Patient Comments: Thoracic Outlet Syndrome - Symptoms

Question:

What were the symptoms of your thoracic outlet syndrome? Submit Your Comment

Comment from: Ivone G., 25-34 Female (Patient) Published: May 08

I think I have thoracic outlet syndrome symptoms. I started to have pain in my right arm, then neck and clavicle. I went to Urgent Care because there was numbness and tingling in my finger. They sent me for MRI and EMG, and painkillers and muscle relaxers. I feel hopeless because the pain is constant and I feel very weak. Unfortunately, they sent me to a hand orthopedist but he now sent me to a neck doctor. I think the symptoms are very close to this condition and sometimes the pain in the clavicle is very sharp and I feel like it is a heart attack to the point of having panic attacks and shortness of breath. I just want to not have more pain. Also, I discovered that my sleeping posture and my regular posture are not helping.

Comment from: AF Mom, 35-44 Female (Patient) Published: November 09

My neurogenic thoracic outlet syndrome symptoms (NTOS) began January 2015. I have been a weight lifter for over 20 years. The morning after a workout in which I felt some pain (just thought I hadn't stretched/wasn't warmed up enough), I literally could not lift my arm. I had severe pain across clavicle and down arm with numbness in thumb/index finger. I also experienced a white-hot pain, almost as if a rod was being shoved down through my trap. Constant headache, jaw/ear pain, and inability to rotate my head were issues. I was a prisoner in my own home because driving or even riding in a vehicle brought pain that left me in tears. Eventually, my arm would swell and my hand would turn blue. After 9 months of misdiagnosis and experimentation with medicines and physical therapy, I finally found a doctor (he was 8th), who diagnosed NTOS (and reassured me that I wasn't crazy).

Comment from: Mg, 45-54 Female (Patient) Published: October 20

The symptoms of my thoracic outlet syndrome are burning, pain radiating in hand and arm to top of the shoulder and side of neck which also would go up side of ear and face, numbness, and swelling. It irritates to do most normal everyday tasks. Mine came from shoulder injury. It took since 2014 to now to get the correct diagnosis.

Comment from: MissAlanis, Female (Patient) Published: October 23

I was diagnosed just yesterday with not only a pulled rotator cuff but also thoracic outlet syndrome. I was having a good time just two weeks ago when all of a sudden, a white hot pain erupted from my ear down to the tips of my fingers and though the pain has subsided, it's still pretty bad. IO am going to embark on twice weekly physiotherapy (PT) starting tomorrow. Very excited! Hopefully this will help. I suggest looking into local PT places for those who have just been diagnosed.

Comment from: rain, 55-64 Female (Patient) Published: September 24

I was diagnosed with thoracic outlet syndrome last week. I woke up with my hand so numb and my shoulder hurting. I can hardly use the arm and hand.

Comment from: Dee, 55-64 Female (Patient) Published: November 29

I was in a work related accident many years ago, and at that time the doctors said it was a strain, so I did physical therapy. I finally got a second opinion and was told it was thoracic outlet syndrome. Now that I am getting older and live by myself it's hard. My left shoulder down to my left fingers turns blue and ice cold to the touch. I had physical therapy, shots and medicines, and nothing works. Now my pain doctor wants to put a neurostimulator in my neck. I have one in my back for bulging discs and leg pain. It works but I had epidural put in my neck which didn't help, and steroids are no help. I am not sure if it is a good idea to have them put a stimulator in my neck, it was either that or take a rib out; I thought this would be less invasive.

Comment from: miss dukie, 45-54 Female (Patient) Published: May 12

I also was wondering if I was having heart trouble so went to the emergency room via ambulance today to get it checked out. I knew my chiropractor had told me 2 1/2 years ago he thinks I have thoracic outlet syndrome (TOS) but since it was flaring up again and on my left side it mimicked the symptoms your read about heart attacks, I had to check it out to have peace of mind. And it wasn't a heart problem it was my TOS.

Comment from: ldchapman, 35-44 Female (Patient) Published: August 27

I was diagnosed with thoracic outlet syndrome about 2 months ago. I had constant knots in neck and shoulders and both arm weakness when doing any activity, especially over the shoulders (fixing hair). I have begun to develop another symptom here recently and I am confused if it is related to thoracic outlet syndrome or not. I have been getting aggravating muscle twitches in the back of my right arm and in my right thigh muscle. It is very annoying and has been constantly off and on for about 5 days.

Comment from: not crazy, 45-54 Female (Patient) Published: January 05

A number of years ago I was having issues with pain across my chest. I went to see a number of doctors and their nurse practitioners, a number of whom thought I was a hypochondriac but a spine specialist found out that I had thoracic outlet syndrome (TOS). I even saw a specialist for TOS and he wanted to do surgery but I would not do it and now I am seeing a chiropractor for it and receiving some relief from the pain. I had seen some physical therapists who helped but I now know that I have to do some exercises regularly for it. I also have been checked for an extra rib and I do not have one.

Comment from: sjpodr, 35-44 Female (Patient) Published: November 05

I am 41 now and was diagnosed with thoracic outlet syndrome (TOS) in 2000. The hand surgeon, who was supposed to be the best, was pretty lost with a diagnosis. The night before my last appointment, lying in bed, I put my arm across the pillow next to me and within seconds my arm was asleep. When I told the doctor this, he instantly did physical tests and diagnosed me. He told me that only accident victims get TOS and that apparently mine was natural. Sent me off for physical therapy (PT) and it was useless and horrible. For several years I suffered with my issues, the numbness, the feeling that something is clamped on my wrist keeping me from writing, the tightness and pain in my shoulder muscle, and the migraine feeling I kept getting. In 2009 I had a car accident. They told me I had a herniated disc at the bottom of my neck. I was sent for PT. The exercises actually made me feel better with the TOS and most of the issues subsided for the most part (still have issues with the achiness and clamp on my wrist feeling). Well, now in 2014 I am having issues with my left side and I have no idea what to do. I don't want to go back to the same doctor. I have no idea if there are new procedures or medications.

