Sorry if this becomes a long story but it is the contribution of all of the factors that in my opinion constitute Thoracic Outlet Syndrome.

Prior to my injury

1. I did not have a breathing problem
2. I did not have a sleeping problem
3. I did not have arm problems (heavy arm, cyanosis, cold hand, loss of sensation, pain)
4. I could sit for any reasonable amount of time
5. I did not have muscles in my upper back in spasm continuously
6. I had performed my very strenuous job for 10 years
And then I had a pain in my thoracic spine which caused my neck to stiffen (wry neck) and I could not lift things in my affected arm in front of my body as I could previously.

I had scapular instability.
However I continued to work through the busy season for the next ten weeks up to 11 hours per day. I thought that the 3 week break at Christmas would allow my shoulder to recover. I was still very fit, whilst on holidays during the Christmas break I was going bush walking (10 miles) through steep terrain daily. But my arm was not working properly. I sought expert advice. Within 3 months I was struggling to walk ˝ a mile on flat terrain. Something strange had happened. Physiotherapists said that I had thoracic outlet syndrome and told me that I was chest breathing.
Now
1. I had a breathing problem
2. I had a sleeping problem
3. I had arm problems (heavy arm, cyanosis, cold hand, loss of sensation, pain)
4. I could not sit for any reasonable amount of time
5. I had muscles in my upper back in spasm continuously
6. I could not perform my very strenuous job that I had had 10 years.

After considerable advice and many unfortunate things happening

I found that I could relieve the muscle spasms in my upper back (which had been continuous and I rated them as 8/10) by lying on a chi ball (between my shoulder blades). This stopped the compromising of a nerve which ran under my scapula the long thoracic nerve (LTN). This was not a thoracic mobilisation exercise, this was not a pectoralis minor stretching exercise. I had greater scapula stability after lying on the ball, my arm did not feel as heavy.
By decompressing the nerve, other muscles relaxed in the area. Other muscles did not have to compensate for the weak serratus anterior muscle (the muscle to which the nerve which is compromised is attached).

I believe that scapular instability causes thoracic outlet syndrome not the other way around. The scapular instability causes my arm to feel heavy. Scapular instability causes my pec minor to compromise my brachial plexus. Scapular instability cause postural problems. Scapular instability means I can’t lay on that side, scapular instability means that I am more likely to compromise the very nerve which causes scapular instability (long thoracic nerve).

One hot summer night I was having trouble sleeping (due to TOS) so I lay on the chi ball on the floor near the foot of our bed. I fell asleep on the floor. When I woke up I did not have the disgusting headache which extended from the right of my thoracic spine up the right back side of my neck and across the top of my head which I normally woke up with since my condition had deteriorated. I slept on the floor each night for over a year. I worked out that it was lying on my affected scapula which was causing the problem. I fitted a bolster in a shirt that I wore at night time that would a)stop me sleeping on my back or b) if I was on my back would allow my affected scapula to relax away from my ribcage thereby decompressing the LTN, but this was only 50% successful. I spent hours and hours decompressing the nerve by lying on the chi ball on my bed as I used a laptop on a special table to complete my OHS&W studies. Using my arm compressed the nerve, sitting compressed the nerve, lying on the scapula compressed the nerve, relaxing on the chi ball decompressed the nerve, taping my shoulder back decompressed the nerve, wearing an elastic brace to pull my shoulder down and back decompressed the nerve.
Whereas my life had improved it was a balancing act between compromising and all the consequences, and de-compromising and not being able to use my arm. An Occupational physician diagnosed partial long thoracic nerve palsy after conducting nerve conduction tests. 2 years earlier a neuro surgeon had asked me to push against a wall and dismissed long thoracic nerve palsy as a possibility!!

2006 brought chest X-rays for hypertension showed that I had hyper-inflated chest fields, pulmonary function tests which made my scapula stability significantly worse, breathing medication (pulmicort) which made my rib cage relax (it was as though I was sleeping on a different mattress) and an improvement in my condition.
In 2007 I told my story to a physiotherapist who recommended another physiotherapist who suggested other breathing medication, my doctor prescribed symbicort, since taking symbicort my scapular stability has improved such that I believe I will recover completely. Since taking the new medicine I have not had the same headache as I awake in the morning. I sleep without the bolster between my shoulders. My scapula stability is the best it has been for over seven years.

For many years I have been attempting to decompress the long thoracic nerve from the outside by using a chi ball, a shoulder brace and taping, I now can decompress it from the inside by breathing properly. Previously the physiotherapists had told me that I was chest breathing, they showed exercises to improve my breathing. These were unsuccessful.
I have since learnt that chest breathing is also known as paradoxical breathing, it affects persons with other conditions such as fibromyalgia, COPD. I found that intra-abdominal pressure can precipitate paradoxical breathing.

I believe that paradoxical breathing is the reason that TOS sufferer’s bodies do not heal. I believe it is the reason that it is so difficult to sleep, the reason that nerves are compromised, the reason that sitting is uncomfortable (intra-abdominal pressure), the reason that we do not receive the benefits of proper sleep, the reason we are exhausted, one of the reasons that the our ribcages are sore, etc.

If you are having trouble sleeping I recommend that you
• Fix a bolster between your shoulder blades (on a tight garment or taped to your back) which will not be completely absorbed into a soft mattress.
• Not use medication that will allow you to sleep through nerve compromise which will make you situation worse
• Use a segmented pillow that allows your neck to be straight when you are lying on your side
• Not lie on your affected arm
• When lying on the other side keep the affected arm on the top and don’t allow it to fall to your front
• If your scapular stability is really bad place a thin pillow between the affected arm and your ribcage when you are lying on the opposite side
• If you can convince a doctor that the chest breathing is significant and you are not responding to other strategies to correct the problem try for some medication.

I understand that my perspective is controversial however can anybody tell me how TOS can start on one side then after some time appear on the other side if it is not due to something which is common to both sides (paradoxical breathing combined with spending increased time lying down)

I hope this may help someone regards towelhorse.