hello everyone,
i just spent 30 mins writing something which was a satirical comment on the medical system and how it is not meeting our needs but on reflection i have chosen not to post it because there are people who are looking for help not a smart alec critique of the systems inability to comprehend our condition.

i have made tremendous improvements over the last 6 months

i have thought for sometime about the things that make my condition worse they are
1) using my affected arm--it would be so bad that i would have to put it in a sling, i found that if i had a commitment that was in the evening, if i put my arm in the sling during the day prior to going out my condition (all aspects) was more tolerable.
2) sleeping--i have on many occasions awoken to find a) that my neck and head aches (i hate these)and b) my scapular stability (ability to lift my arm out in front of my body, pick things up, open jars) is much worse than the night before. i have spent hundreds of nights on the lounge. i slept on the floor evey night for over a year, with only a 1inch thick mattress.
3) bending down to the ground to pick things up, twisting to get into cars, sitting for long periods
4) putting the affected arm behind my back and trying to reach up my back would be extremely painful and i would lose scapular stability
5) if i had to stand on something that was unstable such as skateboard it would cause muscles in my back and rib cage to go into spasm.


these are the things that i have done that have helped enormously

1) a) taped my shoulder back, this stopped 90% of the funny hand and arm symptoms ( i no longer need to tape my shoulder back apart from one incident when a health professional caused my situation to worsen)
b) i have for the last 3 years worn a shoulder brace made from 2 inch elastic. this has stopped 75% of the muscle spasms in my upper back , the one i use now, i make myself. the brace by itself did not stop the hand problems. when the tape has stopped the hand problems you only need the brace to maintain that situation. the width, positioning and tension is critical. i will try and post a picture of it.
2) one night in 2002 i could feel the neck and head pain starting to happen so i layed on the floor on my chi ball between my shoulder blades. it was late at night and to make it more comfortable i got my special pillow (a pillow that the pt suggested which has a longitudinal divide in it which, for a reason that i dont know, it is much better than a normal pillow) i fell asleep on the floor. when i woke up in the morning i didn't have the horrible neck and headache that i had had for most of the previous 2 years. this in itself is a great thing not to have that happening. the next night to make things more comfortable i used a 1 inch thick sponge mattress that we had. this is a sad thing to be sleeping on the floor and it provided much humour for some people, but who cares i wasn't having those headaches. My hips became really sore to the point where i was limping for the first part of the day. so i got another mattress and placed it on top of the first mattress. but when i made it more comfortable the headaches started coming back. So hipache or headache? we had an OT appraise our situation and she suggested a new mattress, the insurance co. approved. the mattress we chose was made from the hardest industrial rubber available. the mattress co. had never made a mattress from this rubber before. the first morning after sleeping on the new mattress i had the head ache again. in desperation i asked my wife to tape a hard foam block to my spine between my shoulder blades for when i was sleeping. To cut along story short i now have one of those gel wrist supports folded in half and fixed to an old elastic shoulder support positioned between my shoulder blades and i dont get the headaches as long as the support doesnt move. i know for absoute sure that those headaches happen when one is laying on ones back and placing pressure on the affected shoulder blade. Take the pressure off of the shoulder blade and the problem disappears. the reason that i wasnt getting the headaches when i was on the floor was because it was too uncomfortable for me to lay on my back. As soon as i made it more comfortable i started laying on my back and putting pressure on that shoulder blade. the other times i have had the headache are when a health professional has done some work on my shoulder or when i have disregaded the pain and used my shoulder when i shouldn't have done so.
3) when one has irritated the nerve (long thoracic nerve, LTN) and the area between ones neck and under the scapula is sore. if one bends forward and down and stabilizes the affected scaplula the increased pressure in the thoracic cavity places greater pressure on the LTN. if one has put on weight and has a bigger belly this makes it even worse. many TOS clinics suggest the TOS sufferers must lose weight and be aerobically fit if they are to be successful in beating TOS. they don say why losing weight is vital to success. i believe it is because if youre overweight each time you bend forward you increase the pressure on the irritated LTN.
I found that i could not sit down and put my affected arm out in front of me (stabilize scapula) without feeling very uncomfortable. As part of my rehabilitation in 2006 i spent some time in an office. i was required to do some work on a computer. this made the hand/arm symptoms increase. the area that i was in was an area that i wished to be employed in the future. a colleague was going to be in late one day so i took the opportunity to try her ergo chair. the difference was obvious. the ergo chair placed my knees lower. their was obviously less pressure on my diaphragm. this caused less chest breathing, less pressure of the ribs on my LTN. i purchased a foldable ergo chair i use it anywhere i need to sit and use my affected arm out in front of me. recently i have been using pulmicort this has stopped the chest breathing which has decreased the pressure on the nerve. you would not believe how different sleeping in ones bed feels when you are not chest breathing.
4) an occupational physician caused a significant reaction (nerological) when he asked to put my affected arm behind back lift it up and then push away from my back with it. it caused a significant set back in my improvement. it is important not to do as have described. most medical people testing ypu want to see what your limits are. at he endof the day they go home and enjoy themselves, you go home and suffer, it is critical that you advocate for yourself.
5) less use of my affected arm means less pressure on the thoracic spine from compensatory rhomboid muscles. dry needling in erector spinae muscles. chiropractic corrections to the thoracic spine. less compromise to the LTN
(by whatever means) use of a hot wheat bag. and importantly the elastic brace mean that i could now easily stand on a skate board without muscles going tight. i dont have anywhere near full scapula stability i am hopeful that non compromise of my LTN will mean a recovery

a whole heap of circumstances and conditions caused me to get scapula instability and then TOS (age. occupation, fitness, inappropriate rehabilitation, reluctance to stop the things that i wanted to do, wrong medication[aspirin induced asthma, that is reaction to NSAIDS] family committments)

it is obvious that it is requiring a whole heap of preventitive measures to ensure that i dont suffer most of the insidious effects of TOS. but no medication would stop those disgusting headaches. Day after Day.

i hope i have helped somone.