hi everyone,
my OHS training has shown me that usually incidents don't occur because of one reason but usually a combination of many reasons.
when my condition was worse and i was in a work hardening program i was asked to use an orbital sander to sand some wardrobe doors. i used my left hand because my right hand was already tingling, because it is my affected side. a day later my left wrist swelled up to the point where i had to see the doctor and i could not use my hand. nuclei (radioactive dyes) and xrays showed it to be a problem with the trapezium bone, an old motor cycle injury.

i was asked to take double anti inflammatory medication. this worked remarkably well, the inflammaton subsided to the point where there was no problem within 4 days. not working and taking the anti inflammatory drugs was making my scapular stability and tos better too. a pt had shown me that my scapular instability was evident when i put both my arms straight up in the air. my affected arm would be right next to my ear as my affected shoulder rose also, whereas my left shoulder would not rise.
i was feeling so good i thought would see if there was an improvement.
i was standing at the back of my house, i could see my reflection in the window so i took my shirt off to see if my r shoulder rose if i put my arms straight up. it felt good. i dont know why but i attempted to pull down my r scapula with my lower trapezius. something felt strange. i put my shirt on and moved inside. within 30 secs there was the worst pain that i have ever known in my upper back. i was doubled over and could not twist my torso. the only thing i could do was lay on the chi ball. this gave relief. but the chest breathing was happening in the most evident way.

almost two years later, one evening i had assisted my elderly neighbour with repairs to a special electronic chair with some soldering (US sodering).
20mins later my breathing was so affected i went to the hospital. prior to TOS i had never had breathing problems (one of the reasons TOS will never be recognised as a work related injury is because there are so many strange symptoms,the payouts would be enormous, it is only when a cure is found that it will be acknowledged)
much ventolin later, then a course of prednisalone (this made the pain down my neck and under my scapula improve enormously, i originally thought it was the anti inflammatory effect of the prednisolone which had improved the pain , but now know that it is the improved breathing which stops the LTN from being compromised)
a letter from the hospital to my doctor brought the breathing problem into focus. my doctor asked me if i had started taking the new course of anti inflammatory drugs he had prescribed. i said i had been taking them for 5 days. he told me to stop taking them.

http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract


i know that if i take nonsteroidal anti inflammatory drugs (NSAIDS) and i have muscle spasms in my upper back, i will get breathing problems.

i have read that it is in the thoracic spine that most of the nerves that constitute the autonomic nervous system (sympathetic and parasympathetic nervous systems) originate. i understand that it is with manipulations of the thoracic spine that chiropractors claim that they are able improve the working of the autonomic nervous system. i know that when my chiropractor
makes corrections to my spine. a) muscles relax in the area and B) there is an indescribable change.

not taking NSAIDS has improved my condition

see you later towelhorse

If you don’t think that I’ve lost the plot and you want to improve your condition, here are some things to do and some things not to do.
As you all know I believe that the majority of TOS conditions are caused by scapular instability. This isn’t the common view. I believe that the long thoracic nerve, (LTN) which innervates the serratus anterior is partially compromised. This compromise is varying. In my situation some doctors discounted LTN palsy by asking me to lean against a wall and try and press my weight away from the wall and they would look for a winging scapula if they did not see the winging scapula they assumed the nerve was OK. After the third doctor asked me to do this and my scapula did not wing out. I said to him ”watch this”, I picked up a pair of weights in my hands and held them out in front of my body at shoulder level. My right scapula moved upwards and away. He later performed nerve conduction tests which showed that I had partial LTN palsy. I am a medical layman but I don’t understand the logic that the other doctors were using, that is, if my scapula did not wing then the LTN must be ok. My understanding is that there are three roots for the nerve and many twigs, what if one of the roots or some of the twigs were compromised what did they expect to happen?

