controversial...oy vay...it's not controversial to the three Denver docs who have devoted their entire professional lives to researching, documenting and performing surgeries almost daily on TOSers!!!

controversial...until you've got TOS and know it's real!

my heavens but I tire of the ignorant docs!

Hang in there Kelly...best thoughts to you...

Maybe if some of those Drs would read Sharon Butlers Book or something about fascia and how it can become sticky - sticking to all other tissues and spreading that way.
- they might see that it is actually quite logical.
Just hard to prove from a legal standpoint for comp and such...

Of course I'm sure they wouldn't read a lowly body workers book.

All --

That's why I put the "controversial" in quotes. I don't know about you all, but I kind of wait to see how long it takes for a doctor to get to the disputed", "controversial" bit . I use it, in part, to assess his/her understanding of what I'm going through.

At the same time, because surgery didn't help me, I'm open to finding out if something else or in addition is going on.

Kelly

How long have you had TOS?
I've had symptoms/problems for 13 years and after seeing countless doctors recieved a "probable" diagnosis of TOS 6 years ago. I'm dealing pretty well with the pain right now.

I think I've had TOS for about 10 years but only the last 3 have been unbearable. I had a horse fall on me 4 yrs ago exacerbating the problem.
I work for vascular surgeons and had been asking them for years if it could be TOS and they always said no, it was just Raynauds. That was until 8 months ago, I couldn't take the pain anymore and I asked our ultrasound tech to run a study just to ease my own mind and she freaked out at the results and went right to my bosses. (it was normal laying flat but when sitting up the subclavian artery occluded) They were so sorry for not believing me all these years!!! And I highly respect and regard my bosses, they are the best in their field but like alot of docs always checked my pulse with my arm in the wrong position. Thus not occluding the artery. But once I had ultrasound proof it was easy to replicate it. Now they bug me weekly as to when I'm having surgery!!!
My pain is about a 4 most days but when it's bad there are no words to explain it.
So I guess it depends on the individual has to how long you can endure the pain and getting the right diagnosis. For me it was years and alot of convincing.

I have had TOS just over 1 1/2 years, or longer? I think I was having a lot of unnoticed neck and back muscle spasms, and my neck had been able to crink in funny ways that would cause a lot of pain for a few years...but in April 2006 a yoga injury really set everything off and I started having a lot of pain and dysfunction in my arms.

Had rib resections in May and August of 2007, still hurt a lot, but functioning and improving. Always have to be careful. I have been off work since May and hoping to return early in 2008.

Of course, my diagnosis wasn't official till a few years ago.

I know what everyone is saying about TOS being 'controversial', it's one of those things that a medical professional either believes in or not, kinda like TMJ when it was a "new" thing. The best way TOS has been explained to me is that it is a diagnosis of exclusion - meaning when everything else has been excluded TOS is the likely cause...sounds funny but explains the many many tests that a TOSer goes through...

15 years this past August for severe symptoms. First suspected Dx was probably in 1993 or 1994.

Linda you are the first person that I have seen talking about eating there are many times I am choking on my own saliva as gross as that may sound to others here I gag to the poit of passing out!!! I am still the new kid on the block to TOS@ 3yrs and it has been a roller coaster the intrathecal pump has leveled me some and sure once they get me up to a theraputic level and I get out to Denver for surgery thing will get better.

My attitude NOW is that I can't think of life in terms of "what will happen in five years? Will I STILL be this sick? Who / how will I be cared for? What if I am homeless?"

That thinking will drive me crazy. (I've always been a big goal setter.)

So now, instead, I think:

Can I get in some low impact exercise this AM, this PM, or today?

How can I lower my pain today?

How is my diet / what am I putting in my body today?

What can I do to help my daughters (via phone, with advice or showing love), or for my friends, today?

If the answer to these questions are that I can't do anything today, just bed, just dealing with the high pain, then I accept that for that hour, 1/2 day increment, etc.

It's all about "quality of life" for this day, this hour.