Howdy All,

I've been dying to share a tiny joy of mine with all of you here. One of the respectable Japanese medical journals will dedicate entire journal to TOS !
http://www.medicalview.co.jp/catalog...3-07-08-0.html
Sorry, it's all in Japanese and you might only see a bunch of symbols
But you can find the abbreviation "TOS" appeared on the page.

It hasn't been published yet (will be published on the 18th) and might not contain eye-opening findings, though this is a huge progress for TOSers in Japan and means a lot to us.

I've never, ever, forgotten the day I was told "TOS is bogus" by one doctor 8 years ago. He was looking at my completely swollen, discolored, ice-cold left arm and hand and made this nice remark
I'll slap across his face with the journal in my dream in the night of the 18th. Ha!

Yasuko

yasuko-san,

thank you for sharing your wonderful news with us! i hope that this marks a big increase in awareness in the medical community in japan, especially among those treating TOS patients.

i think you should have hit that one doc with your good hand, myself...

perhaps he will find a copy of the journal in his mailbox. yes, that's probably the better way to go, now that i think about it!... and if he were my doc, i wouldn't be able to resist putting a note in there, something along the lines of "read this and please try to remember that you can't save your **** and your face at the same time, so get with the program, dr. X! ... PS there'll be a quiz later..."

unfortunately no matter what language we speak or what country we pledge allegiance to, i don't think there is a TOS'er among us who doesn't know what it feels like NOT to be believed, yasuko-san, even in the middle of our most glaring symptoms like you said. talk about making a bad situation worse!

and it does such a disservice to the suffering patient, in my view anyhow. we don't really care about the stupid controversy in medicine, after all. WE know we have TOS, we're experts from the inside out. my case is like yours, too, in that i have objective, visible symptoms of horrific nerve compression and other things going on in there... and yet it still took years and years to get a proper clinical diagnosis (and i won't tell you how many shrink referrals along the way, because "the pain must be all in your head").

did they think i was "making up" the hand atrophy too? hmphfff....stupidhead doctors....so smart and yet so ignorant at the same time...can never, ever admit they're wrong about a goddamned thing, either....they are freaks!!

well, anyway, i hope the publication of this journal is the start of many in your part of the world, yasuko, and that it opens up people's minds as well as their eyes and their hearts to TOS and the study and treatment of it, starting with the way the TOS patient is cared for in the doctor's office.

it's very validating when something like this happens and i share in your joy. this is a victory for all of us! so yay, us! and thanks again for posting this.

sorosoro shitsurei shimasu.

alison-san

yasuko
Thank you for sharing.It feels so wonderful to have our thoughts and problems validated.
I can only imagine in a different language and culture how difficult it is to have a compasionate understanding doctor.
Wonderful research,
Great to have you post
Di

Hi you all,

I'm now just hoping every single one of The Japanese Orthopaedic Association becomes aware of TOS and stop hurting and poking TOS patients (BTW, TOS is usually dealt by orthopaedic surgeons here).

If major, prominent journals like Journal of the AAOS or Journal of the Vascular Surgery or even JAMA start including much more researches on TOS, the awareness will spread instantly and globally.

I wonder what I/We can do to increase TOS awareness...

Yasuko
P.S. Alison, where did you learn your Japanese? You're living in LA or SF

UCLA ni nihongo no benkyo o shimashita...

gomen nasai, yasuko-san; i know i massacred that sentence! you can probably tell just from that how long ago it was that i studied japanese, at least 25 years ago now, and then only for 1 year. i was a linguistics major and we were required to take at least one non-indo/european language in order to graduate.

i always wished that i had kept it up and/or taken it further. i did get to spend a couple/few weeks in your lovely country once when i went on tour with the rock band, toto, in the early '80's (i was dating the bass player at the time, he's one of the flying porcaro bros. hahaha). but it was so cool when i got david paich to say "ogenki desu, ka?" onstage at the budokan (sp) theatre in tokyo and 11,000 screaming japanese fans immediately jumped to their feet. that band was very popular in japan in those days; still is, if i'm not mistaken! they knew every word of every song that group sang and to have an american address them in japanese, even saying just such a few words (badly mispronounced, too, i might add, yasuko!), well they clearly LOVED it and were so thrilled by it. i will never forget that!

nowadays, if i can order sushi in your language, i'm doing good, yasuko, but some day i'd like to learn more japanese. it is one of the best ways i know to learn about another culture. which is why i chose japanese to study in the first place! i am fascinated by all things japanese. just discovered a place in LA that does "body sushi," now i just need to find someone with a job to take me out to eat there because i would truly love to have that experience! but i have TOS and i can't work right now, yasuko, so the price is a little bit steep for me... (shelley, i know you're reading this, google it, babe)

your desire to spread the word about TOS is wonderful i think. maybe you could start small, and by posting a notice with your doctor's permission, of course, in his or her offices, begin a face-to-face support group for fellow TOS patients to meet say, once a week in the evenings after work, or even on the weekend? then you guys could kick around ideas just like that one as to how to be most effective within your neighborhoods and/or community in terms of spreading awareness, in addition to exchanging information about who is seeing whom for massage, who's found a great new bodyworker or doc or diagnostic procedure, etc. and just the plain emotional and social support you get from a group like that gets people to open up and start talking; awareness flows from that i believe, too. (you may already be a part of a support group, yasuko, i'm just throwing it out there...) your doc may even surprise you by offering the use of his or her suite in the off-hours for just such a purpose. but a living room will do, any small space or even a park if the weather will accommodate. these things usually start out tiny and build from there.

