hello everyone , 6 years ago i lifted something heavy, had a wry neck and now im introducing myself to persons i can not see through a type of forum i have never used before. during the course of my problem i have suffered many of the symptoms that most people with TOS suffer. i believe that the medical practitioners are not looking at the problem logically. various medical experts have suggested that 1)the heavy arm feeling is due to vascular reasons. 2) TOS causes scapular instability 3) there is a changed breathing pattern in TOS sufferers (they chest breathe when they should be abdominally breathing, the suggestion being that chest breathing causes overuseof the scalene muscles thereby compromising the brachial plexus).4)the head forward posture is a cause of TOS.
I believe that their cause and effects are back to front.
1) The heavy arm feeling is not caused by vascular problems but instead it is due to varying scapular instability.
2) TOS does not cause scapular instability, scapular instability causes TOS
3) Many experts on TOS suggest that sufferers of TOS, chest breathe when they should be abdominally breathing. I believe that chest breathing causes partial compromise to the Long Thoracic nerve as it travels over the second rib. This then causes further scapular instability and greater compensation by the pectoralis minor which causes compromise to brachial plexus.
4) The forward head position is not the cause of TOS, it is a symptom. If the brachial plexus is being compromised behind the pectoralis minor muscle (as is suggested by some doctors such as Dr Richard Saunders) then the body's automatic reaction is to try and minimise the total compromise to the brachial plexus(BP) by moving the head forward and remove what would otherwise be normal pressure on the BP. the theory of cumulative pressure on nerves is called Double Crush. as i said this is the first time i have been a member of such a community. i need to go now i will list some of the measures which i have used to lessen my symptoms next time i log on

hi everyone, please excuse me if i am doing this the wrong way i am not very computer literate and i have just spent 5 mins working out how to continue my story. i am assuming that this will continue on from the last episode that i wrote. in essence what i am trying to do is to ask people to consider their condition in different terms to what the medical profession use. if you go to a doctor and describe your symptoms.they may diagnose you with TOS.they will then stop listening to what you are saying and prescribe a bucket load of drugs, a physiotherapy programme that probably will make you worse and send you to a neurosurgeon who doesnt believe that TOS exists but is quite willing to perform some other invasive procedure to prove that is nerve root irritation that is the source of your problems. or if you are really lucky a neurosurgeon who believes TOS exists but tells you that surgery for TOS is only successful for 30 percent of those who have it. if anyone has heard of a person who has recovered from TOS can you ask them to list what they did to get better. my TOS began with pain in my upper back that made my neck very stiff and in the process my right arm felt so heavy that i was unable to lift things comfortably out in front of my body. not one doctor's report described the circumstances of my weak r arm as i had told them. i believe the way that my arm feels heavy is of great significance in trying to understand what is actually happening to cause TOS.
TOS sufferers often describe their symptoms worsening when they brush their hair or vacuuming the carpet, or carrying the shopping bags or reading the newspaper.
the medical practitioners use provocative tests such as costoclavicular test, the hyperabduction test which require the patient to hold the arms in the air or pull their shoulders back (stand to attention)
the manoevres which cause the TOS sufferer to a) have their hand, arm symptoms and muscle spasms in their sholders become worse are those manoevres which involve stabilizing ones scapula.
if one of the muscles that sabilize the scapula is not working correctly then other muscles tend to compensate for the weak muscle. it is my opnion that it is the compensatory muscles (pectoralis minor and rhomboids) which cause the problems of TOS (pectoralis minor syndrome) and myofacial pain of the erector spinae (T4 syndrome). got to go see you later.