THINGS WHICH COMPROMISE THE LONG THORACIC NERVE (if it is already partially compromised)
1. chest breathing and deep breathing
2. increasing the pressure on your diaphragm (eating too much, being overweight, bending down to the ground to pick something up)
3. stabilizing one’s scapula ( the higher and the further from ones body the greater the scapula stability required)
4. stabilizing ones scapula for long periods of time( driving, using the keyboard, reading the new paper)
5. laying on the scapula( on your back, on your affected side eg sleeping, sitting in a high back chair)
6. having your arm supported and therefore lifting the shoulder(resting the arm on the door with the window wound down whilst driving).
7. tilting ones head back and towards the affected scapula.
8. rotating the scapula in a way that makes it grate and scrape on the rib cage
9. manipulations by treating health professionals
10. combinations of all of the above (which is daily living)

THINGS WHICH WILL ASSIST TO LESSEN THE AMOUNT OF COMPROMISING OF THE LONG THORACIC NERVE
1. abdominal breathing through retraining or asthma drugs
2. decrease pressure on diaphragm (lose weight, don’t sit down after meals, use devices to pick things up
3. limit the use of the affected arm.
4. use strapping tape and/ or a brace to hold shoulder girdle steady
5. don’t sleep. (only joking, don’t sleep on affected side, use support between scapula to lessen pressure when on back)
6. don’t adopt postures which prop shoulder up
7. gentle neck stretches forwards and diagonally away from the affected side improve scapula stability
8. never rotate scapula or make it grate or click.
9. avoid medical treatment in the area that is between ones neck and the scapula on the affected side
10. don’t expect to have normal life ( you have a disability which will not allow you to do so many of the things you used to)


regards towelhorse

Hi Towel!

I will admit I had to read your posts very quickly because I can't sit at the computer for very long at all. I live in a pain hell - my injury started in 2002, I had the surgery with Annest on the right side (rib & scalene removal) in 2006. I've had all of the testing possible, except for Collins / Filler imaging.

Now, to follow, I have questions for you. But first, a few of my particulars.

Taping doesn't work for me at all. Neither does PT, and I was in Denver for their PT but they couldn't even get me from the hospital to the PT because I was so much in pain and immobile. Annest and three other of his docs voted go home. I have a feeling that it may be a difference of less vascular and/ or posture (I've always had very good posture and breathing from choir), but is a result of long hours at computer and is all nerve related. I honestly believe that every TOSer is different, and that some find relief from specific PT, taping or methods, while ANY movement on my part causes swelling and pain. Nevertheless, for general health as whenever I can, I get out of my bed and walk or use a stationary bike. If I go to PT, just getting there in the car causes a two week flare. When I go to UCLA, I go via bed in the car, and have a week of straight sleeping / bed upon return - that travel is hell on me.


I have had a ton of color and temp changes especially to my hands and upper chest, neck and face,

weird swelling in ALL places, but especially my neck and fingers,

my pain started with right upper, then neck, left upper bod, then left leg.

Also up neck, swallowing problems, ears, teeth, jaw, face numbness,

tongue numbess and huge swelling after dentist for 6 months,

and last few months, hands to elbows and legs go totally paralyzed for a few hours.



I've seen 28 docs, one is a world famous neuro in Bev Hills, one is UCLA neuro who runs pain clinic, and all say this is progression of nerve damage from TOS. Some (including Annest) say I also added RSD and fibromyalgia is now a main problem. But again, just as accredited, if not more, neuros are adamant the paralysis is TOS progression.

QUESTIONS FOR YOU:

Have you had the facial problems?

Lower limb symptoms?

Have you had the paralysis - full paralysis where the limbs just won't work? (And this doesn't happen due to exercise or not, it's been after both.)

What about the color changes?

I am just curious because I have noticed certain people here get relief via PT, while others such as me try PT but end up flaring, but keep trying maybe water therapy...

My current therapy is my aide who smooths out the muscle lumps three times a week. We also go on walks about once a week. But if you've read my other thread, my circular flares are going in a progressively down pattern, ultimately. Next stop is going to detox of meds in a 2 month program, if insurance approves.

Thanks for reading. I looked forward to hearing from you!

Welcome - you've brought some new views for sure!

Tam

tshadow I feel for you. I have frequent pressure and color/temp changes in my hands and swelling across the clavicle area, neck and underarm. My vascular surgeon has sent me to a neurosurgeon for evaluation and he is leaning away from the previous TOS diagnosis and hoping for a new diagnosis of cervical vertebrae/ disk damage. I'll be having MRIs of the C-spine and brachial plexus tomorrow to narrow things down.