hey, i wish i did live in SF. my japanese would be a better, yasuko, for one thing!... and i'd be able to see peter edgelow, doc ellis, get dr. werner's 3-D MRI, be part of the berkeley rsi group (larsi has lost its venue), go to stanford and learn how to neuromodulate my pain brain's wavelengths with the fMRI study going on there - all kinds of things - it's a TOS-friendly environment up there in northern CA! but it didn't get that way by itself, did it? it takes one person with a mission and a drive to get it started. someone with the personality of a TOS'er but without the dang sx! that's who you want as your fearless leader, friends!

maybe you can be that person to put a fire in someone's belly, yasuko. now, i know you have TOS and therefore simply cannot do all the work alone. you must not. but i admire your spirit so much. and the publication of the journal is such a positive sign for change. i so agree with you there. it is something not only to celebrate, but to build from, perhaps. it is a sign that the time is right in japan, at long last! for as strict as the guidelines are which govern publication in western medical journals, i am certain that they are doubly so for publications such as the one you brought to our attention here, yasuko-san. the wheels of justice turn very slowly when it comes to TOS and we don't understand why. but turn they do! at long last, movement - right?

i wish you all the best and i hope you stay close to the forum and let us know how you are doing because we love having you share with us, so much.

doomo arigatoo gozaimasu.

(and where did you learn your english, by the way? which is SO much better than my japanese, i might add...)

alison

"i did get to spend a couple/few weeks in your lovely country once when i went on tour with the rock band, toto, in the early '80's (i was dating the bass player at the time, he's one of the flying porcaro bros. hahaha)."

Holy cow!! I loved that band! Yes. They were really famous back in the 80's. I think I was in a junior high at that time (gotta e-mail my friends about you). No wonder why you speak my language. UCLA must have had great language courses

As for putting a fire in someone's belly stuff, I totally gave up on "this project" year ago. Once I thought about forming a self-help group or something like that here, but found out other TOS patients had no intention to get involved and were somehow way too submissive than patients with any other diseases . I don't know that's their nature or TOS has made them that way (Me? No way Jose).
And medical community here is very closed. Just like a secret society (sounds like Dan Brown) and especially docs don't even know how to communicate with regular people. I couldn't expect any help or advice from the communicationally-challenged people. So I thought "forget it! I have my own life to live".

Well, enough about my almost-anger-feelings.

Alison, and others, don't try "body sushi". You'll definitely get food poisoning My mom (ex. midwife) told me, "Food poisoning from seafoods are the worst". She didn't allow us to have sashimi and related food between June and September when I was small.

Stay away from troubles (lol).

Y
P.S. I had to take useless, time-wasting English class for 6 years during Junior and high school years just because that was a requirement. I went school in KCMO right before I turned 26. Spent 2 years there, came back here, worked for awhile, and got TOS. Life is full of surprises and ironies and s**t (pardon my Japanese). English and TOS have helped me to make ends meat now. I've somehow built up medical knowledge and both English and Japanese med terms along the way, and am using them in my current job as a med translator. (mostly for New Drug and medical device Application) God works in mysterious ways?!

Can u translate this journal in English?
Western medicine needs this journal.

UCLA, Denver docs et all, here we come!

Hi !!

Long time no hear!! Hope all is well in your world of tos! Sooooo glad to see the journal and I hope you can roll it up and smack some people with it!!
It may just wake them up!

Talk soon....oh and would love to know whats up with the info in the Journal! If it is published would it not have to be put in English as well for all other English speaking colleges???? I would think so....I hope that knowladge is shared this way!

Take care....thinking of you and hoping you are well,
Victoria

Hi again,

Victoria, how have you been? How's your conditions ?
Olecyn, to be honest, it's difficult for me to translate all articles into English because of its amount and copyright stuff.
Instead, I translated titles of the articles below (Authors' names not
included). You might be able to get some ideas from them. If you and your docs still need some of the articles translated into English, let me know at that time. I'll contact the authors and the publisher for their permission. But please don't expect too much. They might refuse my request.

Topics: Diagnosis and treatment of Thoracic Outlet Syndrome (TOS)
*Introduction
*Anatomies of thoracic outlet area –the relationship between upper plexus, subclavian artery and vein, and musculoskeletal system-
*Causal factors and types of TOS
*Diagnosing TOS by symptoms, physical findings, and brachial plexus block; from a spine surgeon’s point of view
*Auxiliary diagnostic method for TOS- hyperabduction tests and diagnostic imagings
*Diagnosing TOS using Somatosensory Evoked Potentials
*Conservative treatment for TOS
*Physical therapy for TOS
*Surgical treatment for TOS 1
*Surgical treatment for TOS 2
*Diseases having similar symptoms to and should be differentiated from TOS: Cervical disease and others
*Diseases having similar symptoms to and should be differentiated from TOS: Neuropathy showing similar symptoms to TOS

I'm not sure I translated correctly but it should be OK...I hope...

Gotta work before my dinner !

Y

How about if we find a publisher that will/can translate into other languages for inter national purposes?
You go girl...so happy to see this.
There r several Neurology magazines out there in the US
Gotta start advertising and sending in articles.