Hi all,
Why towelhorse?
Once I was trying to come up with a user name and my first 3 choices were already taken. Fortunately/unfortunately a piece of furniture that I had made was nearby. It was an Edwardian style towelhorse which was going to be part of a range of bathroom furniture that I was hoping would be the start of a new cabinetmaking business. Unfortunately TOS prevented any of this happening. My passion is art nouveau, arts and crafts or mission style furniture. I suppose I was lucky that our pet dog was not nearby and doing some indiscretion whilst I was looking for a user name. ( you may have heard that joke before)

Regarding posture, posture posture, I believe that the poor posture is due to scapular instability, if the scapular instability is due to muscle weakness from nerve compromise, then the only way one can maintain “correct” posture is to overuse other scapular stabilisers, this will cause all sort of problems. you cant maintain proper posture if there is LTN compromise. Posture will return when scapular stability returns.

The description on the note with the chest Xray was “hyper- inflated lung fields” which is very much different to hyperventilated. Hyper-inflated lung fields is a symptom of chronic lung disease. I don’t have chronic lung disease. A chest x-ray 18months prior to my injury showed no signs of Hyper-inflated lung fields. The changed breathing patterns are a consequence of TOS. They are the main reason that TOS sufferers remain TOS sufferers. Their consequence should not be underestimated.
The way that I describe breathing with Hyper-inflated lung fields is --- if you imagine that normal at rest breathing is a cycle and it moves from +3 to 0 to -3 and normal deepest breathing is +10 to 0 to -10 then . Hyper-inflated lung fields causes at rest breathing to be +5 to +2 to -1 and deepest breathing is +10 to +2 to -8. Now that my breathing is corrected I show people what it was like by taking a half breath in and telling them that this is what the middle of the breathing cycle felt like. breathing was hard work compared with now.
As I have described previously, after my breathing improved lying on my mattress felt as though I was on a different mattress. I am sure there are other TOS persons who would benefit from medication to improve their breathing.
I take no other medication for TOS. Regards Towelhorse

Towel,

I don't think you really answered my question, which is how can you believe that hyperlung diagnosis can have any correlation to TOS, when it seems to actually be the opposite, since our muscles tighten up, not loosen, and, as by Edgelow's PT findings / retraining / recommendations, as well as from what I know from our community here.

Again, I find the hyper-lung thing to not be believable for most of us TOSers. Most of us (that I have met) are hypo-lung - meaning, we cannot take deep breaths.

Please see this link, third question down, I believe, which says:

Q. My mother who is 62 had a bad pain in her right side and went to the doctor, who did a chest x-ray. When the result came back, it said that she had hyperinflated lung fields consistent with COPD and a small nodule, which was a granuloma in the upper right lobe.

Mum is a life long non smoker, her husband and kids don't smoke either. Her parents smoked but she stopped living with them 40 years ago. She doesn't wheeze or cough or get bronchitis. We are very concerned - what could have caused the hyperinflation or COPD?

Kris

A. Dear Kris, Hyperinflation on a chest x-ray, just indicates that the patient can take a big breath. It does not measure lung function and by itself, does not mean much.
If the nodule is calcified, it is indeed a granuloma. If not, it needs follow-up. Lung cancer is not common in non smokers, but does occur, particularly in women.

Dr. Tom

http://yourlunghealth.org/dr_tom/arc...60/drtom52.cfm

I am not trying to argue, just pointing out that Edgelow indicates this as well, and encourages / teaches us to do deep abdominal breathing, as it was explained to me by Cyndy and his paperwork. Deep abdominal breathing is key - so are you doing the opposite? What is your PT for this?

And again at this link:

http://www.bmj.com/cgi/content/full/332/7552/1261

the hyperlung is related more to smoking or dust / inhalation histories - and I just don't see the connection to TOS yet.

As for your conclusive statement:

The changed breathing patterns are a consequence of TOS. They are the main reason that TOS sufferers remain TOS sufferers. Their consequence should not be underestimated

I have to ask you for a foundation for that - as I have never, ever read that before, I do not have hyperlung issues (I have hypolung issues) and I do not see it in the tens of TOSers I have interviewed.

Again, I am not trying to just be argumentative, I just don't see the correlation, nor do I feel it is supported by my anecdotal references OR any medical articles on TOS.

I have to ask some obvious questions, and that is, were you EVER a smoker, lived with any smoker, or, worked around ANY type of fumes? Unless your answer is an adamant and complete answer to no to ALL of these, then I think you have an additional diagnosis to your TOS, not that the TOS caused the hyperlung, or, I wonder if it was a one-shot situation, such as, a particularly deep breath that was held while Xraying?