Have you had anyone look into the possibility that you have an inflammatory disorder? That's one of the possibilities on my medical list due to the swelling I've been having. My vascular surgeon argues that swelling isn't symptomatic of TOS and is trying to assure me that it's something else, though my orthopedic surgeon seems to be sure it IS TOS and as I've said the neuro thinks it's C-spine damage. Anyway, if you're having swelling in other areas maybe you could address that separately and see where it leads. I wish you the best of luck and speedy healing.

Reply to Tshadow

Here in Australia TOS is not well received, especially if it is a work injury. It became obvious that the stranger the symptom that I reported the less likely I was to be supported in my case. Weird things were happening as my condition became worse. It is a lonely place where one is afraid to report one’s symptoms for fear of being placed in the illness behaviour, non-compliant, unbelievable basket. The doctor who supports a TOS sufferer in Australia takes the hard road.
To answer your questions
1. colour changes—cyanosis in my right hand seen by many
2. cold hand often—most often after using my affected arm (stabilizing my scapula) and then sitting down (pressure on my diaphragm)
3. swelling – fat fingers on my affected hand
4. pain in teeth—lower front teeth felt as though some one was blowing cold air on them
5. pain in neck—initial wry neck but months later the pain which moves from the affected side at the back of the neck and gradually makes its way up the back of the head and across the top of the head and sometimes down the side of the face. This I believe is caused by sleeping or resting on the affected scapula
6. paralysed—my right hand became so useless I couldn’t sign my signature and at times my fingers would curl up in a strange way.
Here are some other symptoms that were strange
1. a sensation on the skin on my upper back in sync with my heartbeat
2. tinnitus (ringing) in the ear on my affected side
3. loss of sensation on skin near my thoracic spine
4. thoracic clunking (once felt by PT when I was performing exercis on it e)
5. sensation on rib cage under my armpit as though there was a marble sewn into my shirt and my arm was exerting pressure on it
6. pain in my legs ( I am sure that when tension is placed on nerves it affects nerves in other places, see reference to slump test in earlier post)
In my situation the drugs I was given made my condition worse. NSAIDS changed my breathing (see aspirin induced asthma), gastro oesophageal reflux, vallium made me lose perspective, sleeping tablets allowed me to sleep through compromising nerves, pain killers didn’t.

The physiotherapy assisted in some ways, but all the good was undone when I was asked to do something such as a neural stretch or lift weights or to try and correct such things as head forward posture or truncal strengthening.

I had some water therapy. When I relaxed in the warm pool it was fantastic. Erector spinae muscles could relax. Then they asked me to perform exercises involving stabilizing my affected scapula this caused major problems as compensatory muscles went into spasm and tingling sensations worsened in my hand. If they don’t understand what is occurring it is likely that they will eventually make the situation worse as they test you out in their trial and error process. Then when they make you worse, they don’t accept that it was as a consequence of their actions, but this is human nature I suppose. The unfortunate thing is that the treatment process will not evolve unless mistakes are admitted.

I was unable to sit at a computer for any length of time without suffering symptoms. I overcame this problem by
1. laying on the chi ball on my bed and using a lap top computer on an adjustable table (picture in an earlier post) the table can be adjusted for standing up also
2. using an ergo chair(also pictured), a wrist support, which stops one needing to stabilize the scapula as the wrist support takes the weight of the arm

as I have mentioned before, I believe it is sleeping on chest breathing ribs against nerves which perpetuates this problem. If you are able to stop chest breathing and can work out a way not to sleep on the affected scapula I am sure you will improve.
One of my doctors and later my chiropractor treated the muscle lumps (knots) with a procedure called dry needling. This is different to acupuncture. Knots which had been in the muscles in my back for over 2 years were able to relax after this treatment. When the tiny needle was placed into a muscle with a knot in it, there was a sensation similar in feeling to that which one feels when one puts a 9 volt battery on your tongue. This sensation would only occur in muscles with the knots. The sensation of having the muscles relax was wonderful. good luck regards towelhorse

Towel,

So yes, it's TOS we've all got, the symptoms may not be exact but are so similar and/or exact. What a lovely condition, huh?