Comment from: Chrissiee, 45-54 Female (Patient) Published: October 29

The symptoms of thoracic outlet syndrome happened yesterday. Early morning I noticed the first of symptoms of pain, and I thought I pulled a muscle. When I woke up I was very tired, and raising my arm was so painful. Taking a shower was extreme pain, and my arms really felt heavy. When I got out of the shower my left arm and hand was purple. I went to the emergency room, I did not have any labored breathing. They checked me for deep vein thrombosis (DVT), and luckily I was clear. As the time progressed my arm felt pain, and felt heavy. My neck, collar bone region and my shoulders really hurt. It also really hurt under my armpit area and I have swollen gland on my left side. They really did not know what it was other than my Raynaud's and nerve involvement. I went home, and it was hard to sleep, and I woke up with my hand, wrist and arm swollen. I then remembered I broke my collar bone in the past so I went in to get an x-ray. They had a very hard time to find my radial pulse, and because I have issues with my blood clotting they also sent a stat referral to vascular doctor for testing. I requested a sling, and with that they did give me an x-ray. I am waiting for x-ray results, and seeing vascular doctor tomorrow.

Comment from: ELIJAH P., 19-24 Male (Patient) Published: October 14

After doing some front squats on the Smith machine, allowing the bar to sit very high on my deltoids immediately caused numbness in ring and pinky finger. Bottom portion of right arm felt on fire for three weeks. And weakness soon followed. After seeing a sports injury chiropractor diagnosed it as thoracic outlet syndrome and he gave me 5 major stretches the all worked. Two months later all the feeling in the bottom part of my arm had returned but the last two digits of hand still suffer from neuropathy.

Comment from: oshun, 55-64 Female (Patient) Published: August 19

I broke my collarbone 8 months ago. I've noticed ever since the break my arm has never regained the strength I had prior to my accident. My arm and fingers ache so badly at night when I lie down I wake up and have to walk around to get rid of the pain. I cannot do anything that requires me to keep my hand out in front of me for any length of time. I cannot write without serious pain. I cannot type any longer because of the pain. I 'm hoping myofascial Release therapy will free me of this crippling thoracic outlet syndrome. Will keep you posted.

Comment from: Eve, 55-64 Female (Patient) Published: June 10

What are the dangers of an extra rib regeneration again causing thoracic outlet syndrome? The extra rib was removed many years ago and is regenerating, causing symptoms of pain, numbness, decreased blood flow, and swelling. It is changing as the rib continues to grow. This has been confirmed to be the problem.

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.

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.

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.

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.

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.

Comment from: TOS victim, 25-34 Female (Patient) Published: February 22

I was diagnosed 7 years ago with TOS and also secondary Raynaud's. I have really bad 'attacks' every few months which leave my left arm unmovable and in some instances my left leg too, which I have been told 1 has nothing to do with the other, this can last minutes to days. I have very bad pains which I have to have ECG's every time because the experience replicates a heart attack. I am still learning about the pains and symptoms (you would think after 7 years I'd be used to it) I have pains on a daily basis which affects my arm, hand, chest, shoulder, neck, ribs, numbness in hand, arm, mouth and tongue. I rate from my days from 1-10, 10 being really bad, a good day is usually between 3-6, bad day can range from and 8-12. Lately I have been getting electric shock sensations in my arm, leg, neck and chest also a tinny taste in my mouth when these 'attacks' happen. Just wondering if anyone could shed any light on this and tell me I'm not mad lol.

Comment from: Dale, 55-64 Female (Patient) Published: November 16

I suffer from this condition, just learning now exactly what it is. I'm in physical therapy due to neck and shoulder pain and now realizing that it is caused by this condition. The massage therapist relaxes the trigger points, but all my muscles keep tensing up again; not sure what to do about that...the exercises sometimes aggravate the condition; what I'm learning is, if there is pain, to ease up on what I'm doing.

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.

Comment from: finally someone list, 45-54 Female (Patient) Published: February 12

Finally someone listened to how much pain I am in and researched all the scans I have had done. For over 5 weeks most doctors have fobbed me off (it is in her head) or just given me medication most of which don't stop the pain, they just drug me out so much I can't drive so therefore I can't get to work. Thanks to my chiropractor who took the time to listen and research he diagnosed me with thoracic outlet syndrome 2 days ago. It all makes sense now. Hopefully after a few weeks of specific exercises I will be back to normal.

Comment from: Mom of patient, 25-34 Male (Caregiver) Published: January 22

My son had surgery for thoracic outlet syndrome (TOS) after 8 years of pain. I wish I could have those 8 years back because he is now a happy young man. The key is to find a doctor with experience. I found a wonderful doctor who had performed a number of surgeries, including on a major league pitcher. He is a thoracic cardiologist. I urge anyone suffering to get the best help available.

Comment from: tosinca, 45-54 Male (Patient) Published: January 15

I am newly diagnosed with TOS (thoracic outlet syndrome). I have been suffering for 6 months. I cannot tell you how many doctors have advised me to see a shrink. Don't listen to them, keep moving forward and seek out the help you deserve.

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.

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.

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.

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.

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.

Comment from: donna moore, 35-44 Female (Patient) Published: May 03

My symptoms are: 1 hand smaller than the other, muscle wasting on hand near thumb , pins and needles and numbness all the way form now my shoulder blade, shoulder, neck, armpit to my wrist. Bad constant pain in elbow even had a spare rib removed years ago and still I'm in a lot of pain every day which is now starting to get me down big time.