[tshadow]

Along with the discussion on CDC and OSHA, I'd like to know WHY no doctor has gathered ALL of the TOSers in So CAl and done a sort of question and answer, and gather the answers, and write some sort of article on us. I mean, if we are that rare, then doesn't it make sense to go to where there is a glut of us (and there does seem to be a LOT in CA) and get some basic, common, facts about TOSers and stop the arguing that the medical community does sometimes about some of our more obscure symptoms. Like, we all get face pain - wait, I shouldn't say "all" because I don't know that - but in our groups, we talk about face pain, jaw pain, someone pull up our long list of symptoms (not the Top 5.) And we call it the Top 5 because there are some basic symptoms we ALL seem to have, and then those additional symptoms that many share and are identical, such as the twitching fingers on occasion. Or the RSD that so many of us develop.

Whenever I read those Net Med line things, I always find so much misinformation or failure to truly identify the pain and disability of neuro TOS. And it's not like I'm well enough to do this fight - I get so tired out after talking to CDC for an hour, or OSHA for an hour, getting nothing, and even the people I'm talking to are saying, "I don't know why we don't have stats on that, you're right." So let's talk to our docs out here in CA and see if any would be interested in doing an article using all of us that / who would volunteer. Maybe we could even start a list of questions ourselves, and put it into a first initial with number format, for privacy, and then start answering these in either a polling type method, or just a descriptive answer to each question...

What does anyone else think? I can think of some questions already, such as how many days does your TOS keep you from washing your hair, or engaging in walking or sports, and, are you diagnosed - how many doctors did it take to get a diagnosis, what tests did you have to take before you got a definitive diagnosis, what other illnesses came after the TOS? Describe RSD if you have it. I mean, wouldn't you all be interested to hear what people respond? And it's not a right or wrong answer - these are our true stories, our truth .

[freetofu]

I think research dollars tend to go either to a) life-threatening conditions, which are considered more important than things like TOS, or b) conditions for which pharmaceutical companies see potential profits.

I've run into this problem a lot in trying to learn about trigger points. The research is simply inadequate, and is likely to be so for the foreseeable future (though I think there are additional reasons in the case of trigger points).

[trixlynn]

I am in Canada, but I would be very interested in answering any questions, or helping a doctor with his/her research.
I agree that there is a lack of good information, on our symptomology and how to treat us efectivley.

[Jomar]

Originally Posted by freetofu

I think research dollars tend to go either to a) life-threatening conditions, which are considered more important than things like TOS, or b) conditions for which pharmaceutical companies see potential profits.

I've run into this problem a lot in trying to learn about trigger points. The research is simply inadequate, and is likely to be so for the foreseeable future (though I think there are additional reasons in the case of trigger points).

What are you trying to find out about trigger points?

Have you seen the trigger point section of links in this sticky thread post?
http://neurotalk.psychcentral.com/post388-1.html

There may even be more & newer ones as I haven't done a update search for quite a while.

[freetofu]

Jo*Mar

i've already been relatively thorough in doing my own research. I read about 2-300 pages of Travell and Simons (including the very strong TOS section), Bonnie Prudden's Myotherapy and Michael Margoles' Chronic Pain cover to cover, and the (excellent) chapter on Myofascial Pain Syndrome in Weiner's Pain Management, plus I've spent quite a bit of time going through Google Scholar just to see what the research says, such as it is. I've spent the last year or so experimenting with self-treatment, although I haven't yet tried having someone treat me for it. The vast majority of these materials consist of anecdotal evidence, i.e. the practitioner has been treating pain sufferers for 10 or 20 or 30 or 40 years, and this is what seems to work for her, with every writer having her own idiosyncratic preferences. The studies that have been done have been too few, too small, and insufficiently rigorous (although I recognize that it is more difficult to design a rigorous study for these types of treatment than it is for pills or injections; for example, there's really no true placebo). Basically what I want is more evidence about what works best.

BTW, I've been using this forum as a resource for about 3 years, although I never felt that I had anything to add until quite recently. But no, I hadn't noticed the trigger points sticky before.

[freetofu]

I thought I'd provide a couple of links regarding evidence (but I can't, so I'll just give titles). The most useful review I've found online is called "Myofascial trigger points: the current evidence," by Leesa K. Huguenin. It's not comprehensive, but still good. The section at the beginning showing poor reliability in identifying trigger points conflicts with other reviews, if I recall correctly, but everything else seemed more-or-less typical. I found "systematic review" to be a useful term in google scholar, and Travell and Simons covers much the same ground.

I also found information about what looks to be an intriguing new evidence-based trigger point book written by a pt, entitled "Myofascial Trigger Points: Pathophysiology and Evidence-Informed Diagnosis and Management" by Jan Dommerholt.

[freetofu]

Also, sorry for hijacking the thread, but I have one more thing to say: all these problems apply as well to standard physical therapy techniques, which is part of the reason you get sent by your doctor to a pt for "rang of motion" excercises that end up making you worse.

[Jomar]

I 'm not sure if this is what Tam is looking for but fits in with the topic of RSI and why it is not covered/studied more.
This is from Australia but the reasons fit world wide I'm sure.