hello again, if anyone is interested i would like to mention the strategies that have improved my situation the most.
For the first 20 months of my problem, my condition deterioted markedly. i went from an injured shoulder and able to go on 10 mile bushwalks around steep terrain to three months later needing to lay down for most of the day. there were the very painful (8/10) muscle spasms in my upper back . no amount of capadex, celebrex, feldene, norflex, voltaren, vallium and other drugs that i have now forgotten would ease the painful muscle spasms. things were pretty bad. sleep was terrible, loss of and altered sensations in my right hand and arm.
A) there was one thing that a pt suggested that i do which changed my life around. the pt gave me a 5 inch diameter ball (chi ball) which could be inflated or deflated to suit my needs and showed me how to position the ball between my shoulder blades as i lay on it and relax my shoulder blades (scapulae) to the floor. the pressure and discomfort that it relieved was tremendous. i was telling people that i could now take my pain levels down to 0/0. the pt said that it was a thoracic mobilization exercise, i have seen the same exercise described by chiropractors as a pectoral stretching exercise. it became a necessary part of my routine to lay on this ball and take the pressure off of this area. when i do this i regain scapular stability. i believe that what i am doing is taking pressure off of the nerve which goes to a muscle called the serratus anterior which is under my shoulder blade.

Something changed physiologically in the months from being able to walk for 10 miles through mountainous terrain to needing to lay down for most of the day. i was lacking any energy. i was being told by physiotherapists that i was chest breathing when i should be abdominally breathing. Internet searches showed that many treatments for TOS involve a retraining of the TOS sufferer in the manner that they breathe, pilates, feldenkrais and yoga are used. researchers postulate that the autonomic nervous system is somehow affected, proponents of a condition called T4 syndrome (with symptoms like TOS) suggest that the nerves from T2 are affected, the nerve that cause bronco constriction comes T2. so somehow the physiotherapist is going assist the sufferer to correct a breathing condition that no one is really sure why it is occurring. what if they are unsuccessfull? As the condition of TOS is disputed and not well received by the medical community. complaints of strange symptoms are viewed with incredulity and are not given the significance that they deserve.

B) six years after my initial shoulder injury an x-ray of my heart to preclude heart defect as a reason for high blood pressure found that "the lung fields are over inflated and there are signs of chronic airways disease"
subsequent visits to pulmonary specialists (who asked that the x-ray be redone as she couldnt believe what she saw) and pulmonary function tests (involving continuous deep breathes which made my r upper back very sore again).my comments regarding the improvement that i had had when i had taken asthma medication previously and how it had improved my shoulder situation and the symptoms down my arm. prompted the specialist to consult with her senior and they prescribed a course of pulmicort.
not long after commencing the pulmicort the changes were evident. it was as though i was sleeping on a different mattress. Gastro Oesophageal Reflux which had been really bad since the deteriotion of my condition (an endoscopy 6 months after my injury showed that i had 3 ulcers in my oesophagus, they said it was due to the anti- inflammatory drugs i had been taking. since the endoscopy i had been taking somac at least 5 times a week). since the pulmicort and subsequent change in breathing in 12 weeks i have taken no more than 8 tablets. exercises which i have previously attempted (3 mile walks)and had left me tired and needing to recooperate by laying on the chi ball. now dont cause the same deteriotion of my condition. my arm is improving apart from a setback when a health professional manipulated the area near my scapula which caused scapula instability. i can't but help wonder if other TOS sufferers who may have the breathing problem might improve if they had similar treatment. i wish you well

I have copied over these posts from the new member forum so that towlehorse can meet the TOS members

Welcome towelhorse!

May I ask you a question? What do/did you do for a living? You write like a doctor or other healthcare professional.

Anne

One advanced PT suggested a Styrofoam cylinder to lay on for the same purpose of releasing and dropping the shoulders and such.

I found I like the large inflatable exercise balls even better - i use a 26" one.