Did you ever see a pulmonary specialist for this condition?

I know that we're all trying to figure out TOS, but I really think this path is not the norm for most TOSers...

P.S. Just as an aside, we may not have the same type of TOS. The fact that you can live without major pain meds is not the same as my experience - from day one of TOS I've had 9, 8 pain, consistently, almost to the point of insanity. This seems to be somewhat common from the neurogenic TOS where the docs / test do not reflect an obvious compression, and the TOS came from repetitive work. I don't know the cause of your TOS.

God bless.

Tam,

I think you and Towelhorse are saying the same thing - but not understanding each other. The Q and A you provided, in the A, should have stated, "just indicates the patient CAN'T take a deep breath", IMO. If you have to work really hard to get a breath (think blowing up a balloon) your lungs likely will become hyper inflated, cause they aren't working efficiently - a normal intake of oxygen doesn't do enough for you anymore.

I know I've had this experience - and yes, I smoke, but I've never had shortness of breath from it, not noticeably anyway - and I used to work with 3 & 4 yr olds who really kept me moving! It's that "idiosynchric" (sp?) breathing pattern, or whatever they call it, it seems we all are affected by this, my Feldenkreis instructor in Denver pointed it out to me after surgery in 2004. I still do it when I'm not focused on breathing from my diaphragm, and using ALL of my lungs. You feel like you're gasping for air. I think it's almost a guarding action, to keep from hurting more in the chest area we subconsciously alter our breathing pattern - just a thought.

YOU, my dear, may be a whole different story - because you've been bedridden so much!! I know in nursing homes they turn patients every so often to prevent bed sores, but is that also to prevent lung problems like you've developed? Can you ask your home aide? It can't be beneficial to lay in bed for so long, make sure you are propped or the head of the bed is raised by placing some boards under the top legs.

Have you had any sleep apnea testing done? Maybe when you come out of one of those horrible flares and then sleep 2-3 days to recover, you're not taking in oxygen efficiently enough while you sleep. A CPAP might be helpful (if you aren't already using one). This is something you could talk to your Dr about over the phone, and he could RX and they would bring to you Tam, I'm pretty sure.

We could probably all benefit from raising the heads of our beds - but mine's an 800-lb waterbed so not an option. One of the first things I'll do if my case ever settles is to replace it with either a Memory Foam or Sleep Number Bed. Some day. Some year. Hopefully this decade.

If I can find it again, I saw an article that referred to this changed breathing pattern - but I've got to clean up, take girls to get some things for colder weather (whimper), and then meet dh and in-laws for dinner. Oh boy, the mall. Don't you love my enthusiasm, LOL!

beth

Cyn-
How's your flare today? I hope you are doing better!

Towelhorse-
as long as this thread is partially hijacked please let me ask this Q? here and you can reply wherever you see fit--
What is the relationship between the long thoracic nerve LTN and the Longus Colli muscle that I have been told to strengthen due to TOS by Peter Edgelow?

I'm doing good today comparable to these past weeks.
I think it was all the excitement meeting everyone at Johanna's.
Still had pain as you can see from the pain patches and layed on ice on the floor and took meds.
We all sat in a circle and had a med exchange on the floor just like at a crack house.
JUST KIDDING...no such thing happened.
I have no idea what goes on in a crack house.
I'm making up stories

THANKS for ask though

Hi all,
Some answers to questions
1) I smoked 1/3 of 1 cigarette when I was 15 I have never smoked since, I do not use marijuana.
2) every one lives in an environment which might cause COPD, some environments increase the likelihood. Mine is not special
3) I did not have any breathing problems until I developed TOS.
4) I was told by 3 PTs that I was chest breathing after TOS
5) They did not explain why I might be chest breathing
6) They were unable to change the way I breathed
7) Did I see a pulmonary function specialist?
Yes, 2, I had (moving) x-rays of my diaphragm I performed 4or 5 pulmonary function tests in sealed chambers. The tests made my scapula more sore—and I had increased symptoms in my hand. The results indicated that I was mildly asthmatic. Most people if they were tested would be found to be mildly asthmatic. They did not answer why I had hyper- inflated lung fields, this did not add up with mild asthma
8) Some clinicians suggest that changed breathing patterns ( in TOS sufferers) are as a consequence of pressure on the sympathetic nervous system at T2 eg tight thoracic spine muscles. I can find these links if you like
9) Gastro Oesophageal reflux increases the likelihood of breathing difficulties, non steroidal Anti inflammatory drugs increase the likelihood of Of GORD, in the US its called GERD, I took significant amounts of NSAIDs I do suffer from reflux.
10) Respiration is made up of two cycles, inspiration and expiration, inspiration uses a significant number of muscles , the expiratory phase is largely passive, the recoil of the chest wall and therefore lungs raising the pressure and expelling the air. Therefore as I had and many others who have many muscles in spasm in their rib cage have noticed breathing is difficult.
11) When my lungs were hyper -inflated I could not take deep breaths because they were already partly inflated so I could not breathe in much more before they were full. My ribcage would not let me completely deflate them.
12) I am reluctant to agree with any medical experts because
a) I have had so many experts disagree with my diagnosis
b) Medical knowledge is changing constantly ( 15 years ago the experts would have said that my mother’s cirrhosis of the liver must have been caused by excessive alcohol consumption, now they know that it is because she has haema-chromatosis, for years they said that stomach ulcers were caused by stress now they know it is a bacteria ( someone one a nobel prize for medicine in 2006 for this discovery.) they, the experts, get it wrong right up to getting it right.