And for Tempus, YES, for several years we wondered if an immunological or other disease process was underlying or along with the TOS, but all of the blood work and neuro stuff came back no, (except I did have one out of three markers for MS, which doesn't equal MS then.) That's why I stress now that my "world famous" neuro / immunological doc says it is ALL TOS, as do my primary neuro and pain mgt. doc. What seems logical isn't. But it did stop my fears of say having my lungs stop working or other muscle systems stop.

But when I say my hands to elbows paralyze and legs paralyze I do not mean they hurt and swell and don't work, I mean that no amount of strength or effort will make them budge. This is new since Christmas. It's the most frightening because obviously I can't eat and basically I'm either a quad or paraplegic during those hours. It's a totally new sensation and loss of ability. I believe HopeLivesHere now also expereiences this.

I write this not to scare anyone, but just FYI what this TOS is doing. I am currently sleeping one hour on, one hour off, and I am a total zombie. I am waiting to "crash", where I'll sleep on and off for a whole day to catch up - those are scary because I don't eat, don't even hear the phone and can't talk...I am so exhausted by then.

Hugs to all, and I am sorry we are in this boat together, but I do draw so much strength from the "up" posts right now.

hi everyone,
The long thoracic nerve (LTN) is a nerve which innervates the serratus anterior muscle. The serratus anterior muscle is the muscle which helps stabilize the scapula when you use your arm. The higher or further away from your body that you move your arm, the more the serratus anterior is brought into play. The serratus anterior in combination with the pectoralis minor move the scapula around the rib cage when you reach forward. The serratus anterior is said to be used in deep inspiration. Complete severing of the nerve will cause winging of the scapula.. It usually has 3 roots in the cervical spine. The two roots from c5,c6 pierce the scalenus medius and then join with the c7 root as it travels toward the serratus anterior muscle. Compromise of the nerve is thought to occur in a few different locations along its path. Spasm to the scalenus medius muscle, bowstringing across a facial band as the scapula migrates upward, angulation as it crosses the second rib and the nerve might be compressed between the coracoid process and the second rib. (source: Mapping the course of the long thoracic nerve http://www.neuroanatomy.org/2004/002_007.pdf ) the experts don’t know why but in the majority of cases people suffering from LTN palsy recover within 6 months to 2 years. That is of course if they are correctly diagnosed and they are not put on work hardening courses or other strengthening courses which do not allow recovery.
When I was at my worst, a pt said that I was chest breathing, this was not significant to me because I was feeling so bad that I was glad that I was breathing at all. Now I am taking medication for my breathing problem, the difference between chest breathing and abdominal breathing is obvious. To allow people who have not had the problem or have become so used to chest breathing to understand chest breathing, it is like putting your arms at 45 degrees above your head so that your chest opens up as wide as possible and then calling this your “at rest chest position” and then try to breathe in further still. To put it another way if you can imagine the normal cycle of deep breathing goes from -10 to 0 to +10, and normal sedentary breathing was -2 to 0 to +2, then chest breathing +2 to +4 to +6

As I have remarked before investigations into hypertension showed that I had hyperinflated lung fields, and pulmonary function tests (deep breathing tests) caused soreness to the area between my neck and the scapula on my affected side and as a consequence I lost scapula stability, my arm felt heavy and then there were symptoms in my hand. The medication (pulmicort) reversed this condition. Made my ribcage softer, my bed felt as though it had a new mattress. Exercises which had left me physically distressed previously, were now a doddle.
The medical book Grays Anatomy (1976) says regarding the serratus anterior “It is claimed that electromyography has finally disproved the popular view that the serratus anterior is an accessory inspiratory muscle; but the foot note reference cited , (100) refers to work on dogs , whereas an electromyographic study on man, (101) ignores the effect of fixing the scapula by holding onto , say, a bed rail, railing, and so on as asthmatics and athletes may be seen to do! This problem is not yet resolved.
This is an awkward quote, essentially what they are saying is they have proved that the serratus anterior is not used to assist breathing but if this is the case why then do asthmatics and athletes who have just run at their limit tend to hold onto a rail to assist breathing by stabilizing their scapula. maybe it is the other way round. Maybe deep chest breathing causes compromise to the LTN which would weaken the serratus anterior therefore asthmatics and athletes hold rails so that they can relax their scapula against their chest wall and therefore not compromise the LTN as it travels under the scapula.
If you do an internet search of breathing + TOS or Chronic fatigue syndrome or T4 syndrome or RSI or RSD or Gastro oesophageal reflux or OOS or WRULD or ………. You will find that so many of these conditions require that the sufferer practice abdominal breathing. I can only assume that this is in response to the sufferer being a chest breather. What if the chest breathing is as a result of a neurological consequence of their condition. It seems strange to me that they hand out bucket loads of drugs for all manner of symptoms but none for the breathing problem.
Regards towelhorse