I lay face up on it to do the TOS type pec/shoulder releases
also great for laying over on belly to stretch the hips and spine
also lean on it sideways while sitting on the floor with arm over it to stretch the pecs and roll on it to stimulate the lymph flow in that area too

just sitting on it and rocking uses core and leg muscles and side to side uses obliques/core/legs

hi astern i hope this is the correct method to reply to your question. the job which i was performing for 10 years prior to and including the time of my injury is installer of products such as awnings, indoor window blinds, inbuilt wardrobes. i am one of those people who work often with their arms above their heads and suffer from TOS. there are a few reasons that i may sound like a health professional. 1) after sometime i understood that the health system was not helping me get better and was in many ways making me worse. i decided to try and get an understanding of the different opinions as to why and how TOS occurs. the history of the understanding of TOS, RSI and other work related upper limb disorders is quite interesting. as a consequence i find that i may phrase sentences in a similar manner to that of medical professionals. 2) part of my rehabilitation for my work injury has meant a career change. i can no longer instal awnings etc. i now write standard manufacturing processes(SMPs) for my work place and i have been studying occupational health and safety at college. 3) it became apparent that medical professionals were not reporting the circumstances and conditions of my injury as i had described it. so i now describe it in ways that can not be misinterpretted. here in australia we have a party game called chinese whispers. someone whispers into the ear of the person alongside them a statement which has been written down, that person does the same to the person next to them, and so on. the joke is how much the original story is changed when it gets to the end of the line. see you later

hello towelhorse again.
i am wondering if anyone knows of a physiotherapist by the name of Christine Novak .Christine Novak and Dr Susan Mckinnon are the authors of an article called Thoracic Outlet Syndrome from Current Problems in Surgery november 2002 . if anyone can help me to contact Ms Novak i would surely appreciate it. the article in question describes in detail many of the symptoms that TOS sufferers report. if anyone who is reading this is a TOS sufferer if they wouldnt mind listing why and if they have these symptoms i would find it very interesting
1) the headache
2) the changed sensations in their hands and arms
3) the heavy arm feeling
4) why sleeping is so difficult most times
5) why they feel so tired most of the time
6) why their neck aches
7) why there are knots in the muscles in their upper back
8) if anyone chest breathes has anyone offered reasons for this occurring
9) why sitting with your arms out in front of your body for extended periods causes your condition to deteorate eg sitting at the computer
10) why bending down to the ground to pick things up is awkward.
11) why one day they might feel better or worse than another day
12) does anyone find that if they are sitting on a dining chair that they tend to lean back and move their feet foward rather than sitting upright.

best wishes towelhorse

welcome Towel horse, may I ask what area of the country are you in and also are you receiving WC.... you say you are working , but are they covering your medical??? If so may I suggest seeing one of the great docs out in Denver.... why they all seem to be in one place is beyond me, but they seeem to be among the best Ex; of docs out there: Ahn, Annest, Brantigan and Sanders. I myself am a bit prejudice and admit it, I like Dr. Sanders beside and knowledge, sure others are going to chime in here!
Below is an insert from Dr Sanders views:





Dr. Richard J Sanders, author of the book "Thoracic Outlet Syndrome", describes the cause,




Definition




Thoracic Outlet Syndrome (TOS) is pain, numbness, tingling, and/or weakness in the arm and hand due to pressure against the nerves or blood vessels that supply the arm. It is due to tight muscles, ligaments, bands, or bony abnormalities in the thoracic outlet area of the body, which lies just behind the collar bone. Pressure on the nerves is the problem more than 95% of the time, but occasionally the artery or vein is involved.



Common Symptoms



The most frequent complaints are numbness and tingling in the fingers; pain in the neck, shoulder, and arm; headaches in the back of the head; weakness of the arm and dropping things from the hand; worsening of the symptoms when elevating the arm to do such things as comb or blow dry one's hair or drive a car; and coldness and color changes in the hand. The symptoms are often worse at night or when using the arm for work or other activities. During the year 2005, we have become aware of a large number of patients who, in addition to these symptoms, also have pain in the anterior chest wall, just below the collar bone along with pain over the shoulder blade. Until recently it was thought that these later symptoms were also due to TOS, but now it has been learned that they are due to a condition frequently accompanying TOS, namely pectoralis minor syndrome.