13) I have taken bucket loads of drugs. Celebrex , norflex , capadex, Feldene, ducene, ibruprofene, sleeping tablets (cant remember their name) and many others. They did not improve my condition. The symbicort has made a significant difference. If you are not able to breathe abdominally (eg the PTs can not help) do you just go bad luck, or do you use a drug which will give the rest of your body the chance to normalize.

Fern I know of no relationship between the longus colli and the long thoracic nerve. I can only speak of my own circumstances regarding muscles which were noticed to be weak or not functioning correctly in my neck and around my scapula.
I was told that I needed to do chin tucks to strengthen neck muscles as my head was in the forward head position. When I attempted to do these, the symptoms in my hand and arm increased immediately. When I taped my shoulder back the symptoms would decrease markedly. I could move my chin back without it having the same affect. I taped my shoulder back for over a year as I could not return to having those terrible hand symptoms. Unfortunately continuous taping caused dermatitis. Time without tape meant hand symptoms and chin forward. I am sure that my chin went forward to lessen normal brachial plexus (BP) compression which became significant when I was compromising my BP behind my pec minor when the tape was removed.
I was told my lower traps were weak, this is a long story but essentially I am sure they were not weak, they were releasing to remove pressure from a sensitised LTN which was under my scapula. So the PTs saw imbalances, reacted in the only way they knew ---- strengthen muscle--- but they did not consider nerve compromise…. They already stand out on a limb when they suggest that the BP can be compromised between the scalenes, many surgeons believe this is a myth. The suggestion that other nerves might be compromised by muscles would really be sticking their neck out , so to speak ( please excuse the pun).


14) tshadow writes--- P.S. Just as an aside, we may not have the same type of TOS. The fact that you can live without major pain meds is not the same as my experience - from day one of TOS I've had 9, 8 pain, consistently, almost to the point of insanity. This seems to be somewhat common from the neurogenic TOS where the docs / test do not reflect an obvious compression, and the TOS came from repetitive work. I don't know the cause of your TOS.
my profession was installer of blinds and awnings, ( a high risk TOS group) working above my head most of the day. I have had many MRIs, nerve conduction tests and x-rays none of which indicate any type of compression of my Brachial Plexus. It was only because ( after 3yrs) I showed an Occ. Physician how my scapula mis behaved when I held a weight out in front of my body, that he decided to do a nerve conduction test on my LTN which showed that there was partial compromise. Now many experts have seen the serratus anterior weakness and now believe it is significant. Prior to this the experts did a simple little test for winging scapula and therefore discounted serratus anterior weakness. Prior to that they had seen a collection of symptoms and understood that this condition (RSI, TOS, WRULD work related upper limb disorder , CTD cumulative trauma disorder, OOS occupational overuse syndrome) was not one which would be well received and their eyes would glaze over. Many practitioners will not have anything to do with TOS, it is too much of a hassle. They might go through the motions and prescribe a cocktail of drugs.

I rated my condition as 8/10 continuous no drugs helped. A chance suggestion of lying on a chi ball changed everything. The relief from this showed me where the source of the problem was. I know that my TOS is due to shoulder girdle instability as a consequence of partial long thoracic nerve palsy. The reason that my body did not recover was because my occupation required constant and repeated movements above my head. After a while movements in front of my body were sufficient to ensure that I did not recover.
The repetitive movements continually aggravated a sensitized nerve under my scapula to the point where even lying down caused aggravation to the nerve. It was trapped. I was trapped. I believe I have found a way to escape. I hope this may help someone Regards towelhorse

I think there are a couple of things worth pointing out here -

First, as has been said before, there isn't just ONE cause for or kind of TOS, but many, and each person responds very individually, so one person's TOS is often VERY different from another. What predisposes you to develop TOS seems to be really key - whatever congenital susceptibility that makes you particularly vulnerable. If that's something easily imaged and usually successfully treated, like a cervical rib, the outlook is brighter (although getting correct dx and treatment still takes way too long and there are still too many Drs who will doubt you).

