Hi Olecyn,
I had 3 different rehabilitation programmes which tried to strengthen my shoulder girdle and they all made me worse. the physiotherapists saw the weak shoulder girdle and thought we must strengthen these muscles. Attempting to strengthen the shoulder girdle further compromises the Long Thoracic Nerve (this is not the brachial Plexus)
I am saying that the problem is “unstable shoulder girdle” but most importantly the solution is to “stop compromising the nerve which causes this to happen”. Trying to strengthen the muscles makes the whole situation worse.
When my situation was much worse medical examiners would ask me why I was holding my affected shoulder in a strange way, they told me to try and relax the shoulder. I didn’t realise I was holding it in a strange way. I only realised that a) there was significant weird and fluctuating pain coming from that hand and arm, b) my hand was changing colour, my hand would go cold, c) my arm was heavy etc. etc.
Some said I had TOS some said there was nothing much wrong with me and I was exhibiting illness behaviour.
As a consequence of strange circumstances which could easily have not occurred an Occupational physician proved that I had partial palsy of the Long Thoracic Nerve. Other experts previously had written that were no signs of scapular winging. This is the salient point : the compromise varies from day to day from hour to hour, the scapular stability varies accordingly, the compromise to brachial plexus behind the pec minor varies accordingly. So what I had had was a root cause which was undiagnosed, rehab programmes which made it worse, a system which did not acknowledge that TOS existed and a condition which was deteriorating as a consequence.
Research into TOS indicated that serratus anterior weakness (this is the muscle that the Long Thoracic Nerve innervates) was a consequence of TOS. They are soooooo wrong. It is a cause. I don’t say strengthen the shoulder girdle I say stop compromising the little nerve.

My condition has improved with every strategy to stop compromise to the LTN.
I no longer have cyanosis, cold hand, aching in the arm.
I rarely have the heavy arm feeling.

One of the symptoms that I hated the most was the headache. 90% of my headaches started whilst I was sleeping. I would wake up with pain from my upper back up the affected side of my neck, up the back of my head and across the top of my head and to my eyes. They made functioning very difficult. If I leant forward they worsened, if I coughed they became even more painful. I worked out that sleeping on my back was causing many of them, I slept with a top that had a bolster to stop my scapula compressing my LTN against my rib cage. The bolster is only 40% - 50% successful.
I like many other TOS sufferers chest breathe, PTs tried to show me exercises to stop this. It was evident that I chest breathed when I went to bed.
Once again through circumstances that could easily not have happened an x-ray showed that I had hyper-inflated lungs. I was prescribed pulmicort, this improved my condition.
I am now seeing a new PT, he suggested a different breathing medication, the doctor has prescribed it. I have been taking the Symbicort for 2 weeks I have not woken up with one headache in that time. My scapular stability continues to improve. Those TOS sufferers who suffer from similar headaches will understand what this is worth on the “quality of life “ scale. I understand that there might be different types of TOS, however there are common denominators, heavy arm, headaches, strange arm symptoms, difficulty being comfortable sleeping, chest breathing.

This will anger a lot of clinicians, however, if you are having difficulty visualising an open thoracic outlet and holding your shoulder girdle in a manner to accommodate this (which only made my symptoms worse) try visualising a nerve about the size of a shoelace that pierces through the scalene muscle , across the fascial bands, across the 1st and 2nd rib and under the shoulder blade and it spreads out to innervate a muscle (serratus anterior) which when it is not functioning correctly will make you arm feel heavy. The scalene muscle, fascial bands, and ribs are thought to have an affect on TOS according to the medical establishment, maybe the effect is on the LTN and not the brachial plexus. Maybe this is why the establishment are not very successful in curing TOS. If you can avoid sleeping on it, sitting in chairs which place pressure on it, using your arm which causes the scapula to compromise it, chest breathing which places pressure on it, then it will slowly recover. With all the pressures of living a life, this is almost impossible. This is the challenge.
I understand that I am promulgating theories which contradict the established theories. All I am really doing is rearranging the cause and effects,, its all the same pieces of information but in a different order.


Thanks for reading this, hope it may help someone regards Towelhorse