[Jomar]

I don't recall if this has been posted before or not-

Thoracic Outlet Syndrome PART I: A clinical review
Journal of the American Chiropractic Association, Jan 2004 by McKenzie, Kim, Lin, Gene, Tamir, Shai

Abstract: Thoracic outlet syndromes (TOS) describe a group of disorders that refer to compression of the brachial plexus or the subclavian vessels as they pass through the thoracic outlet. Ninety percent of TOS patient complaints are neurological in nature.These syndromes can be named according to the location of compression or the cause of symptoms. Many factors predispose patients to the development of TOS, such as occupation, gender, medical conditions, and genetic anomalies. Diagnosis is largely based on the history and physical examination findings. Most patients respond well to conservative care, but success in conservative management depends on an accurate assessment and development of a treatment plan specific to the patient's needs.

http://findarticles.com/p/articles/m..._n9386854/pg_1

[tshadow]

I thank you Jo for posting this, and what I have to say here has absolutely no reference towards you. And I do hope you'll continue to post articles, and such, and please, again, do not take offense to this post. I love you.

Here's how I feel about the phrase that most patients respond well to conservative care - it's OFFENSIVE to my intelligence.

First off, since '02, I have actively sought statistics, much to my disappointment at finding nil, and, actual patients, anecdotal information, doctor information, etc., and all I have found is that most of us get sick, stay sick, improve to some degree, but never return to what we were. That is unlike MOST orthopedic conditions. Think of shoulder surgeries, knee surgeries, back surgeries...and think of those conditions and "conservative treatment." Do "MOST" respond well? Who knows? Who knows how many of those that respond well later proceed to need surgery ten years later? And of those, how many lose their jobs, and never return again to ANY work at all? I can tell you from my exposure to the work comp industry - MOST return to work w/in a year, and usually either to the SAME job, or at least the same field. Well, that ain't us, folks. (And yes, I'm speaking for myself here, and taking some license to make a generalized statement of my opinion.)

I'm venting here, but it's like those people who say, "well, if you really want to get well, you would (or can), etc." That's what I HEAR when I read those stupid statements like that, and I see them on a LOT of Internet TOS blurbs. I find these statements to be misleading to the new TOSers, and to the older TOSers, it's like a SLAP IN THE FACE.

TOS is an unbelievably obnoxious neurological condition that I do NOT believe conservative treatment does much to stop it. My personal opinion is that most of us have a pretty bad case of it, and that a few get a "lesser" case of it, and for those lucky few, the PT does work a little better, but they're still not cured or "normal." So when these stupid doctors talk about "success" with conservative treatment, I want "success" as measured by the OTHER illnesses, like the ortho, or they way they cure cancer (I have four people now who have beat cancer), etc. If the doctors are going to talk about "conservative care" "working" for "most", then show me those people going back to regular no-restriction type jobs, in fact - show me someone going back to my 70 hour work week, then I'll BUY IT.

For the majority, I believe as hard as we try, and gosh darn it, don't we all try, over and over and over again? Don't we all get sad and tired and give up sometimes, but then pick ourselves up and TRY a NEW treatment all over again??? And as many treatments as we subject ourselves to, when they are not successful as the docs promised or maybe didn't even promise, but do we get mad at the docs? Do we ever say, "hey, you're supposed to know what you're doing. Why am I still unable to drive my car and go to a regular work day after 5 years of these treatments / surgery / blocks / meds??? We don't say that, we just keep trying.

Of course I think that with a good surgeon, with a commitment to continued correct PT and gentle exercise, and with whatever other treatments one finds some relief, we get some measure of quality of life BACK from this horrific condition once it has ERUPTED onto us. But I also honestly wonder if it isn't just the TIME that heals the nerves a little, as Merja promised me years ago. If I had done NONE of this, but just waited four years, would my pain level have lowered a slight amount as it has now? And after 28 doctors, why can't they agree on what I have, how I got it, and how to cure it? Why is there no cure, when articles and Web blurbs on TOS make it look like we do a couple of months of exercises and "voila!" we are cured? Why do we let those Web blurbs get away with it? (I don't, I write to each one and tell them my feelings / story.)

Again Jo, please forgive my rant on your post. Please.

But I'm sick of doctors saying in their article, Oh, just do a little conservative care for a couple of months and the patient will be right back at work...that's just BS and that's insulting to those of us who worked so damned hard in our lives and had no control over this TOS hitting us, nor our inability to return to the jobs, work, or lifetime careers that we loved - not to mention the arts, cooking, kids - my God - the vast majority of us, and I'm not just talking on this Board, but I've sought out TOSers from every nook and cranny, and this neurological condition is one of THE worst. (Admittedly, not the worst, but damned close, damned close my friends, from when I had RSD and my body was in a pizza oven, or the TOS pain is so high, or the fibro so bad that it feels like I've been rolled across asphalt and I'm waiting for an ambulance to arrive. MOST neuro conditions do NOT have this level of pain, I've asked the patients! I talk to them about their pain, and they can't even relate to our levels of pain here.)

I'm sick and tired of doctors underevaluating the pain and the disability of this condition.

I guess that's what's got my goose today.

Rant over. Me sorry.

[Jomar]

No offense taken at all, I must admit I haven't read the whole thing yet. I found it while looking for an answer to someone on another forum. Didn't want to forget about it so just quickly posted it.

I think you're definitely right about the rehab/PT needing more than a month or 2 and they should state that!
Even a semi mild case like mine it took about 3 yrs for recuperation, and I'm still not at full normal.

I really think it needs to be a whole combo approach of therapies & techniques, for the best results, but complete recovery?, I just don't know about that one either.
And when other dx's are in the mix it gets really rough.

