Hello all. I have recently been tentatively diagnosed with bilateral TOS during a difficult pregnancy. I have nerve, arterial, and venous symptoms but Doppler ultrasounds show no arterial or venous clots. Do any of you have venous symptoms but do not have or never have had a clot? I have mild swelling of the left wrist/hand/fingers and visible veins over my right shoulder that get more prominent with activity. My vascular surgeon pretty much says I don't have a clot and to stop worrying and that venous symptoms don't necessarily mean that I have constant compression of the subclavian veins. However, he has ordered an MRV to ease my mind.

What are your experiences with TOS and venous symptoms? And does anyone else get dizzy when raising their arms above shoulder height?

You don't always end up with clots, many go for years with testing, diagnosis & treatment and no clot happens, just something to be aware of- the possibility.

You're pregnant now? How far along?
Possibly the extra fluids and water retention during pregnancy are are part of the cause.
The body tissues loosen & expand during this time so maybe after the baby is born things will go back to normal?

What other symptoms are you having?
pain, tingling in the little finger/ring finger, other?

I did have dizziness but not related to arm position.

my md believes i have venous tos : my symptoms are as follows when my arm is lower then my heart level it will turn blue/purple with bright pink spots , my fingers, hand are numb and my arm feels like bugs are crawling up it , my hand will also swell , sore wrist , elbow , and scapula pain , i will also get head aches not bad thou and severe pain when i get cold anything colder then room temp . hope this helps

Unfortunately I'm over a month postpartum and symptoms are even worse. Caring for an infant involves A LOT of arm work, more than I've ever had to do before! I get tingling, burning, and sharp pain in my arms as well. I also feel like someone has taken a baseball bat to my collarbones. Do you have venous symptoms, Jo*mar? Have you ever had surgery?

I have some arterial, some pec minor & myofascial sx - fairly mild now after being off work with self care & chiro regularly.
No surgery - lifestyle/job changes, expert DC & PTs, whole body awareness, posture, etc- that sort of thing helped for me.

Your symptoms do seem like venous for sure, and probably some of the others.

Have you had any expert PT comprehensive evaluations (can take about an hour+/-) to assess body/posture and if any therapeutic modalities might help?


To tell the truth from reading the forum over the years, it seems like Drs/surgeons rarely do any comprehensive hands on testing & evaluation/assessment of posture and body....
Maybe only a few of the super top TOS guys do that.

None of the regular MDs I saw did much hands on at all, not compared to the advanced PT & the DC I saw. Of course they were only focused on my specific places of pain at the time - hands , wrist, elbows, neck & shoulder later on.

Of course Mds do not study the body & structures as a whole as many hours as the others.

Be sure to ask for help with the baby or housework and as much help as you can get. Babies are very hand/arm/lifting intensive...
Use pillows to help with propping & holding the baby on your lap for feeding.

I'm pretty new to TOS lingo, what is a DC? I'm going to a PT in the next few weeks. I tried one before but he pushed me too hard with exercises and made things so much worse he refused to see me again for fear he would do more damage than good. I'm hoping this new guy will help. I'm also going to see a physiatrist on Thursday who the first PT recommended because she looks at the whole body. I'm hoping between the two of these physicians that I will get at least some help.

As far as caring for the baby, I'm trying as many modifications and getting as much help as possible, but its still very physically demanding and she's only about 10 pounds right now!

What kind of work did you do before? I'm assuming it was something that made your sx worse.

Oh sorry, DC is short for chiropractor. I usually type chiro LOL, but multi tasking so abbreviated it even more.

I did assembly work 10 hr days -15 yrs, had a break in the middle of that time to stay home w/kids.
They streamlined the assembly production area - good for business & profits but unfortunately worse for many of the workers that had been there many years.
Aging work force + increased physical demands + repetition + speed = injuries.

Hopefully any really good PT will know that pain & symptoms must be reduced with passive modalities -before any active input on your part.

Hello My husband had TOS and Snapping scapula, they removed part of his scapula however we deal with The TOS using Hyperbaric Oxygen THerapy
*edit*

Hi

So sorry you are having problems.

It's a good place to find.

There's lots of friendly people here who understand what you're going through.

Keep us posted as you go along.