[Why was the Australian RSI "epidemic" seen to disappear in the late 1980s?
Ann Thomson Director-
RSI & Overuse Injury Association of the ACT – Australia’s only remaining RSI support group]

http://74.125.155.132/search?q=cache...&ct=clnk&gl=us

-I copied this over to the correct thread -
http://neurotalk.psychcentral.com/sh...902#post608902

[tshadow]

This is off the topic of my post, but since we're talking about politics of injury, I can tell you what my experience in work comp was.

Workers' compensation laws were developed to take the place of the usual laws where if one were hurt by something at work, you would sue your employer under a negligence theory (negligent setting up of manufacturing machine, or maintenance of machines, as examples.) But what happened with the old system was that the injured person could wait up to five years to get to trial, and how were they to pay for their rent, etc., while waiting, and then, juries would be so mad that they would give millions in punitive damages, which could bankrupt the employers. So, the legislatures (whether US or another country) enacted these work comp laws, so that the injured worker could get "immediate" medical care, "immediate" salary replacement while they got better, and hopefully would get right back to work, whether at the same job, or one that fit the injury. If there was some permanent injury, but the person could still work, then they'd get a payment (one time) to cover the loss of being able to go out in the general marketplace. And it was a guess-timate of what the permanent disability amount would be, trying to be fair.

What has happened, at least in CA, is that we've had a glut of claims in the 80's, 90's, that were from "undocumented workers" who not only were illegal, but, there were NO medical records to show if the injury had been old (and there are many, many injuries that you cannot tell by xrays how old they are, and only a few which can show by some indications that maybe that they are old, but then it's an argument via physicians) so anyways, a LOT of money was paid out of the CA system to people who took the $100K checks and went back to their country (in my experience, every single one was Mexico) and then lived quite "large" on the one check for the rest of their life. They built houses, bought trucks for the family, and then, I found out on many occasions that they then went to Texas to a job and filed for the exact same injury. How do I know? Because the attorneys called me, as the insurance company runs a database with names, social security numbers, etc., that we match up to try to catch multi-filers.

Then in walks "us". The TOSers. With an injury that doesn't have a set test, which can't be "seen" unless our redness is "out" for that day or time...my redness now comes and goes, and certainly can't be told when to erupt! But the doctors and attorneys and the legislature is so jaded right now, it is just a "bad time" I think, politically, to have a work comp injury.

But my question is bigger than this. I want to know what OUR national statistics are, and why I can't get CDC or OSHA to find them for me. I know that the insurance companies keep records on stuff like this - as in the average cost of this injury, or that, etc. They plan everything based upon data and statistics. So it must be out there. I want to find these facts.

In closing, anyone who knows me knows that in my case load, there were probably 80 to 90 percent truthful, real, and often badly treated cases. The fraud cases were few, but when they did happen, it was really disgusting, especially because it hurts all of the legitimate injuries. So no one take offense to the above, as the offenders were actually such a small group, there were many real ones...

[freetofu]

(You might have noticed that I deleted my original reply. I just decided I wanted to think a little longer about what I wanted to say.)

Well, I understand that you are speaking from personal knowledge (I don't know what capacity you're covering these cases in), but I'll admit that I initially said, "uh-oh" when I started reading that, since I like to read a lot of political blogs, and, well, you know... I'll just say that I myself have worked illegally in other countries, and had operations paid for by the insurance with which I was provided - including surgery for pre-existing conditions - so I'm personally not quick to be judgmental. But fraud is always going to be there, and loopholes should be filled, of course, but I think you need to be very careful about connecting these two issues. And it does seem to me that there are a lot of people in America making a lot of money by denying health care to ill people - no fraud necessary.

Anyway, you've identified what makes TOS so problematic both in this thread and in the "Differing Opinions on SAME SITE" post. I happen to have some quotes making the same points, taken from the paper on the Edgelow protocol that Dr. Steven Feinberg used to have on his site (I emailed him and he sent me a copy): "The diagnosis and treatment of thoracic outlet syndrome (TOS) has evolved over many years surrounded by controversy and disagreement. In fact, even the existence of this syndrome as a true clinical entity has been questioned."..."Over the years TOS has taken on a negative connotation because of poor surgical results or because it has often been employed as a “wastebasket” term when the treating clinician is short on a diagnosis and unable to explain the patient’s complaints. This has resulted in much controversy and disagreement among professionals along with confusion and distrust among claims examiners and patients."

Also, as you can see by the book titles that I listed, I've ended up reading a lot about chronic pain because of my interest in trigger points (which Travell and Simon see as a possible cause of TOS; this is also covered more briefly in the popular "Trigger Point Therapy Workbook," which I've seen mentioned in this forum), and one thing I've seen is that chronic pain sufferers deal with a lot of the same struggles with insurance companies, friends who don't understand, etc. as TOS sufferers. Dr. Margoles talks about this a lot in his book (which you can find in google books; I apparently lucked into a dirt-cheap used copy a year ago, but it seems that this is not longer possible). There's also an article called "Clinic and Coutroom," which I believe covers the same sorts of problems, in Weiner's Pain Management (which seems to be generally available in medical libraries; in Google Books there's also an older edition called Pain Management: a Practical Guide for clinicians by Richard S. Weiner). Anyway, if you take a look in the neurotalk Chronic Pain forum, you'll see that people there are dealing with a lot of the same sorts of frustrations. TOS is not unique in this respect.