Cause



TOS is most often produced by hyperextension neck injuries. Auto accidents that cause whiplash injuries, and repetitive stress in the workplace, are the two most common causes. Some of the occupations that we see causing TOS include, working on assembly lines, keyboards, or 10-key pads, as well as filing or stocking shelves overhead. In some people, symptoms develop spontaneously, without an obvious cause. An extra rib in the neck occurs in less than 1% of the population. People born with this rib, called a "cervical rib", are 10 times more likely to develop symptoms of TOS than other people. However, even in men and women with cervical ribs, it usually requires some type of neck injury to bring on the symptoms. Pectoralis minor syndrome appears in more than half of the patients who have TOS. It results from the same type of injuries that cause TOS.



Diagnosis



Physical examination is most helpful. Common findings are tenderness over the scalene muscles, located about one inch to the side of the wind pipe. Pressure on this spot causes pain or tingling down the arm. Rotating or tilting the head to one side causes pain in the opposite shoulder or arm. Elevating the arms in the "stick-em-up" position reproduces the symptoms of pain, numbness, and tingling in the arm and hand. There is often reduced sensation to very light touch in the involved hand (this can only be detected in people with involvement on one side).
In addition to these findings on physical examination of patients with TOS , patients with pectoralis minor syndrome have point tenderness just below the collar bone about an inch or two inside the shoulder (biceps tendon). Pressure on this spot often causes pain and tingling down the arm.



Diagnostic tests, such as EMG's or NCV's, may show non-specific abnormalities, but in most people with TOS, these tests are normal. However, during 2005 we have found a new nerve test which has been abnormal in the large majority of TOS and pectoralis minor syndrome patients. This test can be considered a variation of EMG/NCV measurements. It is a determination of the medial antebrachial cutaneous nerve (abbreviated MAC). We are currently in the process of reporting our findings in one of the medical journals and hope to have it published sometime in 2006 or 07. It is one of the few objective tests that can support the diagnosis.
Neck or chest x-rays may show a cervical rib. Loss of the pulse at the wrist when elevating the arm or when turning the neck to the side (Adson's sign), has been thought by some to be an important diagnostic sign. However, we find it unreliable because many normal people also lose their pulse in the same positions, and the majority of people with TOS do not lose their pulse in these positions. Shrinkage of hand muscles (atrophy) occurs in about 1% of people with TOS, and these people will have nerve tests that show a typical pattern of ulnar nerve damage.
Other diagnostic tests that are helpful are a scalene muscle block for TOS and a pectoralis minor muscle block for the pectoralis minor syndrome. These are simple office tests that involve a 15 second injection of novicaine or xylocaine into the anterior scalene or pectoralis minor muscle. The tests give strong support to the correct diagnosis if within a minute of two of the injection there is good relief of symptoms and improvement in physical exam findings.



Disease Process



Microscopic examination of scalene muscles from the necks of people with TOS demonstrates scar tissue throughout the muscle. Presumably, this was caused by a neck injury stretching these muscle fibers. The tight muscles then press against the nerves to the arm (brachial plexus) producing the hand and arm symptoms. Neck pain and headaches in the back of the head may be caused by the tightness in these muscles but also can be the result of stretching muscles and ligaments along the cervical spine of the neck in cases of whiplash injury.



Treatment



Treatment begins with physical therapy and neck stretching exercises. Abdominal breathing, posture correction, and nerve glides, carried out on a daily basis, are a part of the therapy program. Gentle, slow movements and exercises are stressed. Methods like Feldenkrais have helped many people with TOS. Modalities to avoid are those that emphasize strengthening exercises, heavy weights, and painful stretching. It is important to be examined and tested for other causes of these symptoms because other conditions can coexist with TOS, and these should be identified and treated separately. Some of these associated conditions include carpal tunnel syndrome, ulnar nerve entrapment at the elbow, shoulder tendinitis and impingement syndrome, fibromyalgia of the shoulder and neck muscles, and cervical disc disease. Surgery can be performed for TOS, but it should be regarded as a last resort. Non-surgical forms of treatment should always be tried first.



