Anything and everything can happen internally and externally to TOSers.
Are bodies are the same
Even though the symptoms may change depending on the individual where the compression is and how it is treated.
Sorry, Better...I have to disagree with you that GOD can only change this.
Not GOD...
Just as TOS has nothing to do with thyroid, constipation or even lower body sciatica, leg stiffness, toe numbness (which a well know TOS surgeon believes).
How can that be?
We have a closed circuit, circulation in the human body.
The anatomy is controlled by the nervouse system and circulation.

Only us as informative researchers can help each other.
We are teaching the docs, the surgeons, the attorneys, our family and friends consistantly.
We are not in this as a game.
This is serious ****.
It is a life of pain, sorrow and can cause death.
Do you hear me?
We as most TOSers are searching out every aspect to help our chronic pain and hopefully in the fututre the medical field will come together.

In meantime we come together
To share our experiences, our reseach, our pain.

Regards
And live life to the fullest
Each and everyday through the pain.

I believe in us!

olecyn,

I have read your statement several times and cannot help but feel the need to congratulate you. You very clearly and concisely summed up my life at least and most of our lives in a few sentences. I think I will print this out and pin it to my wall. You're right this is serious ****! I only hope that physicians understand how serious it is. How much work we do to research our disorder. How much help we give each other here. I know I truly would be lost without all my friends and what I consider family here. So thank you for saying these very concise points!!!



You are a master of linguistic style!

Love and hugs,
Victoria

Hi everyone,

I would like to ask, for now, that statements about testing and dx only be posted on this thread.
Let's stay on topic "Definitive Tests to diagnose TOS...."

Lets avoid certain discussions because many of us have formed our own opinions and discussing it won't change anyones mind.

If any new members would like clarification on a test or topic here they may PM the poster that they have the question for.

Thank you very much.

PS-
I will do edits if I feel they are needed.

Like I said, it was my opinion and that of the medical profession. You can believe what you want, as can I.

I have better things to do like enjoy life then try to change thousands of years of medical practice and the way docs think.

To those who need medical tests done, get to a TOP tos doc and let them order the tests needed. It may cost less in travel and time then paying for the tests depending on what ins one has.

I won't reply to this thread again. Sorry it got off topic Jo55.

There is some valuable notations here on the forum regarding testing...
We have all had some mof the tests and some of us cannot even get ok's to get them done.

After 7 years I'm still asking you~all questions on testing.
My thread on Vascular and arterial testing.
I take that information and suggest it to the treating MD's even though I'm post surgery 2002.

Finding a FAB TOS doc is essential.
I just founf mine after all these years.
The BEST thing I agree with Grom is the PT.
The Edgelow program has sure helped me.
You can order it without seeing Peter but its up to YOU as a patient to do it daily, 4-6 times a day whatever it takes.
It's not a cure but relief and strengthening when our bodies come crashing down.

Tamara has pointed out in her post thread on all the tests to have done to rule out and rule in TOS.

Informative, supportive, intelligent peeps here that have been through it all.
I don't know what I'd do if I had not found this forum.

And I have to think about all the thousands who have TOS and don't know about it.

Cyn-Cyn

I agree with every thing you've posted here. I posted my "testing list" only because that's the topic here. And IF ONLY there WAS a BLOOD TEST that could say "positive - 80% neuro 20& vascular TOS 7 cm from the first rib!" Ha, ha, what a treat that would have been.

I just had my 5th set of EMGs / soma nerve testing. They are going to do my lower body & legs because my left foot is "dead gone" and my right is going, and the rheumy said it's "idopathic" - they can't explain it - BUT, he said, it's obviously got some connection to the TOS situation as my body circulation and systems are "blocked" like Cyndy was saying. This man runs the UCLA disability in patient program and pain control program. He is world renown.

So it gets confusing.

But I went almost TWO years with no testing, and despite my medical / legal knowledge, because my hand ortho specialist just kept saying "overuse" and nothing more, I took to the internet, found you guys, and we ALL chipped in to brainstorm "my" test list. (It's not mine! )

Now I do notice some things about my surgery, so I'm going to post a new post.

Love to you guys, and I totally agree with Better that finding a TOP DOC for TOS is job #1. I think I did talk about that in my post. But for someone out there like me, who is a neurogenic TOSer with no visible / discernible compressions and with RSD and supposedly whole body fibromyalgia - or according to Dr. B an unnamed rheumatological disease overlay, I push forward for testing just trying to make sure we are not overlooking an identifiable condition that may be mimicing the TOS or is along with the TOS.

As far as legal stuff, when I heard that now we need those home or ability studies in addition to our doc's report - for a strong 100% case - I merely want to share that with everyone so that they can take it to their attorney or court and ask if it's appropriate for them also. I don't want anyone not to get the most fair outcome of any cases due to TOS.

But it also doesn't mean that my word is correct! I could be wrong. It takes guts, and frankly more energy than I have, to stick my neck out and share what I've "heard" via the grapevine because then I am a target for a shoot-down - but the point is that we are ALL a TOS family, and I hope you'll forgive me if I ever have a wrong opinion.

sorry to write so much, but I've been unable to talk / write without bad pain for many months now, so I'm enjoying coming out of this period!!!

Hi Tam,
glad to see you're able to type n share your info again missed having your insightful posts!

Love and hugs,
Victoria

I'd like to add a test that they should come up with-

a test for pain levels!
that will be proof of the pain that is caused by the "invisible" injuries.

now that would be a big plus.
for so many conditions.