so painful, causing my left shoulder to be a permanent tense ball; feel like putting a knife right through. I"m really desperate now! I am desperate to try anything now that does not include surgery.

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Comment from: manton457, 45-54 Female (Patient) Published: October 08

My issue started with neck pain and shoulder pain between the shoulder blades, after taking a job as a cashier. After several misdiagnoses, a doctor diagnosed with me with thoracic outlet syndrome. My symptoms are different from day to day, but have ranged from numbness to the left side of my head, neck, face, jaw to lip, down to both shoulders, across the chest and down arms. I have muscle pain in my arms, shoulders, and back. I experience pain in my rib cage, armpits, and pseudo heart attack symptoms. I am now 47. My newest symptoms are that my arms feel very heavy and it is hard to raise them above my head. I have weakness in my arms even though I have been doing physical therapy for 3 months to build strength in the arms, shoulders, and back. The physical therapist was the first to figure out I had thoracic outlet syndrome, but getting a healthcare practitioner to listen was difficult.

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Comment from: DressageVid, 55-64 Female (Patient) Published: April 22

Getting a diagnosis for TOC can be extremely difficult. My suggestion is to find a highly respected sports medicine doctor if you suspect you have TOC and your current doctors aren't helping you. Also, make sure if you're prescribed physical therapy that you get with a highly educated group that doesn't just do ultrasound and exercises. I think the U.S. tends to be far behind Canada and Europe in terms of the effectiveness of PT practices. A good PT is a good diagnostician, and most sports medicine doctors understand the value of PT. I developed TOC after a horse fell across my back after it knocked me to the ground one day. Within a few months, I had lost a great deal of strength in my arms, and I hurt like heck. The test my GP did for TOC was worthless. I saw a few different doctors before getting connected with a sports medicine doctor and the PT group he worked closely with. It was actually one of the PTs who administered a more thorough TOC test and decided that was probably what was wrong. They worked on all the deep soft-tissue problems and trigger points that had developed subsequent to the horse accident, and they improved my biomechanics once my strength and circulation started to return. I was cured in about 60 days, but that was after three years of debilitating pain.

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Comment from: Nicki, 25-34 Female (Patient) Published: June 18

I woke up one morning about one month ago with a red, swollen left arm. The doctor took a while to act and finally referred me to the hospital for an ultrasound scan as they suspected upper limb DVT. The ultrasound confirmed that I had clotting in my left arm from just below the arm pit to the top of my shoulder and I was referred to another hospital to a vascular surgeon. There they decided to do a venogram to establish the extent of the problem and found that that whole area was blocked, the vein closed off. So, clotbusting medicine was given and the next morning the clot was gone and the vein opened up. But 8 hours later it had clotted again and the vein closed up again. So again the same procedure and that same day they also removed my first rib. The surgeon explained that the rib was pushing down on the vein, causing it to block and so thoracic outlet syndrome was diagnosed. It's been three weeks since surgery and I feel OK. I still have pain in my left arm and also now my right, so I am getting the first rib on the right removed as well. I still don't know how it happened and why, but I suspect most of us thoracic outlet syndrome sufferers are in the same boat.

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