Thoracic Outlet Syndrome

Posted in Arieanna & Ianiv, Science

My doctors (with the aid of my latest specialist, a vascular surgeon) have finally given me a diagnosis for the chronic pain I have had since November, 2004. It’s called thoracic outlet syndrome.

There is very little information about this syndrome on the web. This same lack of information makes it difficult for doctors to know of, diagnose, and treat the problem. However, I pulled up some reference to it online that will help to explain my diagnosis.

What is the Thoracic Outlet?

The space between the rib cage and the collar bone through which blood vessels and nerves (3) go from the neck & thorax to the arm via passage between the scalene muscles (6, 7).

What is Thoracic Outlet Syndrome (TOS)?

TOS is pain, numbness, tingling and weakness in the affected area (my left arm) caused by pressure on the nerves & or blood vessels (mostly the nerve for me).  In most cases the symptoms are intermittent (mine are constant). The diagnosis for TOS is not easy to make as negative test results (MRI, EMG) do not rule out the syndrome.

What Causes Thoracic Outlet Syndrome?

TOS is caused by a compression of the nerves and blood vessels. This can be due to an extra rib, old fracture, scarred tissue, or even large breasts (causing the shoulders to droop). All causes are not known.

Some people are born with extra scalene muscle fibers in both thoratic outlets, narrowing the passage (for example, I have no pulse when my arms are above my head), but this may or may not lead to TOS. In my case, it did. My diagnosis is partly a mystery, but these larger muscle fibers, and some scarring from an old whiplash injury, were partial contributors.

In my case, the pain is constant and has no main trigger to make it worse. There is no obvious compression on the nerve, but it is clear that TOS is the cause (finally). Additionally, there is some concern re: the nerve passing through my elbow, as that may also be too narrow.

Treatment

Treatment varies per patient, but usually starts conservatively. My treatment will include:

  • physiotherapy (Feldenkrais – a specialized type of physiotherapy)
  • massage therapy
  • rehabilitation therapy (to address the whiplash)
  • posture correction
  • exercises
  • ergonomics and frequent posture changes
  • acupuncture
  • Botox (to relax the scalene muscle)
  • combination of medications

    • neurontin/gabapentin – for nerve pain
    • tylenol – for pain
    • advil – to reduce muscle tension
    • cyclobenzaprine – muscle relaxant while sleeping

Additionally, I will be getting another MRI and another EMG (not looking forward to that) and joining with a new neurologist for consultation. It is hoped that this combination of aggressive therapies will relax the muscles, which act in a vicious cycle to compress the nerve, which makes me tense, etc.

Surgery for Thoracic Outlet Syndrome is the last resort. Surgery would involve removing the scarred tissue and perhaps widening the thoratic outlet. Aggressive therapy would still follow the surgery to correct posture and relapse into TOS.

So, that is where it stands. I am happy to finally have a diagnosis (rather than just ‘chronic pain syndrome’), albeit one that is not easy to fix. I am looking forward to beginning therapy, but am not looking forward to paying for it (I don’t have extended medical at the moment).  

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268 Responses to “Thoracic Outlet Syndrome”

  1. godoggo says:

    btw, that’s v. 1 (not v. 2) of the Travell & Simons

  2. Michelle says:

    TOS is a pain in the neck…..

    anyways, I have been living with TOS for 17+ years. Recently had 3 seperate surgeries to remove cervical ribs and decompress nerves. Not much has changed, but if you have any questions about the surgery, or just want to talk about TOS itself, tapeplayingrobot @ yahoo.com

  3. CindyC says:

    Hello to all TOS sufferers. I was diagn. 6 years ago by a NP who recognized my symptoms. I had been suffering prior to that probably another year. I was previously diag. with Tendonitis from my arm pit to my wrist… which doesn’t exist. And also with carpel tunnel syndrome. Come to find out it was neither. I do not have the extra rib like most. Mine is Neurogenic. I’ve had PT, Prolotherapy shots, PT, two botox shots (insurance says its cosmetic surgery so they won’t pay for it). My pain management dr. cannot determine where it originated from. 20 years ago I had multiple injuries to the shoulder over 6 years and we think it never healed properly. It showed up 15 years later probably triggered by stress. Now I cannot get rid of it. There is no TOS dr near me. Probably 5 hours away one way is not considered close. I take muscle relaxers and pain killers when the symptons get really painful. I have been working with a PT and she is real good. It gets expensive going to her so I have to limit when I go. I was deciding to have some type of surgery up until I read this blog. Now I am not sure. I am going back to PT as soon as I can get an appt. The one thing I am glad of is that I am not alone. I thought I was crazy because no one could understand what I go thru. I have saved the ATOSA.org website and will visit it regularly.