Surgical Treatment
Surgery for TOSis designed to take pressure off the nerves to the arm. This can be achieved by removing the muscles that surround the nerves (scalene muscles), by removing the first rib, or by doing both (removing muscles and first rib. Over the past 30 years we have employed each of these 3 operations in a quest for the safest and most effective procedure. All 3 procedures( transaxillary first rib resection, scalenectomy, and combined rib resection and scalenectomy) have limitations; there is no perfect operation. When we analyzed our results for the 1990's, it was observed that the failure rate for scalenectomy with rib resection or without rib resection was the same. This has led us to use scalenectomy without rib resection as our operation of choice. However, when during the operation we observe the nerves to the arm being pressed by the first rib, we will remove the rib during that operation. In the year 2004, during which time over 100 operations were performed, the first rib was removed in 7 patients.
Recurrent symptoms of pain, numbness and tingling is most often the result of scar tissue formation during the healing period. This occurs regardless of which operation is performed. During the past 4 years, 2002 through 2005, we have covered the nerves to the arm with a material like Saran Wrap or more recently, by a material like cellophane, that is designed to reduce scar tissue adhering to the nerves after surgery. The material is totally absorbed within months so there is no foreign body remaining. The material has now been employed in over 350 patients and, to date, the failure rate has been reduced, although not eliminated.
In 2005 we became acquainted with a condition that was described 60 years ago but which most of us had ignored, the pectoralis minor syndrome (described above under "cause" and "diagnosis"). Each patient we now see for TOS is also examined for this. We have been surprised to find that at least half the people who have TOS also have complaints and positive physical exam findings of pectoralis minor syndrome. If following a pectoralis minor block these is significant improvement within a few minutes, we have been performing a very simple operation called pectoralis minor tenotomy. This operation is performed through a 3 inch incision in the arm pit. The pectoralis minor muscle is easily found and cut at its attachment to the shoulder blade (at the coracoid process). One inch of the muscle is then removed to prevent it's reattachment to the top of the nerves going to the arm. The incision is closed with buried stitches. The operation usually takes less than 30 minutes and can be performed as an outpatient. The procedure carries almost no risk of injury.
In 2005, we performed over 50 pectoralis minor tenotomies as the only operation. 35 of these were performed in patients who previously had been operated upon by scalenectomy or first rib resection. They had experienced partial improvement in their symptoms from their operation but continued to complain of pain in the chest and pain over the shoulder blade. Separately, 16 pectoralis tenotomies were performed on patients who had not been operated upon previously. They had been seen because it was thought they had TOS. On exam, most of them did indeed have TOS, but also had findings of pectoralis minor syndrome. When their symptoms and findings on physical exam were dramatically improved by a pectoralis minor block, they were offered the simple operation of pectoralis minor tenotomy with the understanding that if they did not experience good relief of their symptoms they could return for the bigger operation of scalenectomy or first rib resection. To date, 2 patients have returned and received scalenectomies. The other 14 have had so much improvement that consideration of additional surgery has not been necessary.



Results of Treatment



Most people with TOS will improve with stretching and physical therapy. In our experience with over 5000 people with TOS, less than 30% had surgery. The improvement rate with surgery varies with the cause of the TOS. Auto injuries have a success rate of about 80% while repetitive stress at work has a success rate of 65-70%. Pectoralis minor tenotomy has only been performed for the past year. The success rate to date is between 80 and 90%.





