Well, this doctor's opinion of me having TOS is that it's just a "notion" that the physical therapist has. As for wanting info from me, he knows I have a degree in nursing and that I've done some research on the subject. He admits he doesn't know exactly what is wrong with me. While it may not be the norm, maybe we can finally make some progress.

At one point, I thought I might have TOS. I did the test where you take your pulse when your arm is down, and then take it when your arm is up in the air. Neither I nor my husband could even find a pulse when it was up in the air. I also had visually obvious circulatory insufficiency to my hand (mottled), hand always cold, easily spasmed, sensitized, and spasms so bad on that side of the neck and shoulder that I would get headaches and visually obvious atrophy. My neurologist moved my arm into the air and said after about 2 seconds, "Your pulse is fine. You definitely don't have TOS". She was right. I asked her if there were tests that could confirm it, and she said yes but suggested I save my $$. I will ask her in 3 months when I see her for you. Can you work up a sweat daily doing aerobics of some kind? That would go a ways toward delaying problems. Do you have health insurance? If I were you, I would want to go to as many bulletin boards as possible asking how TOS is diagnosed, because my neurologist is usually right, as she was in my case. You wouldn't want a pinched nerve to become damaged because you assumed that it was TOS if it isn't, for example.
Good luck,
Jane

It looks like KLS had many imaging tests - I don't know if they imaged the C spine for sure - but that should be one of the first things to check I would think.
The physiatrist ordered MRI & xrays of T & C spine for me - to be sure C spine is not causing the arm problems.

Question -
I guess this is one thing I'm not 100 sure of -
if you don't have vascular compressions - would you still lose your pulse in the arm? if you have nerve compression only??

Yes, they imaged the C-spine (twice) and no problems were detected there either.

I am confused.

I have TOS. No question. But, I do not have any reaction to the holding your arm in the air thing - I have a pulse when my arm is in the air. I can also do the test where you open and close your hands over and over.

So just because these two tests are not reactive in me, is everyone saying then that the person doesn't have TOS?

I am confused by these postings...is anyone else?

ALso, as far as traveling to Denver:

If one has a good work comp attorney and local primary doctor, you can set up the foundation that for diagnosis you need to travel to Denver to get your diagnosis, surgical consult and even surgery - all paid for by work comp. There are people here including myself who had it done this way.

The first steps are getting a good attorney who deals with upper extremity repetitive injuries - you mentioned TTD checks so I'm assuming you've filed a work comp claim -

and we have a list of good TOS docs, Denver is not the only choice. It became the only choice for me because no one was able to diagnose me, I went to 10 or 12 (can't remember now) very good doctors and they all said that it could be TOS they just didn't know for sure. PT was failing. So there are procedures that the doctors can follow in work comp to set a foundation for a person to ask for and get a consult from an expert out of town or out of state.

If someone doesn't have any insurance or work comp, there are charitable organizations such as AngelsWings who, if you post here, will usually answer, or you can do an advanced search.

As for flying to Denver, if you make a post that you need help on flights for Denver there are people here who can PM you on services that are charitable and I believe free.

As for the doctors, if you call to arrange the consult and explain that you are doing it on your cash only, and that you are financially strapped, the doctors in Denver (and the others we've listed) are very compassionate and I know some have charged nothing and others have charged very little. If they know you're flying in and out in one day, you send them all of your medical records (on this injury) ahead of time, and they may say they are going to do an MRI or an EMG while you're there, and that they will seek payment through your work comp only, and they get all of that done while you're there that one day.

So this is how some of us have gotten our diagnoses. And TOS includes all sorts of diagnoses - brachial plexus neuritis, and so on...

I don't know where you live, but the first step would be posting the general area and asking for the top docs in your area, and making sure you have hired a GREAT attorney for what lies ahead. I had to bring 3 hearings to get court orders to get my treatments and needs.

don't give up, keep on trying.

Tamara, i am as confused too. I have never lost my pulse, in any position, and while I can't do the open and close your hand thing, there are other "classic" TOS signs I don't have either.

Thanks for the info!!! I'm going to definitely discuss this with my attorney! Right now he's telling me that because of TN law I'm not entitled to see another doctor at this point but maybe since my doctor is being pushed towards MMI that may be possible in the very near future to see someone else.

From all I've read, I don't think TOS can be diagnosed without taking into consideration all symptoms and ruling out everything else. Just because you don't have positive reactions to just those two tests, I wouldn't think that would mean a negative diagnosis of TOS, it's the BIG picture that counts. It's also my understanding that TOS encompasses compression in several places and the symptoms would depend on exactly where the compression is and the severity of the compression....ie.....how much of the nerve or blood vessel is being pinched, how long it's been going on, the extent of permanent damage. But then by no means am I doctor and I'm fairly new to all this so that's just my thoughts on the subject.

Quote:

Originally Posted by Jo55 Question - I guess this is one thing I'm not 100 sure of - if you don't have vascular compressions - would you still lose your pulse in the arm? if you have nerve compression only??

I was just wondering because of what gizmogirl said.
From all I've read loss of pulse can be an indicator - but doesn't prove or disprove TOS all by itself.

[At one point, I thought I might have TOS. I did the test where you take your pulse when your arm is down, and then take it when your arm is up in the air. Neither I nor my husband could even find a pulse when it was up in the air. I also had visually obvious circulatory insufficiency to my hand (mottled), hand always cold, easily spasmed, sensitized, and spasms so bad on that side of the neck and shoulder that I would get headaches and visually obvious atrophy. My neurologist moved my arm into the air and said after about 2 seconds, "Your pulse is fine. You definitely don't have TOS". She was right. I asked her if there were tests that could confirm it, and she said yes but suggested I save my $$]