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...

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?

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?

I can understand your concern with clotting as it happened to me so I can talk from personal experience. TOS alone may not cause a clot but there may be other things that may affect it. I have a blood clotting genetic condition called factor v leiden which was not diagnosed until 2 years ago after a PE. It was due to my FVL combined with TOS that caused my clot.

I would imagine that unless you have other risk factors that is why your specialiest isn't concerned. Drink plenty of water and walk a little each day which will help if your blood was likely to clot. Also eat plenty of vitimin k rich foods which thin blood naturally.

Please try not to worry about the what if's as they only get you stressed but take each day as it comes.
I hope all goes well for you

Thanks, OzKira. Was your clotting "effort" related, or does it just happen because of the TOS/FVL combo? And I thought Vitamin K thickens the blood.

Nop anti vit K