Thoracic Outlet Syndrome - Deep Vein Thrombosis and the decision = To have surgery or not

I've been diagnosed with TOS and had a deep vein thrombosis in my arm. I'm scared and lost and feel pressured by the doctors to have surgery without fully understanding the repercussions to my climbing career. I don't want to have a rib removed along with the scalene muscle - my doctor was not very forthcoming with other options or any references for other doctors. I don't understand if this is the only solution. They basically presented to me these options I either have the surgery and get back to normal after recovery (assuming it doesn't inhibit my climbing - they don't specifically have any experience with climbers) or quit climbing and any other activity that requires intensive shoulder mobility and be on blood thinners for the rest of my life. Can rehab be done to expand the area to prevent crushing of your vein - or is that simply needed in conjunction with surgery is there an "or" option?

If you do have surgery, what happens after the recovery - can we still accomplish all movements needed as a climber - can we still be as strong - while missing our first rib and scalene muscle?

Has this always been a problem or did it recently develop with climbing?  If it wasn't an issue before, does it really require such a radical approach?  It seems suspect that you'd need surgery now and not before, if it was truly a structural issue requiring surgery. Perhaps a PT who has  expertise in this area might be able offer exercises to open up the scales and surrounding soft tissues and  free up the nerve? Might want to look into nerve glide exercises to help. Also, a knowledgeable massage therapist,  acupuncturist,  and focused stretching on you own could help too. IMHO, surgery should be last option. 

Take a look at these -

Thoracic Outlet Syndrome, Rib Resection, Recovery Stories?
Returning to Climbing with Thoracic Outlet Syndrome

Gen, I went though this a few years ago. The one thing I learned throughout my long journey is to see a specialist right away. I first saw vascular surgeons that had a little experience with TOS, but it was a waste of precious time. I went through various treatments and unnecessary surgeries only to end up right where I started. Eventually I went to see Dr. Thompson at the Barnes Jewish Hospital in St. Louis and he works with professional athletes of all kinds, including climbers like us. They even have a center for TOS ( tos.wustl.edu/) and this guy literally wrote the book on TOS. I ended up needing vascular reconstruction on my subclavian vein, but that is most likely due to the 'wasted' time with the previous doctors (about a year) and my vein just became more occluded. I am back to climbing harder than I ever had before and have had zero issues with my TOS since then, even with removed scalenes and first rib. I am happy to share more of my story or any other info you'd like, but please see a TOS specialist because this is a complex and serious issue, which ordinary doctors with little or no experience cannot handle properly.

I am no doctor but I would think a years long stretching/strengthening/rehab program might be a viable alternative long term solution.  If I were in your shoes I would find a professional opinion (if it exists) which aligns with that and judge that persons credentials and everything else and decide if it is the right thing to do.

Thank you so much @Mitch Y, knowing someone has gone through this and can still climb is a huge relief - but I agree - I think I will need to find a TOS specialist. The vascular specialist and surgeon have not felt particularly helpful.  We did discuss vascular reconstruction of the subclav vein, but he said it was a more dangerous procedure and that since it has been such a long time coming that the other veins have already taken up the slack in a sense and there is still some amount of blood flow, after bewing on the blood thinners for several months. I would love to talk with you more, if that is okay? 

I live in Canada - so I'm not sure how easy it will be to find a specialist here. 

Thanks again to everyone   

If you’re getting DVT from TOS it sounds like the decision to get surgery has already been made. Nor meaning to sound mean, but do it. The mountains (at least some) will still be there.

I went through this surgery on both sides. I had a right rib resection in 2021 and then had my left rib resection in 2022. Honestly, on the grand scheme of surgeries I think the recovery isn’t horrible. I am back to full power climbing in January of 2023 after 2 years of procedures and surgeries. I had a DVT in my right arm and was terrified to have that occur again. I didn’t want to go back on thinners and wanted to move on with my life. I am happy to answer any questions I can about the surgeries / recovery / anything! Shoot me a DM anytime! 

I had similar diagnosis in 2021. I had 2 ribs resected May 2021 by vascular surgeon. I was back climbing in the gym about 3 weeks postop - still had trouble making long reaches. I was back climbing full strength about 2-3 months postop. I still have cold intolerance in some of my fingers and I had nerve damage from the surgery that has caused my right pectoral muscle to atrophy significantly. Overall though, I'd say pretty easy recovery and long term prognosis. I take a baby aspirin daily per surgeon recs, otherwise nothing chronically. Worst pain post op was from sneezing - no joke. Feel free to DM if you want more info

I had TOS (caused by work, hands would go numb constantly) and it took 6 months to find any doctor who knew anything about it. They ordered tons of tests and couldn't tell me anything, was really strange. Finally found a doctor who specializes in this and he diagnosed issues in my neck, elbow and wrist. He did a surgery in my right elbow to address the entrapment issues there, which helps but didn't cure it, and he was generally really great. 6 months of PT didn't cure it, since I still had the issues in the neck. What DID address the issues was a physiatrist doing 3 rounds of botox in my neck, 4 months apart. That enabled the muscles to stop clamping down. I still have issues if I work on the computer or use the phone too much, but botox was an absolute game changer. 

Hopefully you have recovered, living with TOS is devastating.

Depending on the cause of the TOS, various treatments can be helpful/necessary. If it is due to muscular imbalance/tightness, a good masseuse, acupuncturist, or PT can do a lot of good. If the problem is stenosis due to arthritis or other degeneration, surgery may be the only way. I agree that talking to multiple specialists is the best answer, especially because it is serious enough to cause DVT.

In the mean time before you make a decision on how to move forward permanently, seeing a bodyworker or acupuncturist temporarily can provide a lot of relief.

Edit: I'm sure you are well aware, but if you are getting clots this issue is a threat to your life, so timely treatment is certainly worth it even if it puts climbing at risk.