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

Towelhorse
you are such a prolific writer...your piece gave me a lot of insight...I agree with you that NHS Doctors aren't diagnosing correctly (sorry bit of a sweeping statement). I too had to do my own research and become my own Specialist.

I was diagnosed with RSI 13 years ago - a compressed nerve in my spine, found by EMG tests done which found denervation and reinnervation in C7 root and mildly in C8.

I was then diagnosed with Arthritis and Fibromyalgia and basically told to learn to live with pain.

I undertook 2 years of Oesteopathy at the excellent European School of Oesteopathy in Maidstone - a teaching school so extremely cheap £5-10 visit. Then physio which helped but only 6 sessions allowed under NHS. Recently I have had Chiropractic treatment followed by more Oesteopathy.

I am still left with a right side which feels like I am unsticking sellotape on the inside, feel like my ribs are stuck. Its like I solidify if I don't keep moving and I have to "crack" myself to get my upper trunk in motion.

I can't fully lift my right arm without compensating with my ribs. I have been told by School Oesteo I have serratus anterior (problem?) and now I have internet - find this is linked with the long thoracic nerve which could explain the feeling of nerves rubbing like trying to light two sticks to make a fire! From this research it seems to be saying the major observation of Serratus Anterior probs is winging scapula (which I have). Would long thoracic nerve be same as thoracic outlet syndrome. If it is - the winging scapula would be your main giveaway. I can relate to heavy arms in early stages of RSI.

You mentioned about exercise with chinese ball inbetween shoulder blades - I use a wooden block in yoga and sit with it pressed on the wall....however...last time I did it I suffered with stiffness for next few days and I like the idea of something that can be altered to suit the person. Where can I get this? Everything in the public realm is made one size fits all - including chairs that are so big your feet can't find the ground.

It could be that you have cross-overs of syndromes, conditions, as I think you've said. You have asked a few points why...but don't want to lose this msg going back to them (new at this tech stuff ha!) but remember you said about sitting. We're told to sit straight but it doesn't work when your bodies out of balance and I think we sit instinctivity in a way to balance ourselves.

I think the main thing is follow yourself, your instincts, listen to your body.

I have tried this technique to help - use two hands. Cross arm in front of your body to opposite shoulder move fingers up halfway towards your ear. With other hand place it on same shoulder so that its like a cup handle.
Move fingers together and out again and together and out....gently stretching the skin and I imagine gently pulling nerve underneath.I found it amazing...and a few hours later I was just stretching out my arm in normal activity and I felt my nerve releasing (it actually felt like I'd been stabbed...I say that not to frighten you...but to illustrate the power of this stretch. From research it seems this is the area the thoracic nerve travels and it gets stuck on the sides of (things!?) and scapula. It is a very powerful release...I made it up myself so let me know if its any good.

From my research I have also learned I have Electrosensitivity which could have contributed to my RSI and I get tired if I am near too much electrical equipment. I am limited on computer, can't tolerate fluorescent lights, Mobiles completely wreck my head. It seems like damage to peripheral nerves could be linked with electrosensitity...that is my belief. It may explain your exhaustion - perhaps keep a diary of incidences of tiredness and note if you used the computer too much or lights or mobiles.

I hope that may have helped. I will come back to forum but need to limit my dose of electricity.
Be extremely interested to know if others with peripheral nerve injury, RSI have a sensitivity to electrical equipment.

Travel with Love
The Slug

Oops just remembered with that technique you gotta also gently stretch your head and shoulder in opposite direction as though you are pulling apart whilst gently guiding this pulling apart with your fingers....you should feel a gentle tingle as in gentle massage as you do this try moving fingers to collarbone and over the shoulder always keeping in same direction i.e. towards ear and towards should - it should be pleasant and very gentle.

The Slug

hello Mighty slug,

I use one of those inflatable exercise balls to lay over 26 inch size - I also have a Styrofoam cylinder 6" diameter and 30" length approx. {a rolled up towel or 2 will work also}

nearly anything that is comfortable to lean on and over will work.

small firm balls will work for triggerpoint therapy. more info in our sticky -useful sites - above the posting list.

lay with that the length of your spine and let the shoulders drop down and also the chest will release and stretch.

do small movements with arms out at various angles for gentle stretches there too.

If pain is high start flat on floor with the small arm positions and movements.

diaphragmatic breathing is very good to use at this time also.

thanks for your info mighty slug. the chi ball that you asked about is only 5inches in diameter it is made of the same plastic that those exercise balls are made of. it is able to be inflated, deflated by removing a small stopper which looks like a golf tee and blowing it up to your suit your requirements. here it costs about 15 australian dollars. i worked out that just over half inflated was the best size, then at the local $2 shop they were selling childrens small soccer and basketballs (from china) just the same size complete with a small pump. so i bought a couple of those, pumped them up to just over half full and now i use those. my point about the relief that i get from laying on the chi ball is. I think that the chiros and PTs have misinterpreted the reason that some people get an improvement in symptoms. i dont think it is because the pec minor is stretched or the thoracic spine is mobilized. I think that there are a significant number of other people like myself who have scapula instability and when they lay on the ball they allow the nerve to be decompromised which improves scapular stability. when i returned to light duties (making security products) i would make my shoulder worse and very uncomfortable. i would attend a pt (we call them physio) session and lay on the ball 5 or 10 mins and notice the difference. then i would do some exercises, for instance a theratube arm exercise and lose the scapular stability.
using the chi ball decompressed the nerve, having to stabilize the scapula compressed the nerve.

one of the things that i couldn't understand with this condition was whereas if i had hurt my lower back or knee or some other part of my body is if i rested it would eventually get better but with this condition rest usually made it worse. i had told my doctor that i was having a terrible time sleeping so he prescribed some sleeping tablets. they would cause me sleep through the night but my symptoms would be worse. it reminded me of when my first child was born, he was a spilling all the time and vomitting. he would keep my wife and i up all night. we hadnt had a decent nights sleep for 12 weeks. we took him to the paediatrician and he prescribed a sedative for him. i was not happy giving a small baby a sedative but you assume that the experts know what they are doing. we gave him the sedative and he gave us some peace for a while but he was not happy when he woke up. we had a visit from a CAFHS nurse to see how we were going with our new baby. we told her the problem. she said try some antacid medicine (mylanta) he slept like a baby. we had been giving him sedation so the acid could eat away at his oesophagus.

i think it is similar with TOS when you are sleeping you are making your problem worse. you are compromising nerves. this is why sleeping is so difficult. the things which make this condition persist and worsen are
1. laying on your shoulders and ribs
2. using your affected arm (stabilizing the scapula)
3. chest breathing

it is pretty difficult not to do all of these things

thats why just resting doesn't make you better

within the next couple of days i shall take some pictures of the things that have made my condition significantly better.

i am interested if anyone has had a problem where they have
a)bent to the ground to pick something up
b)sneezed
and had the weirdest and scary sensation in their thoracic spine which feels as though their spine has opened up? when i was at my worst it happened at least ten times, once when the pt had her hand exactly where the clunk happened, i read of another TOS sufferer who described it. i will find the link for it tomorrow best wishes