[heybro]

Whenever I talk to someone in the medical field, when they say the words thoracic outlet syndrome, they say them without confidence. Do you ever hear that?

They say "You have thoracic outlet syndrome" and it is like they are saying "You are going to give me 1,000 dollars" cause they say it so unsure of themselves.

And when I call to schedule PT appointments, they say, yes, that physical therapist knows about thoracic outlet syndrome. And the last 3 words of that sentence are shaky. It is like they are trying not to F up the pronunciation of a word. haha.

thanks!

[Limoges]

It's such a complex syndrome--with so many symptoms that vary not only from individual to individual, but even between one side to another--that it's very, very difficult to diagnose. I think a doctor who jumps in and immediately calls "TOS" is suspicious, because it is rarely an obvious diagnosis. This is why so few doctors deal with TOS, and do it well. As one surgeon has said, "the only thing that's predictable about TOS is it's unpredictability."

[LosingHope]

You are both right; I think most doctors know very little about TOS, if they've heard of it at all. After my cervical ribs were discovered and I started researching cervical ribs, I found several sites that mentioned TOS. As this was my introduction to TOS, I studied it fiercely so that I could talk to my doctor intelligently about it. I have had no fewer than three doctors say, almost verbatim, the information found on the first couple of websites that pop up when you google "thoracic outlet syndrome." I'm pretty sure they were googling it, too. ;-) And I have talked to several doctors (not as a patient, but in social situations) who freely admit they have never heard of it, some of whom become quite intrigued when I tell them what I know about it.

Since it's not really common, and it's often a diagnosis of exclusion (i.e. you rule out a zillion other things first, as there is no definitive "TOS test,") it's not something that is covered extensively in med school or even in Continuing Education courses. A doctor has to make a concentrated effort just to become educated about it, much less treat it. I will say that for all the nonsense I've endured for the last 3 years - I have learned to be my own patient advocate and take a far more active role in discussions, decisions and treatment plans. It is rare for a doctor to admit, in front of a patient, that he or she is largely ignorant of the subject at hand - they're trained not to; a doctor should always appear calm and confident for the benefit of the patient, after all. :-)

[heybro]

losing hope:

you said

"I have learned to be my own patient advocate and take a far more active role in discussions, decisions and treatment plans."

this is great BUT none of the doctors I talk to are open to a DISCUSSION. none of them are open to explore DECISIONS. none of them are open to talk about different TREATMENT PLANS.

IT SUCKS!

[chroma]

I haven't gotten good treatment plans from doctors either. I get them from PTs. If the PT doesn't work out, you try a different PT. At some point, if PT just isn't going to help you then you get the surgery followed by some "post-op PT" to help with recovery.

That's the basic algorithm we have right now and for the foreseeable future.

[Jomar]

I agree, advanced PT or expert chiros were the best help for me, luckily I improved when I found the good ones, and off work, so didn't need to do too much of the dr shuffle.

[jkl626]

Originally Posted by Jo*mar

I agree, advanced PT or expert chiros were the best help for me, luckily I improved when I found the good ones, and off work, so didn't need to do too much of the dr shuffle.

Heybro, have you checked out any of the PT's list that I posted? I think it is a good list, you have to look them up and call them to see if any of them know about TOS. Didnd't Dr. Molina have any recommendations?

It has taken me awhile to find the good ones-you have to be persistent and do alot of research

I had one Dr.,a nerophysiologist who took 4 months to get an appt. with, so by the time I saw him I alreday had 3 dr's tell me I had TOS. I swear he was googling it while I was sitting there and then proceeded to tell me things I knew far more than he did,and then told me it was so rare that I probably didnt have it. Suffice it to say I will not be going back to him

[heybro]

There is one person on the list that is close and I emailed but no response yet.

EVERY PT will say they "know" about TOS. The last one that knew about it, made me worse. They had me doing a stretch that involved crunching your neck forward in to your chest (probably the worse thing you can do for posture). UGH.

Dr. Molina would not even tell me the name of the muscles he wants to remove in my neck. I am assuming he means the scalene muscles. He said that if he told me the name it wouldn't matter because I wouldn't know what it meant anyway.

He said there is NO physical therapist. I asked who he would send me to after surgery? He said to just call the general line.

Seriously, dude?

He said scar tissue can be an issue but that his success rate is 100 percent.

I don't believe that.

Why don't they understand that just because something is RARE does not mean it does not exist? UGH.

I can look in the mirror and see my forward head posture. I can see my curved shoulders. If I had a dime for everyone that told me I have good posture. UGH.

[Holles]

He actually said you wouldn't understand? Pretty arrogant of him.

[heybro]

Originally Posted by Holles

He actually said you wouldn't understand? Pretty arrogant of him.

So I asked again and he said "scalene." Before that he just said he'd decompress the area. I had a funny feeling so I said, "you mean you take some stuff out, what?"

oh well. what a world, what a world.

i did just get a hold of a PT from jkl's list and man oh man, she sounds good! she uses words that people been using here (joint mobilization, etc.)