I have a question for those with TOS experience. I am newly diagnosed with TOS and am a little concerned about the type that I (may or may not) have. I have been on an exhausting road to a diagnosis with MRIs, physical therapy, and 1 million other things. It is seemingly agreed upon that I have TOS however my main complaint and my first symptom was cold hands and fingers while working.

Not just the sensation of cold, but physically cold to the touch. However, there is no discoloration and my hands are not turning white. Seems to affect primarily 4th and 5th finger on both hands. This has since evolved into more traditional symptoms that many of you describe. But I still get cold hands and fingers while working. No real other time except when maybe lifting something relatively heavy.

My concern and question is whether or not this is ATOS? my PT Dr. thinks that it could just be a neurological symptom and damaged nerves could be the culprit. I also get weird sweating in my hands and fingers for no apparent reason which seem to support the theory of weird things going on.

Wondering if I should be concerned? Would like to avoid any surgery for obvious reasons. But obviously don't want to roll the dice or take unnecessary gambles with something that could be far more serious.

Does anyone else get this as part of their symptoms? Should I look into getting any other tests? If so, who would I see? I assume, that having ATOS almost always means a rib resection?

[having ATOS almost always means a rib resection? ]


My thoughts on it..
There are differing amounts of severity for all types of TOS.
Some will have mild, moderate or severe symptoms, and sometimes it is not cut and dried as to which type a person may have.

Is, or was the therapist that you had one with advanced training or specialized with TOS type syndromes?

PTs w/advanced training and experience can be very helpful in locating what parts of the body might be causing problems.


And don't forget trigger points & myofascial adhesions can cause many pesky problems that can feel quite severe, but with proper tx can be resolved.

Does your neck/shoulders seem to be more tight than usual when the cold feeling happens?

Finding a expert/advanced PT, body worker, or even expert DC that does PT type modalities is my suggestion.

PT actually thinks it is neurogenic and not necessarily arterial. Something about the sympathetic nervous system acting screwy. They are a very big PT center and have treated TOS patients before. I wouldn't necessarily say that I could confidently pinpoint them to TOS specialists… But they seem pretty knowledgeable.

The coldness doesn't necessarily bother me, it's more annoying than anything. I do notice that when I relax and try to slow down my breathing that it dissipates. It is something I could most likely learn to live with, but I would just want to be sure I'm not overlooking or discounting something that could be potentially life-threatening. With the thrombosis or whatever, being the concern.

So with arterial TOS, I'm wondering what some of the other concerns or symptoms might be just so I can be prudent and careful not to ignore something that could be very serious. How can one decipher between traditional TOS and the more dangerous variety?

I'm with you in that I'm all about conservative treatments and avoiding surgery where at all possible. I am not convinced that my situation would improve by going under the knife. And I am able to notice improvement by stretching and or lifestyle changes. I guess I would just like to rule out anything really bad.

*Not that TOS on its own isn't that enough…

Is it wise to have the Doppler test just to rule out anything? Is it very expensive?

I don't think the doppler test costs have been mentioned here, and I haven't had one.

I guess go with what your dr suggests if you feel he/she is a good dr.

If sx get more severe or quite bothersome then most likely a good idea to do the test.
Especially if vascular sx appear.

I guess that's my question. What are some of the differences I should be aware of between the two. *Besides the cold hands. Can't seem to find anywhere that shows similarities and differences.

this chart might help-
http://tos-syndrome.com/newpage12.htm

and many more info sites in the useful sticky thread - if you haven't looked thru it yet
http://neurotalk.psychcentral.com/thread84-3.html

I was just cirous, i've. Been looking around on here for several says trying to explain my problems/symptoms.
See EMG dr Monday for the first time. I had 3 ROTATOR CUFF and biceps tendons surgery in the last 2 years on my right shoulder. By the way it still feels i'd say the 3rd surgery failed too.
But. This time i have all theze new symptoms i never had before.
One of the are severe cold hands. They get to cold they begein to ache and hurf between my tumb and index finger. Also, at the same time my neck is stiff and shoulder/ shoulder blade hurts... Any ideals??

I'm so sorry, I'm still getting used to this board, and I totally posted in the wrong place! I think I should have replied to the last message, not the first!

You know, you might have some (mild! if you Google these terms you will find lots of stories about really bad cases, which you do NOT seem to have!) RSD/CRPS); ATOS can trigger this. [To the person who can't even peel a cold orange, that also sounds a lot like how my RSD presents.]

One reason it's important to know if you have RSD/CRPS (in addition to the ATOS) is that I would be very reluctant to go for the TOS surgery if I had RSD or was disposed to it, b/c surgery can exacerbate RSD (if you have it), and severe RSD is simply terrible. Also, the sooner you treat RSD, the easier it is to get rid of it.

It's hard to get a good diagnosis on any of these conditions--even very good doctors may disagree with each other--but I would see multiple diagnosticians, to try to get a good handle on what your precise diagnoses are, what caused them, and what your plan forward is.

You said your PT mentioned " the sympathetic nervous system acting screwy" and that is very similar to how RSD/CRPS has been explained to me. (I also have neurogenic TOS, and that was described very differently.)

I bought a paraffin unit to dip my arms in when they get that "frostbite cold" feeling. Painkillers and sedatives sort of help. It definitely sucks.

I have the cold hand issue. Much testing of everykind. My right hand gets cold to the touch all the way up to my shoulder. It is least noticible when I am working on my pc. I call it mouse hand. But when I run or hike it is very noticible. It starts in my hand and moves up the longer I do the activity. My friends tease me and say it is my super power because I can keep a beer cold. My hand doesn't get white, but my fingers do get red or more purple

The nerve testing indicates a problem with the medial nerve (the one on the outside of the upper arm). Caused by compression of the nerve. TOS. Definitely not Reynauds.

Cause of TOS probably cervical dystonia (spelling?). My neck and shoulder muscles are very very tight. Like stone. Tests indicate that my muscles spasm all the time.

Treatment is botox into the scalenes and botox in other muscles around neck and shoulders.

The docs say surgery is a good option to open up the area the nerve and arteries travel to reduce compression. That should improve my symptoms.Not ready to have surgery. The botox helps and I was already doing it for migraines.

Doc thinks dystonia may actually be the cause of migraines too.

The good thing about botox is that it means I am not taking painkillers, etc all the time. The bad thing is each time I worry that they will hit a nerve. But botox has been a lifesaver. I used to have 13 migraines a month. Now I only have mild ones when the botox wears off. A few toxins in my system are nothing compared to the numerous pills I was taking on a regular basis before. Then I felt toxic.

do you guys scalenes upper trap area ever start to get really hot?