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 can't tolerate anything cold. If I try to peel an orange or any fruit I have to stop and run my hands over warm water. They feel like they have frostbite they get so cold.

renaud syndrome ?

My cold hands and fingers are due to vaso-spasms. I have moderate compression of the artery when my arms are placed in hyper-abducted positions, but this in no way means I have ATOS. People in the non-symptomatic population can and do get compression as well.

The nerves are sending the signals for cold and for a long period of time I had a redish/blue discoloration as well. Since manual therapy, the discoloration has disappeared, but I'll still get cold hand and fingers but not as frequently.

Hey,

I have had a doppler. They use a wand to the wrist pulse. beep... beep.. beep. raise my arm above my shoulder. be.... no more beeping...
No pain involved with that test...

I do have to keep my arms warm, even in the summertime, down to my hands and fingers. Usually a light sweater, with longer sleeves will do.

Fleece blankets are wonderful, for my cold symptoms.

I own several versions of arm socks. They're wonderful.

I thinking about ordering these from Harriett Carter. Nose-picker arthritis gloves.

http://www.harrietcarter.com/health-...hritis-gloves/

As long as I keep my arms warm, I don't need pain pills. So I keep 'em warm...

When I use my arms a lot, like in the garden, they get cold quick. I have to wear a heavy material, hoodie-type jacket or flannel shirts, so I can continue working in the garden. You have to use your arms a lot with gardening. Just the way it tis.

Sometimes a hot shower will help warm them up. Most the time it takes the LED and infrared light therapy pads for me.

I used to use a heating pad... wore two out. Knowing that heat caused swelling on a microscopic basic, the heathing pad was very helpful at that moment. I wasn't aware of the LED and infrared pads and their effect.

I understood my good Dr. Atasoy to say the coldness was a nerve component, even though I have vascular/arterial TOS too.

I have found good advice on this site. "Palms up!"

Yeah, it makes a differnce in the pain, tingling and coldness.

Don't bend your arms at the elbows for a long period of time or rest your chin on your bended wrists. Can't tolerate that...

Arterial TOS don't mean automatic rib resection.

You may want to read about collateral blood supply that can happen after prolonged blood restrictions.

It's no fun, but understanding and working around the effects of TOS help us get through the tasks at hand.

keep asking questions...

no question is too silly...

you're not alone here...