  4. cecil says:

    Have any of you had blueing in the temple area of the face. I am a bilateral tos patient and had the blue/gray occur well before the diagnosis and then the left rib resectioning. I continue to have the blue/grapy appearnce around my temple and cheek bone and it sorta comes and goes in color. the doc I just talked to wants to do the venogram and the possible angioplasty and stent .. have any of you gone thru this and what is it like? did it help. I am not on meds and have been doing rolfing, meditation, yoga and stretching to keep in check but ….thanks for comments

  5. Jessica says:

    Can you tell me what some of your symptoms are, I have been suffering for 2 months, and going to get MRI, but think I have TOS. Starting to feel really hopeless, so any input would be much appreciated.

  6. Donna says:

    Does anyone know of any doctors in Southwestern Ontario who treat TOS?

  7. Nancy Roman says:

    I suffered with this pain in my arm, neck, upper back and chest for years. In 1992 I was diagnosed with MS and just by chance I mentioned this to my neurologist and out of the blue he said “you have a thoracic outlet syndrome”. Well that is exactly what it was! I saw the doc at the Philadelphia Hand Center and he set everything in motion to free me of this misery. I had my surgery at Chestnut Hill Hospital in Philadelphia with a 99 and 44/100% success. Thank God and Drs. Hunter and Whitenak for guiding their hands in that operating room! I forgot to mention that I think I got the TOS from whiplash (a rollercoaster) How stupid and embarassing! Don’t you think???

  8. karen says:

    Hi,
    After having a deep vein thrombosis in my arm I was diagnosed with TOS in 2005. I had the surgery and was pain free until about a year ago. I now have tightness from the middle of my shoulder blade to the right side of my neck and some times it gets so bad that I can barely move and my arm falls asleep. Has anyone who has had the surgery had reoccurring muscle pain? I have been to busy traveling for my job to make a appointment but feel like I am going to have to go back in. Any feedback from anyone who has had the surgery?

  9. In CindyC’s post (september 4, 2009) about TOS she writes: It showed up 15 years later probably triggered by stress. At Much Kneaded Massage of NYC I find that all many of my clients physical pain has a huge underlying emotional stress component. The following are some suggestions for your consideration:

    1) Address the stress by finding a good stress management program to learn productive coping strategies and solutions.
    2) Try EFT (Emotional Freedom Technique). I’ve successfully used EFT on myself and clients to reduce pain levels. NOTE: It’s easy and free.
    3) Try the Alexander Technique. The AT teaches you to move more efficiently thereby reducing biomechanical stress on your body.
    4) Read the following book Change Your Questions, Change Your Life: 7 Powerful Tools for Life and Work by Marilee Adams. It’s quite a positive eye opener!

    Hope this helps – Warmest Regards
    Denise W

  10. Elizabeth says:

    Hello. Thank you for blogging about this little know condition! I’ve had TOS for 17 years and wanted to share a few tips. Be careful with “aggressive therapy.” The thoracic outlet is small and aggressive therapy causes the muscles to work and thus enlarge, putting pressure on the nerves and blood vessles around them. My therapists (I’ve tried many) pushed too hard and did much more harm than good. Start small and when it hurts STOP! “No pain no gain” is a big, fat lie with TOS and don’t let anyone tell you differnt.

    Another possible contributing factor for TOS is that your first rib, the one that’s suppose to be there, not an extra one, is too close to your collar bone or may be shaped incorrectly. Most doctors only know to look for the extra rib.

    Hang in there and good luck!