For more Information



More information regarding TOS is available in the book: THORACIC OUTLET SYNDROME: A COMMON SEQUELA OF NECK INJURIES. Written by Richard J. Sanders, M.D. and Craig E. Haug, M.D., the book was first published by J.B. Lippincott Co., Philadelphia, in 1991. Lippincott elected not to reprint the book when it sold out its first printing. However, the publisher has given permission to the author to reprint the book and it is now available by phoning his office, toll free, 1 888 756 6222. If you would like to discuss your TOS problem, feel free to call the author, Dr. Richard Sanders, M.D., in Denver at 303 388-6461, or call toll free, 1-888-756-6222.
Dr. Sanders is Board certified in both General Surgery and Vascular Surgery. In addition to his book on TOS, he has authored several articles in medical journals and many chapters in surgical textbooks on the subject of TOS. He has been treating patients with TOS for over 30 years. During this time he has seen over 5000 patients with TOS and performed over 2000 operations for this condition.
Last updated: February 2006

Hi DDAYMBB,
thankyou for that information. dr sanders mentions that he is now performing the pectoralis minor tenotomy on many of the patients who didnt achieve the desired outcome from their previous scalenectomies. it would be interesting to know how the pectoralis minor is causing compromise to the brachial plexus when prior to a neck injury it wasn't. i live in australia so the doctor options are not relevant. i wished to contact Christine Novak re an article that she co-wrote.
i have a theory about the whole TOS situation. i wish i had the computer skills to design jig saw puzzle shaped boxes where one could list differing aspects of TOS.
Dr Sanders mentions
1) THORACIC OUTLET SYNDROME: A COMMON SEQUELA OF NECK INJURIES
2) worsening of the symptoms when elevating the arm
3) Pectoralis minor syndrome appears in more than half of the patients who have TOS
4) Some of the occupations that we see causing TOS include, working on assembly lines, keyboards, or 10-key pads, as well as filing or stocking shelves overhead
5) pain in the neck, shoulder, and arm; headaches in the back of the head; weakness of the arm and dropping things from the hand
6) The symptoms are often worse at night or when using the arm for work or other activities
7) Abdominal breathing,carried out on a daily basis, are a part of the therapy program

i would then like to add two more boxes
8) typically in patients with TOS, there will be weakness in the middle and lower trapezius muscle and SERRATUS ANTERIOR MUSCLES. from an article called Thoracic Outlet Syndrome from Current Problems in Surgery november 2002 by Novak and McKinnon
9) Perhaps the most important anatomic feature associated with injury is the course of the long thoracic nerve through the fibers of the middle scalene muscle in the supraclavicular region.Several patients in the current study were thought to have sustained an insult to the nerve through direct compression by the middle scalene muscle during contraction while exercising.
dr rahul nath texas nerve and paralysis institute.

i would then rearrange the boxes in this order

1) wry neck (for what ever reason)
2) scalene muscle spasm
3) partial long thoracic nerve compromise
4) serratus anterior weakness
5) scapular instability
6) other scapular stability muscles try and compensate
7) resultant postural changes due to shoulder girdle instability
8) pec minor over compensates for serratus anterior when reaching forward and up. causing pec minor syndrome.
9) rhomboids over compensate and cause thoracic spine tightness
10) to compensate for pressure on brachial plexus (BP) ones head moves forward releasing what would otherwise be acceptable pressure on the BP.
11) occupations which may not have caused the problem (wry neck) now certainly exacerbate the problem because the long thoracic nerve can now be compromised in other ways when the scapula is unstable (the bow stringing affect)
12) shoulder girdle strenghtening programs exacerbate the problem for the same reasons
13) for some (disputed) reason chest breathing occurs further compromising the long thoracic nerve.

this is my theory on the process . i have TOS and after 3yrs i was diagnosed with partial long thoracic nerve palsy causing serratus anterior weakness. obviously the experts have noticed the similar serratus anterior weakness in other TOS sufferers. I cant help but wonder if they are thinking that the significance of the scalene muscle compromise (wry neck) is misplaced. it is not affecting the BP but instead the nerve to a scapula stabilizing muscle which if it is not working properly then causes another compensatory muscle (pec minor) to to the compromising of the BP. i am having trouble convincing people of my theory. thankyou for reading this towelhorse