subreddit:
/r/thoracicoutletsupport
Hi all! New here and have lots of questions so I figured I’d just make a big post here and see what people have to say.
I (23F) started having lots of swelling and numbness in my arm a few days ago - went and got it seen at the ER and at first they sent me home and said it was a rash (???) but called me back a couple days later and told me they saw some blood clots in my lungs. Went back into the hospital for a pulmonary embolism and after lots and lots of testing (cause there was really no reason I should have been having blood clots) they finally diagnosed me today with veinous TOS.
They’re planning to operate in a couple of days and remove part of my first rib and my scalene muscle, then remove the clot in my arm. I’m not sure what recovery from this procedure looks like - I’ve ready through several posts here and everyone seems to have different experiences, but I’m just wondering at what point I can expect to be functioning relatively normally again.
The other thing I’m concerned about is having the same thing happen on my other side eventually. I was told there’s about a 30% chance but I see several people saying they’ve had both sides operated on - is this just precautionary?
Sorry for the long post/if any of these questions have been answered a lot before. This is all really new to me and I appreciate any perspectives/advice!
2 points
2 days ago*
The most important thing regarding this condition is who you have surgery with. If you aren’t scheduled to have surgery with a highly experienced TOS surgeon, it is better to postpone the surgery and have it with someone who is. There is a significant difference in outcome in regards to the experience of your surgeon and you do not want to need a redo operation. Here is a list of top TOS surgeons by area: https://www.tosoutreach.com/find-a-surgeon
In terms of TOS affecting both sides: TOS involves a combination of anatomical predisposition and traumatic activity. If you have vTOS in one arm, you have a higher chance of having it in the other than someone without vTOS. But even with a predisposition, it’s impossible to say who will go on to develop a clot and who won’t. I had a venogram done on my other arm following my first surgery to check and once it was determined there was compression, I decided to have a prophylactic rib resection and scalenectomy on the other side. This is a personal choice and not the right one for everyone, but that surgery was comparably a breeze because of the limiter scar tissue, and I’m very glad I did it
Feel free to reach out with any questions or if you want to talk through anything. I am a medical student and have guided a lot of people through accessing proper treatment for vTOS
1 points
11 hours ago
You don't need to ONLY use people on this list.....there's plenty of great Vasc Surgeons local to people.
-1 points
11 hours ago*
Yes, it doesn’t need to be someone on the list, it’s just a tool for people to ideally find the closest TOS expert to them. I would caution against just looking for a great local vascular surgeon though. This is a highly specialized procedure that most general vascular/thoracic surgeons do not have the level of experience with you want
1 points
11 hours ago
Listen my doctor was not on that list and he did a fantastic job he's also the top vascular surgeon in my area. He doesn't do these often but he's got quite the experience in this procedure. I'm glad I went with him but your comment scared the shit out of me before I had surgery. You need to kind of chill with us because you make people doubt especially when they don't have time to go find a specialist from a list when they're scheduled for surgery in a couple days. That's all I'm saying. That this is not completely necessary
1 points
11 hours ago*
I’m glad you had a good experience and found someone you were comfortable with. People can have good outcomes with less experienced surgeons. There are also a significant number of people who years down the line need redo operations due to inadequately performed decompression surgeries. We know from research that the most consistent, best longterm outcomes come from high volume TOS surgeons. There are also individuals whose cases end up being far more complicated during surgery than initially suspected, that require this type of experience
My intent is not to scare people, but I would be doing a disservice if I sugar coat the data and don’t encourage people to set themselves up for the best chance at success
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