Patient Comments: Thoracic Outlet Syndrome - Symptoms

What were the symptoms of your thoracic outlet syndrome?

Comment from: Victim of rear-endin, 45-54 Female (Patient) Published: April 16

I truly think the worst thing with TOS is that most doctors act like you are out of your mind. I also have all of the listed symptoms, plus leg pain with numbness, and swelling over and under the collarbone area. I do get very depressed from the fact that the neurologist who confirmed my TOS doesn't treat it. My primary care doctor said I need antidepressants and must accept that medicine cannot fix me. I've been suffering for two years after being rear-ended at a stop light. All this – because someone wasn't paying attention while driving.

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Comment from: KarenW, 45-54 Female (Patient) Published: September 17

I was diagnosed with thoracic outlet syndrome 12 years ago and after many years of excruciating pain, I began to notice patterns that increased the pain. Minimizing my salt intake decreased the pain I was having for weeks at a time to just a couple of days in a month's time, most notably when I retain water. Cutting out processed foods like Luncheon meats, cheese, and other high in salt foods made all the difference.

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Comment from: 35-44 Female (Patient) Published: August 28

I have been dealing with thoracic outlet syndrome pain since last year. I have flare ups frequently. I have been to physical therapy twice, have had MRIs (minimal bulging disc at C6C7), and EMGs (negative). I have also had so many pain shots and steroid shots, I feel like a pin cushion. Just in the past month, I have had three flare ups, the last one being just two days ago. With these, I am unable to move my neck, and my right arm. There is an unbearable pain. It goes from my neck, to my shoulder, down my arm and into my shoulder blade. I have begged my doctor to help fix this. I can't live like this. I am going to be a first time grandma soon. I want to be able to hold my grandchild, symptom free. My doctors, both family doctor, and orthopedic doctor, do not know what to do for me, or who to send me to for help. It is so frustrating. I don't think anyone has any idea how bad the pain can get. With every motion my arm or neck makes, the pain starts.

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Comment from: junkmans daughter, 35-44 Female (Patient) Published: February 24

I have Psoriatic Arthritis and have had droopy shoulders my entire life. My mom would tell me to sit up straight a lot and when I took riding lessons in college I was constantly yelled at to correct my posture. At 42 I discovered that psoriatic arthritis is probably the cause of my shoulder droop due to connective tissue issues. I have had physical pain as long as I can remember including things like uveitis, pueritis, sprains, tendonitis etc. All have been manageable with sunglasses, rest splints, altering work days and rest time. I now believe I have thoracic Outlet syndrome and my left arm/hand are involved. I have been told about the severity of the muscle tension in my shoulders by my masseuse, and have found some relief from the severe hand pain with splints, but it is almost unbearable at times. Even joint deformities in my toes and heel that were operated on never felt like this. I am now without health insurance as I had to quit a stressful job to try and manage the arthritis, and this is the worst ever for me. Really hating arthritis today.

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Comment from: iloveequus, 45-54 Female (Patient) Published: June 15

I was "rear-ended" and started to have numbness and tingling in my arm and hand when raising my arm above shoulder level. That evolved into severe pain and numbness which radiates from my neck down to my arm and hand. I also now have Reynaud's syndrome.

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Comment from: TOS_patient, 35-44 Female (Patient) Published: May 18

Symptoms: tingling, spasms, wasting of the hand and forearm muscles, pain above the collar bone and down the arm into the pinky and ring fingers. My EMG/NCV was positive for TOS and I opted for surgery 10 months after the diagnosis (21 months post injury) due to continuing progression of all symptoms. By the time I opted for surgery, I couldn't grasp a pen, cut my food, etc. If I used the hand for anything, I'd experience a sharp shot of pain down the arm and enter a period of increased pain. Surgery showed a large bone growth on the 1st rib. So far, I am still symptom free on that side and the hand/forearm muscles recovered. I am so thankful that my doctors initially suspected TOS and that I was quickly diagnosed with it. Also, I am glad that I trusted my doctors and attempted the surgery. My life has dramatically improved since this surgery. Unfortunately, I am experiencing the symptoms on the other side now and once again I have a positive EMG showing nerve problems involving the ulnar nerve/C8T1 distribution. Neck has been ruled out as non-contributatory.

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Thoracic Outlet Syndrome - Treatment Question: What kinds of treatment or therapy have you received for thoracic outlet syndrome?

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