  11. sassy says:

    Well I really feel bad for all you you guys who are really suffering from this problem, but what about the ones who fake the problem to collect the disability from there company. This problem is so serious and it really hurts I know it does and I feel for you, but this one lady by the name of Sarah Beck who faked her injury in Pomona california are prime examples of the reason why people have a hard time to get the real help because of frauds like her. She worked for a company AT&T at the time and milked them for thousands of dollars on this fake enjury. She was working with fake papers she is an illegal immigrant and she milked our system good. Social security, taxes, disability, dmv everything with a fake birth cert. So the only reason why I am mentioning this because the citizens of the united stated gets no benefits for there pain but this immigrant comes along and gets thousands and full coverage insurance for the surgery. Please all of your take care of yourselves and I hope you get the help you need.

  12. Marci Pierce says:

    I was born without having a Thoracic Outlet (the space between the 1st rib and the collarbone) on either side of my body. The Head of Vascular Surgery at UCLA called all available doctors to the “observation deck” during my first two operations (removing the 1st rib and scalene muscle on the right side), because he had never seen, or heard about, someone born without any Thoracic Outlets. Four months later, he repeated the surgeries on the left side of my body. The surgeries were successful in restoring bloodflow to my brain, but the pain did not go away with the surgeries. I did everything from mass Botox injections in my neck and shoulders (I had to be declared “deformed,” by the governement to receive the large quantities of botox) to being put in a Ketamine (sp?) coma for several hours, four days in a row to every medicine know to decrease muscle spasms and nerve pain (including some anti-depressants, anti-seizure drugs and anti-anxiety medications) and nothing helped to make the pain tolerable. It wasn’t until an amazing anesthesiologist (a pain management specialist), in San Diego, kept me in the hospital for 9 days, until the pain was under control [below a 4 on a 1-10 scale (when I broke my knee cap in 3 pieces my pain was a 7]. I’ve been on the same dosage of MS Contin and Dilaudid for three years now. It feels like heaven compared to all the pain I was in from my 20s until I was 37 (3 years ago). When the headache gets really bad, I throw-up uncontrollable and can’t keep pain meds down. I used to go to the ER at least once a month for this problem before I was prescribed fentanyl Actiq lozenges that allow pain medicine to be ingested through the mucosal lining in my mouth, thus bypassing the stomach. I haven’t had to go to the ER for this problem for 3 years because of Actiq. The downside is that it is an off label use for Actiq, so my normally great insurance won’t cover the $210 monthly cost of 7 of these lozenges on a stick, and they are terrible for your teeth because they are a combination of medicine and sugar, to make it tolerable. These three medications have allowed me to live a “normal” life without constant excruciating pain. They even improved my eye sight to the point that I am no longer required to wear glasses when I drive! Love those positive side effects! I would love to connect with someone else that was born without Thoracic Outlets. I spent 35 years being told that the pain was psychological before I got the correct diagnosis. Only because of my physiology classes in my Dual Ph.D program in Clinical, and Industrial/Organizational, psychology, and because I dated a brain research expert before I got married, was I able to recognize that my cognitive abilities (the way my brain thinks) were changing for the worse. I spent two years telling one doctor after the next that I thought I wasn’t getting enough blood to my brain and no one listened to me until I found a TOS expert. I had no less than 20 doctors, in various specialities, tell me the pain was psychological or psychosomatic. My parents have had several double shot, alcoholic beverages every night of my life. I had a lot of pain in my shoulders and head as a kid, but instead of taking me to a doctor, they told me, “Everybody suffers from pain in life, but they don’t talk about it. Stop being a wimp!” or some variation of that, my whole childhood. I was 35 years old when one day I said to my husband, “This headache is blinding me; it’s so painful! Sorry to complain, I know everybody suffers from terrible pain and they don’t complain.” He then informed me that everybody doesn’t live in horrible pain and that most people don’t suffer from any pain at all most of the time. I was floored. I had a Dual Ph.D. education and it was the first time I figured out that my parents had lied about something so basic. I’m still working on not being angry at my parents and the doctors that told me I was imagining the pain. If there is anyone out there that was born with my problem, I would love to connect with you and swap stories! If there is anyone that wants to talk about my nightmare with TOS, please feel free to contact me with any questions or comments! My e-mail address is dualphd@aol.com and my name is Marci. God bless everyone, but especially those who suffer from TOS!

