Venous thoracic outlet syndrome - anyone avoided surgery?
 

Hi, I am new here. I was recently diagnosed with venous TOS.
I developed TOS after a swimming injury which happened after some hard workouts using paddles and doing a lot of back stroke. I was also an amateur violinist so that probably contributed. I had not been swimming like that for long - just a few months, but I am small and must have pushed it too much.
I do know that I had a clot in my subclavian/cephalic area which is now chronic. I have some compression - my veins on my left side are prominent, you can see them but they don't protrude. Swelling has gone down. My symptoms are slight numbness in my left arm and pain. I don't swim or play violin any more. I was running but that bothers me so I want to get my symptoms under control before exercising again.
I have just started on this journey but am not inclined to do the surgery at least not right away. I'm trying chiropractic and deep tissue massage and get relief. It's pretty amazing - I can feel warmth coming back to my left arm.
Anyway, I am wondering if anyone has successfully avoided the surgery.
And glad I found this forum. It's so hard to find information on this! I'll probably be reading every post in the next few days...
Thanks!

I did for 45 years, it was not a piece of cake, but only one Dr recommended surgery and I would have been his first rib removal, no thanks.

But I did have surgery in St Louis last year, recovery was hard, but I am very pleased with my results.

Regis

Saracb
 

Patient's with Venous TOS/Paget-Schrotter do have surgery to remove the clot and beyond such as removing ribs to create space if there is extra ribs. It is a radical procedure with 3-5 days IH, 5 days close post op and up to a year recovery depending on the surgical decision. However, if your condition is due solely to clotting I have been reading more and more where the conservative way to go is just removing the clot. Patient's have good and bad outcomes with rib removal surgery. It can be a crap shoot to say the least. Read up as much as you can and educate yourself who to provide you the best outcome.

Rib removal
 

I had the clot removed and the first rib removed later in decompression surgery. While it's true that a person with VTOS could have an extra rib, that is usually not the case. VTOS is a different type of surgery than the surgery for NTOS, so unless a person has a diagnosis of both, it's unlikely the prognosis would be the same. The compression sites in the body aren't necessarily the same either. Plus each TOS individual is different. I see no harm in researching the rib removal surgery even if you ultimately decide against it. What do you have to lose?

Thanks for the replies.
I do not have an extra rib (fortunately or unfortunately) and my clot is chronic. I have had several ultrasounds and the general opinion is that the clot is now permanent. I am not sure how much it is reducing blood flow vs. how much the TOS is reducing the blood flow. I can say that after deep tissue massage or acupuncture I can feel a release. So I am inclined to give these types of things a chance before doing the surgery. I'm looking for a doctor who won't push the surgery on me - the one I currently have is pro surgery and I'm not ready to go there yet.
Thanks again - I'm so glad to have found this forum as information on TOS is lacking.

Was your clot in the subclavian vein near the clavicle and first rib? Did the technician doing your ultrasound know this? I've heard that ultrasounds can miss a clot, especially in that area since it's blocked by a bone. I'm wondering if your clot was in an area that was more visible or if you went to a specialized technician that could maneuver to see it.

Perhaps it sometimes takes this long, but the recovery from a first rib resection for VTos cases is often much faster. In my case, I was in the hospital for 2 nights and had no close post op. I was off pain killers in less than a week and I feel pretty much fully recovered at 2 months. I was running after a month. I'm supposed to avoid lifting heavy things until the 3 month point. Otherwise, I would start now. My surgeon says that my recovery is very fast, but he often sees fast recoveries in cases like mine.

If you've got a good surgeon, the procedure isn't that scary. I was terrified, but I shouldn't have been.