And some DO develop it through physical trauma that maybe weren't predisposed - but had fractured clavicles that healed badly, breast enhancement or other surgery that caused nerve trauma or entrapment, or injured themselves by putting extreme demands on the nerves, veins and arteries that feed the shoulder muscle through weightlifting, competitive swimming, playing music for a living or pitching for a pro baseball team.

Most of us don't have cervical ribs, or develop it through fractured clavicles or extreme sports. We have some other, congenital cause that predisposes us. If that isn't a c-rib, a long C-7 process, or a fractured clavicle, then it's a fibrous band - usually a scalene taking an abnormal route through the brachial plexus, impinging on the nerves, maybe screwing with the vein and artery as well. Dr David Roos describes at least 10 variations of these bands that he found at surgery and released. My TOS surgery findings, a scalene minimusthat wandered through the brachial plexus, and an anterior scalene with an abnormal route, are both mentioned.

In addition to the underlying predisposing reason, there's the inciting trigger - was the TOS brought about by acute trauma - what kind? RSI - what type of repeated movement - keyboarding, stocking shelves, working overhead, house painting - different movements = different nerves affected?

One thing that seems to play a big yet not understood role is the inflammation that accompanies TOS and, it seems, most chronic neuropathic pain. We know it exists. We know traditional anti-inflammatories don't help with this kind of inflammation. We know if we push our limits, it's probably the inflammation that's responsible for the rise in our pain later that day or the day after, and that fuels our "flares". If we're good, and do very little to irritate the nerves, we can somewhat control the inflammation, to a point.
But that comes at the price of having almost no life, and of course we can't control the weather. There are also medical and legal appts that have to be kept, as well as family responsibilities, as well as some unavoidable stress, and given the slightest opportunity inflammation strikes us down.

As well there are variables such as age, gender, fitness level (pre-TOS), pain severity, length of time person has had condition, level of disability, co-existing conditions, grief/loss/depression issues, access to treatment, treatment philosophies, legal matters, support systems, finances.

I guess my point here is we are so varied, different in so many ways, I find it risky for anyone to make a statement that "THIS" is the cause of TOS. I think there are more than one. But I think that when they learn more about the effects of nerve damage (and they are doing a lot of research in this area) then neurogenic TOS will be better understood as well.

2. I do think there are "subgroups" for lack of a better word, of people who have similar types of injury that caused their TOS to develop. The lower part of my scap wings, not very noticeably, but more so if I push against a wall. My shoulder fell an inch and a half after getting the tetanus booster that caused my reaction. I had slightly injured my long thoracic nerve (stretch injury) trying to pick up a bag of groceries while I had a bag of school books and things slung over my shoulder 4 months earlier. Just had a 30-second burn in the shoulder, dropped everything, didn't see a Dr, rested the arm. Didn't carry anything on the shoulder for a week. I was fine, full ROM, full strength, no sx of any kind.

The tetanus shot affected the spinal accessory nerve, but the long thoracic must not have been completely recovered, so the whole shoulder dropped. I'm positive this is why I needed the pec minor tenotomy. The EMG showed chronic denervation of the medial cord (and parts of the lateral cord). Well, it only follows that there would be major consequences in that area since the whole shoulder girdle collapsed down onto it!!

Anyway, if you are winging, I encourage you to consider what towelhorse has to say - either the long thoracic - or, if your shoulder is drooping, the spinal accessory, may be entrapped, palsied or somehow irritated. While not considered part of the brachial plexus, they do travel nearby and can be affected by many of the same problems. You can't maintain or achieve shoulder girdle stability if these nerves aren't functioning properly.

beth

ok now that you have made me laugh so hard I snorted....and not the crack...oh perhaps that the best way to use that drug....lol

You are so hilarious. I can't believe how funny you are!
Bet you are always the one making things light and cracking jokes! I do that a little myself....sometimes I think it gets misunderstood here, so I am glad you are making crack house jokes......yes I get that it is a serious problem....but it was the context I am laughing at.....perhaps you have to meet Cyndy to know!!

thanks Cyn
love an hugs,
Victoria

ps ....oh the many causes of tos and it's dammed side effects!!!

Cyndy,

I hope you are feeling better by now! Sounds like Johanna's get-together was wonderful; one of these days I HAVE to make it out to So Cal and meet all of you. Sorry I helped sidetrack your thread.

Hugs, beth