  13. Excellent topics, I really like this topics. I found this online that The best chiropractic clinic helps people in Suwanee GA with back pain,neck pain, headaches. Call their office and speak to any one of their friendly staff to make an appointment for a FREE consultation.

  14. Consuela says:

    I recently had my second surgery on my left side for TOS. I had my first surgery two years ago on my right side with 100% success. When the pain started on my right side the doctors thought it was carpal tunnel- which I did go see a specialist and ruled that out. I continued working with the symptoms for almost a yr while getting worse. I finally went to see my family dr and he sent me to see the vascular specialist who identified that I had TOS and gave me options including surgery. I chose surgery and the results were 100% usage of my right arm again. Last year, my left arm started to have the same symptoms as my right arm I went to see the specialist, and after doing the necessary tests I was diagnosed with TOS and given the options as before. I am now in my 5th week of recovery and have full usage of my left arm with no regrets. I am able to raise both my arms over my head, carry my granddaughter without losing all sensations in my arms. I am thankful to my dr in Sudbury On and the specialist at the Sudbury Vascular Center for all of their help.

  15. Michael says:

    For the last two years, I have been having these horrible symptoms of pain, swelling, numbness, tingling, and weakness in both arms and hands. The doctors, including md’s, neurologists, neurosurgeons, cardiovascular specialists, physical therapists,to name a few, have all been baffled. Many believe that it is thoracic outlet syndrome, but we have found no evidence of it. I feel like I should be on that show “Medical Mysteries”. I have tried numerous medications, physical therapy, injections, epiderals, steroid treatments, etc to no avail. Recently, my new Neurosurgeon found a mass in my neck, which he believes might be scar tissue and it, along with some other injuries sustained in a car accident years ago is what he believes to be the cause or part of the cause of this ridiculous venture. I don’t know how you all deal with this. The only relief I have found has been with lortab and ibuprofen, but it’s temporary and just masking.

  16. Jose Batista says:

    I have had 2 surgeries and 2 veinograms (very painful)to remove 2 blood clots on my neck.
    I have had 2 ribs removed,my right arm had swollen to 4 times it size due to blood being restricted,(thrombosis)I have varicose veins on my arm and although I believe that the surgeries saved my life-I still suffer from pain everyday,some days are just awful-my arm is no longer swollen but the pain is constant,I can not lift objects because the pain intensifies immensly,I lost my job of 30+ years due to this affliction-my quality of life has been greatly affected and I suffer from depression at times because I was always a very active personI am currently on pain management medication LYRICA which helps but it is not the answer-their is no answer from the research Ive done it seems to me that this pain is for life-therapy helps a little but soon after treatment the pain returns.I feel for all of you who suffer from this affliction-GOD BLESS!

  17. The thoracic outlet is small and aggressive therapy causes the muscles to work and thus enlarge, putting pressure on the nerves and blood vessles around them.Surgery for Thoracic Outlet Syndrome is the last resort. Surgery would involve removing the scarred tissue and perhaps widening the thoratic outlet.

  18. lilly says:

    Hi all, I have not actually been diagnosed yet but here is my story. I am 44 yrs of age and for about 8 months have had horrible pain in my neck R arm, shoulders, chest and also having tingling,numbness and pain L arm and hand. I have done MRI on neck, X-RAY’s,Physical Therapy, ,trigger point injections and epidurals on my neck. I origionaly started with my Rheumatologist because i have Psoriatic arthritis which presents much like rheumatoid arthritis, thinking maybe it was that.I had my first appt with a neurologist and am having an EMG on monday. I also happen to be a Medical Assistant and one of the RN’s i work for has a friend that is a neurologist, so she asked me to make a note regarding my symptoms and i gave her my films. Just from this information he thought it might be Scalenus Anticus Syndrome. I pulled out my Tabors medical book i recieved in med assistant school and did the research on my own and i think i have got this all figured out. Dear god i hope i can find help. I can’t take this pain and also being on all these pain and muscle relaxants along with my arthritis meds .I don’t know how much longer i can take it. I want to do stuff and i can’t because i feel so weak.



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