Thank you Towel horse so much for this thoughtful and provoking exchangel

Hi everyone, it has been a tougher week , somethings haven’t gone how I wanted them to go and at those times I look for something that will lift my spirits, I find comfort in passing on some of my experiences which may assist someone somewhere.
On Thursday at my workplace we were conducting an “intensive” (analysis) with a view to implementing lean manufacturing principles into our business. This involved video taping co-workers as they carried out the existing processes. One process required that I hold the small camera for 35 mins continuously at head level, zooming in and out. This can only be done with my right hand (affected side).
This has meant a marked decrease in my scapular stability and therefore some other undesirable symptoms. Because of my general improvement, the pain associated with the loss of scapular stability is quite obvious compared with when I was worse and had the many layers of pain in that upper thoracic area and therefore one more pain was less significant. Now I always wear my shoulder brace when not sleeping, but when something untoward like this happens, the brace isn’t enough. As soon as my wife taped my shoulder back, the pressure on the nerve (LTN) under my shoulder blade was lessened and later the hand symptoms subsided. I have been told that not everyone has had success when they tape their shoulder back. Sometimes when my wife has taped my shoulder, within ten minutes I have had to take it off as it has made things worse. I find it is important to set my shoulder properly before it is taped. This does not mean pulling one’s shoulder back, as in standing “to attention”, it is more like rolling your scapula in at it’s point closest to your spine without pulling your shoulder back too much. I call it tucking my scapula in.

One of the strategies that is used by some therapists to hopefully improve the condition of sufferers of TOS, is to ask the patient to improve their posture such that the sufferer imagines that they are opening up their thoracic outlet. This usually means the sufferer is made aware of their poor posture and it is recommended that they correct the poor posture by pulling their shoulder back. This may work in the short term as the sufferer uses compensatory muscles to correct the apparent problem, however it is my opinion that this is not a sustainable position and the compensatory muscles cause other problems such as T4 syndrome and rhomboid muscle problems. I believe that they should be telling TOS sufferers to avoid using the affected arm and avoid actions which increase the pain in that upper back area between the neck and the scapula on the affected side. After a while one’s condition will improve, the temptation is to try and do things in a normal way too soon but unfortunately this can flare up the symptoms again. It is important that the sufferer and the insurance company is patient with their expectations. I have taken many pain killing drugs and they just masked the problem allowing me to do things which made the root cause even worse. if you can improve your condition without using pain killing drugs you will know that you are not worsening the underlying cause of your problem. I wish you all well regards towelhorse.

Is TOS an anatomical abnormality, a postural problem, a psychological disorder, a neurological disorder or a means of receiving an income?
Is TOS a cause, or a consequence of some other unrecognised condition?
What causes TOS? Why is it so difficult to cure? Are the symptoms of TOS being treated rather than the root cause? Does the treatment make some sufferers worse? (my treatment did). Is calling the condition TOS, making an assumption of its cause therefore hindering an understanding of the condition? Will recognition of the condition be at a cost that society (medical system, work injury system, employers) can not afford? Is it therefore necessary to find an effective cure before the system will accept it as a bona fide condition?
Should it be called hyperabduction syndrome?
When they categorize the sufferers of TOS it most often includes professions which require arm postures that are overhead or constantly out in front of their body.
Other characteristics are, in the 3rd or 4th decade, overweight or unfit, incorrect shoulder posture or trauma.
This link gives a perspective.
http://www.medschool.lsuhsc.edu/Neur...enter/TOS.html
maybe tos is not caused by the profession but rather the profession does not allow a body injury to heal , whereas another profession would. I know that if I injured my knee playing football I would rather be working in a job behind a desk than working as roofing contractor.

I hope you are managing well regards towelhorse