It would be interesting to know how many are walking around in some sort of pain or discomfort from undx'd TOS - that is a big question mark for me. But no way to get that info.

[sandy1955]

Amen to tamara......that's exactly my thoughts on this whole damn thing. Like the ***** expecting me to find a job now that she has decided I should, and I'm just wondering what rock she climbed out from under during the end of my 4th year with this.......and they're paying her $3000.00 for it, but they haven't paid me a dime in 7 months....never mind the fact that I can't even sit at my neice's fastpitch state tournament game without almost being in tears because I'm CLAPPING my hands and encouraging them. These people need to just live this way 24 hours....most couldn't make it, and forgive me for being sexist, especially if they're male....Ooh I feel a bit better now! hope you do too.
I firmly believe and it's been stated by at least one medical professional-that even after surgery you are never CURED from TOS.

[johannakat]

Yes, one of the first things dr Jordan told me was that i was going to have to limit my computer use to two hours a day FOREVER. This was before the first block, before the first botox, all in all about 4-5 months after the initial injury.

Also, in TOS surgical papers "success" is defined as reduction in symptoms of at least 50%. That is surely not cured. Not even close when you start where we are.


On the other hand, I do not think shoulder injuries adn knee injurues go away after surgery either. Many people who have joint issues that cause a shoulder, knee, hip, whatever to never be the way it was before. I know my knees will never be the same after one particular hike where we went for too hard, too long...my hubby's knees are weaker after that same hike, too. Of course, I can walk on them and all, it is just a problem when I do anything strenuous on them. But hey...TOS solved that problem

As I have only been on disability for about 6mo I am not too worried about my long term future YET...but I am switching from short to long term disability and there is a review to be had by the LT company, so perhaps I will become more jaded soon....'course i have dr jordan writing up all my paperwork, so keep your fingers crossed for me that I can stay out long enough to get what i need fixed before i go back in whatever limited capacity i am going to go.

[towelhorse]

i believe the reason that TOS can not be cured is because it is a set of symptoms, you cant cure symptoms. everything that i read convinces me that the root cause is scapular instability, the experts think this is a symptom but i know that this is the reason for
1) posture changes
2) heavy arm feeling
3) pec minor syndrome
4) shoulder pain, neck pain, thoracic spine pain
5) rib pain
6) discomfort when trying to sleep
7)headaches
and so on and so on
i am sure that if a person did not have a job which required holding their arms out in front of their body they would heal and recover back to normal .however if you are a motivated person or are working to a deadline you are most likely to continue through this stage and thats when the trouble starts. Many activities and in-activities of daily living cause the scapular instability to perpetuate. the experts see the scapular instability (it is in the article which you found frustrating) but they do nothing about it or worse still, they try and strengthen muscles which are neurologically compromised ( this was my therapy, it compromises the nerve even more so)

I bet London to a brick that within 5 years they will find that they have got it backwards. if I'm wrong then i'm a goose. Essentially everytime we use our affected arm we compromise the nerve which controls the muscle which stabilizes our shoulder, when the scapular muscles tire early the pec minor dominates and causes pec minor syndrome.
everytime we sleep we lay on the vulnerable and sensitive scapular nerve which ensures that it doesnt recover.. So they provide operations and therapy which does not address the root cause, only the symptoms and when we dont recover somehow it is all in our minds. my vent regards towelhorse

[mtnmom]

Great points, everyone! Sadly, as optomistic as I am, I'm realistic as well, and dont think there is a 100% cure out there for most people with TOS, including myself. I guess I'm thankful that (if I HAD to get TOS) I got vascular TOS and every symptom I have had is directly linked to an obvious problem that have all been confirmed with tests (MRI, Ultrasounds, Venograms) For me it was; massive arm swelling = blood clot. Still slightly swollen arm after surgery = a subclavian vein that is 'dead' and no longer working. I have never had to tell a doctor that I was in pain and have them respond that it was in my head. That would be beyond frustrating!

You all are rational people and you are very brave to live with the pain that you experiance everyday. Pain is your body telling you that something is wrong. Please dont let anyone tell you that what you physically feel is in your imagination!

[gibbrn]

.......gonna tell you anyway ha ha ha...

WE WRITE OUR OWN ARTICLE BASED ON OUR OWN CASES AND DO A RETROSPECTIVE LOOK AT TOS PATIENTS BASED ON OUR MEDICAL RECORDS AND SOME WELL FOUND STUDY FORMS..... AS TO HOW WE FEEL AND OUR PAIN SCALES NOW.......

WE REALLY COULD DO IT BUT IT WOULD HAVE TO BE LEGIT AND ALL THE NURSES COULD PUT OUR NAMES ON IT AND NAME ALL WHO GAVE DATA IF THEY SO CHOOSE.....OTHERWISE IS TOTALLY CONFIDENTIAL AND I HAVE NO PROBLEM COLLATING DATA ......WHAT THE HELL ELSE AM I DOING?????

SO WHAT YA THINK.....yes I was yelling to get my point across....

of course this is just a thought and would take a lot of work and much time...but I am soooooo in on it!!!
so we can by 1.type on injury....ie....rsi, injury, car accident, birth.....
2.surgery??? results if any......
3. american, canadian, european, japanese.......list goes on....right guys9not that this matters, is better acutually
4.physio? vs no physio...results....

has this got your brains going???? Cause we can soooooooooo do this....we may need some help from my doc pal DBF and also a statistician...need to see the cost on that baby!! may be steeep????? but we can manage somehow....apply for a grant of some kind to do the study so we get paid to do the work and also to pay the stats people......I am getting fired up you guys!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

love and hugs to ya'll.....
Victoria (oh and I am soooo not looking good in my bikini in L.A. !!!

[Jomar]

You're blowing my mind girl !