I have not been diagnosed with TOS yet but I have a strong belief that I have it for various reasons that I won't go into right now. Earlier this week after having a strange-looking dark blue vein appear on my left arm, which I've never had before, and searching and seeing that this is yet another symptom of TOS, I visited a vascular surgeon.

The doctor I saw was highly qualified and lists TOS as one of his areas of specialty, but he was very grouchy and didn't really seem to want to examine me. He did the pulse test and told me that my pulse was strong. Other than that all he said was that he doesn't think the vein is indicative of a serious problem, but he will give me an ultrasound to make sure. The ultrasound machine is booked until May 31, though.

My question is, has anyone else here visited doctors who were supposedly knowledgeable about TOS and told they didn't have it, but then were later diagnosed with it? I have made another appointment with a different doctor (one recommended here) on May 21 so I guess I'll just be wondering until then...

Thanks,

India

Yes I think quite a few have been that route- a dr says they know TOS but what they know is old or just incomplete - not to mention sometimes wrong!
Good for you to make a second opinion appt.

sometimes it will help to make a simple but complete list of symptoms and your history of those.
To take along for the doctor - if you can type it out and keep it brief they may absorb the info better.

I wish I would have done this - I always let the doc be the leader and they didn't get all my symptoms written down or they ignored the ones they didn't care to deal with.

A single vein showing up like that might even be a clot or something else - does it hurt and swell in the area?
my sis in law had a clot in her arm and my niece had one in her calf -

Did you find or useful sites and links thread in the stickys too?

Welcome and it's nice to meet you.

Have you had any xray or MRI of the Neck or spine to check those for a cause?
I'm assuming you are having neck, upper back , arm and hand pains?

How is your basic posture?
head aligned -not forward of the body, tilted or crooked shoulders, hips etc, forward rolled, hunched or slumped shoulders

If you want to post your specific symptoms we might be able to suggest some helpful things.

Thank you very much for the nice welcome! I will look at the stickies and I already appreciate all the helpful information here.

The vein in my arm is not swollen and does not hurt.

Yes, I have shoulder, upper back, neck, arm, chest and hand pain. It is worst in my arms and hands. It is bad when I sleep, and after I perform certain motions, including repetitively reaching above my chest level (something I do at work). Today I reached backwards with my left arm while stretching out my right arm and it was very painful. I also get "angina-like chest pain" periodically, but have tested negatively for angina.

I have terrible posture, with sloping shoulders that I often hunch forward. Also, I have a large chest and until recently carried two very heavy shoulder bags slung across my neck.

All of this pain started with an incident where I was flying, and I was a nervous flyer to begin with. (I also spent most of that day carrying the above two heavy shoulder bags.) After getting off the flight, both my arms went completely numb and I started getting a pulsing pain in my neck. I thought I was having a stroke so as a result I gave myself a panic attack. Then I had another incident that started with a similar pulsing pain in my neck, and then a pain shooting up my arm. I thought it was a heart attack. Both times I had testing and everything was fine, so now I have been labelled as suffering from panic attacks.

I have not yet had any MRIs or X-rays of my neck. My regular doctor wants me to wait a month while wearing sensible shoes and sleeping with a horseshoe pillow! He will then send me for an MRI if I am still in pain. I feel that I am having panic attacks because of the pain, not having pain because of the panic attacks, so I want to be proactive about things.

Thanks again for the lovely welcome.

one thing you can probably start doing is some gentle work on correcting your posture - that alone might be a big help. The bad shoulder postures close down the area where those very important nerves and blood supply flow thru.

a very simple one is to lay on the floor- or bed if you prefer- and just place your arms out straight or at a slight angle away from the body {as comfort allows}
then just relax with diaphragmatic breathing { low deep chest breaths with full exhale -not shallow upper chest breaths}
and lay there for 15-20 minutes
if you can do that a few times a day you may see some tension releasing
or if you can do that easily you can move up to laying on a rolled towel {lengthwise under the spine} so that shoulders can gently drop back more and the chest can open and release at the same time.

And a xray should show if any c spine cause or extra cervical ribs that could be the cause or a part of the cause.

the nerve that affects the ribcage can get irritated too and cause chest spams/pains.

You might pick up some books or videos on Alexander technique or other bodywork styles - i found quite a few at our local libraries- the videos are really helpful for really showing what they are talking about.

I'm so chatty today LOL

PS- If it is very uncomfortable can you ask for some gentle PT at a very qualified PT clinic?
I had 2 advanced PT that did very thorough exam/evaluations {better than my docs did}
But if you do PT don't let them rush you into anything that feels like it will cause pain>
Do you get delayed pain- hrs or a day after use?

hmmmm i think Shelley can comment on heavy bags and travelling!!!

I second Jo's reccomendations and also suggest Sharon Butlers TOS book. Jo suggested it to me and I have gotten good progress out of the exercises (though I will note that I am on my way to surgery in 2 weeks in spite of it).

www.selfcare4rsi.com

take care,
Johanna

PS I am feeling chatty today, too....