Hey everyone. I went to get a second opinion about my TOS yesterday and had some additional testing done. The positional ultrasound of my veins showed that laying down they are perfectly fine, but when I just sit up (with my arms at my sides), very little blood gets through them. When I raise my arms to 90 degrees they are totally shut. A CT also showed that my arteries are starting to narrow at the thoracic outlet and dilate on the other side. The surgeon wasn't concerned about the veins and assured me I won't get a clot. He said I shouldn't pay attention to the tests, that is his job, and that my symptoms aren't worrisome enough (I have some hand swelling and small visible veins on my shoulder). He also said the artery damage isn't significant right now and that it is a slow degenerative process.

He sees a lot of patients for this and has done hundreds of surgeries. He also takes an individualized approach to surgery based on what each patient needs. I am seeing him in 6 weeks to follow up and if my symptoms are worse we can discuss surgery. I have bilateral TOS so I'll have to have 2 separate surgeries if I decide to do it!

I am totally terrified that I am definitely going to get a clot or develop and aneurysm, and personally I feel like my situation is urgent, but don't know what to do at this point. Do I get a third opinion, or try to stay calm and wait for the 6 week appointment? I mean regardless of what I do I will have to wait at least some length of time for the surgery. I am starting to feel totally hopeless and like a ticking time bomb. I just don't know what to do. I mean the fact that I will have to at some point have two invasive surgeries that require a long recovery process is scary enough, but the severity of my situation is more than I know how to handle.

from my experience, a compression like yours is not harmfull for the moment

I agree..not to get worked up. Got to your next test, and even have another consult about your situation. Cant be too many. If there is no concern of a clot, ask advise on non surgical treatements in your area. That is just my personal opinion.
"boytos from my experience, a compression like yours is not harmfull for the moment "
I am concerned about a comment like this one though....is that personal medical experience....or just an educated guess?
Take you time to read many posts and many stories here of people going through simular situations.

that it...

Hi,

This is worrisome to me since I have TOS and many nerve injuries along with frozen shoulders. What were your symptoms that led to thre artery issue?

Hopefully these will ease your mind a bit.

Some don't get any clots at all, just be aware of any symptoms of a clot.
Some have had major swelling of whole hand & arm and no clots.
Many people just have thinner skin so the veins & such just show more.
( If they are bulging then that would be different from just showing thru the skin)

Stress and worry will make you tense up and that stops/blocks the free movement of fluids in the body. This fluid movement is needed for cell cleansing /detoxing of the bad stuff to get it out of our bodies.

Whata re the symptoms of a clot caused by TOS? In shoulder area?

[What causes blood clots?

Blood clots form when there is damage to the lining of a blood vessel, either an artery or a vein. The damage may be obvious, such as a laceration, or may occur on the microscopic level. As well, blood will begin to clot if it stops moving and becomes stagnant.

Venous thrombosis or blood clots in a vein occur when a person becomes immobilized and muscles are not contracting to push blood back to the heart. This stagnant blood begins to form small clots along the lining walls of the vein that gradually grow to partially or completely occlude the vein. An analogy to this process is a slow moving river. Over time, weeds and algae start to accumulate along the banks of the river where the water flows more slowly. Gradually, as the weeds start to grow, they begin to invade the center of the river because they can withstand the pressure of the water.

symptoms-
What are the symptoms of blood clots?

Venous clots do not allow blood to return to the heart and symptoms occur because of this damming effect. Most often occurring in the legs or the arms, symptoms include:

* swelling,

* warmth,

* redness, and

* pain.

Arterial clots do not allow blood get to the affected area.

* Pain is the initial symptom of this ischemia, or oxygen deprivation due to loss of blood supply.

* Other symptoms depend upon the location of the clot, and often the effect will be a loss of function. Heart attack and stroke are self-explanatory.

* In an arm or leg, in addition to pain, the limb may appear white, and weakness, loss of sensation, or paralysis may occur.

* If the blood supply is lost to an area of the bowel, in addition to intense pain, there may be bloody diarrhea.
]
http://www.medicinenet.com/blood_clots/article.htm

Pixified-

I wouldn't stress about developing a clot, just be aware of the symptoms to watch for. I know this is easier said than done as I stressed a lot about it when I was first diagnosed with it, too. I was officially diagnosed with vascular TOS on my left side (non-operated side) two years ago but knew I had a problem since I went through TOS testing back in early 2004 for my right side. For me, my left arm turns grayish, the skin becomes quite cold and the whole arm becomes quite painful. The doctors documented a 25 degree difference between the two extremities when they were running tests convinced I had a blood clot during about 3-4 hours of vascular testing. They didn't find a clot but did document significant compression of the artery and vein even in the side position probably dur to my anatomy. I have a cervical rib on the left side.

I was concerned that increased pressure on my arms/shoulders from being forced to use crutches for 3+ months (two back-to-back ankle surgeries on same ankle) would increase my symptoms. So far, I'm on week 8 of 12 to possibly 16 weeks and no increased symptoms.

Just be aware of the symptoms to watch for. Watch what triggers your symptoms. Back in 2003/2004, pt aggravated my symptoms and I eventually opted for surgery. So far so goods regarding the right side.

Clots would 'normally' go with venous TOS, not arterial.

The bad news is, of course, stress seems to make our symptoms worse, so TRY not to worry (I know, easier said than done)