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Thoracic Outlet Syndrome, Rib Resection, Recovery Stories?

Original Post
Brent Kelly · · Boulder, CO · Joined Jul 2010 · Points: 157

**** EDIT: STICKY POST *****

This is a thread for RECOVERY stories for those who have had the surgery. 

If I could, I would go back in time to the year before my syndrome led to a serious deep vein thrombosis, which made 1st rib resection feel necessary, and prevent surgery altogether through more diligent and attentive self-care - particularly stress reduction, posture improvement, and upper chest breathing exercises.

DO NOT take this thread as an endorsement of surgery as the ideal path of care for everyone with TOS symptoms. For me and my medical team, surgery was chosen only after all other options had been explored and deemed unsuccessful.

Thanks, 

Brent

_______________________________________

Anyone have a history of (Venous) Thoracic Outlet Syndrome? Did you get the 1st rib resectioning surgery? How was the recovery period and have you returned to climbing? To be brief, 2-5 years of shoulder pain and instability after ~10 years of fencing, climbing, cell phone use, desk-jockeying, and other general use and abuse of my right shoulder culminated in my arm going swollen and blue after trying to ease back into climbing after a few weeks of methodical physical therapy and rowing. Figured I had just overdone it and pulled my bicep, but when the pain and stiffness got to be unbearable a few days later, I visited the ER and was diagnosed with Deep Vein Thrombosis, a blood clot from my right elbow to under my clavicle. Fortunately I did not have any form of pulmonary embolism, and the clot was dissolved via IV catheter within a day. The reason was diagnosed as Venous Thoracic Outlet Syndrome, most likely a result of all the unbalanced muscle development, chronically poor posture, a few instances of shoulder trauma, etc, etc. Personally I suspect a portion/majority of my shoulder instability and pain issues over the last few years are related to the now diagnosed TOS, and that previous traumatic injury to my shoulder had never been properly treated, but I'm not a doctor. M.D. doctors are awesome, and I'm on anticoagulation medicine now (coumadin) and will be getting my 1st (thoracic) rib removed in the next few months. Hopeful I'll be able to return to climbing full-force after the requisite R&R, docs have said this is plausible.... I'm hoping all the neck and shoulder neurological issues of the last few years will be alleviated too. Anyone else dealt with the same issue and willing to share their path to recovery and getting back on the steep stuff? Thanks in advance! -BK

RobertMeck · · Faribault, MN · Joined Nov 2010 · Points: 5

Hi Brent, my adult son had this exact condition and had his first rib removed 6-7 years ago. Lot's of physical therapy since then and he still cannot climb anywhere near as hard as he did before, he climbs now "occasionally". I wish you well on your recovery and if you find something that speeds it please post it to share with others. Good luck.

Catherine Klauss · · Boulder, CO · Joined Mar 2016 · Points: 0

Hi Brent,

I actually had a first rib resection and pec minor release on my left side about 6 months ago.

A bit of history: I was climbing regularly for a few years when out of the blue (no big fall or anything) I had shoulder pain that I thought was tendinitis, but it progressed into full arm pain within weeks. It was a combination of neurogenic, venous, and arterial TOS. Even though the blood vessels were severely pinched, I never developed a blood clot. I think I would have eventually, but the nerve pain was enough to get me on the couch and talking to doctors.

This surgery really does drop you on your ass for a while. I was in the hospital for four days, which seemed about average. It's very invasive and close to your lungs, so they watch your lungs for at least 24 hours, and you'll be so short of breath the first few days it will be hard to talk, but this improves really quickly (and they give you a fun toy to measure your lung capacity). I recommend having someone act as a caregiver for at least a week, maybe two. I was not able to put a shirt on by myself at first, let alone cook.

The first month out of surgery I was moving my arm but not lifting any weight with it. Most of my arm was numb from small nerve damage, but 70% of that resolved within the first 6 weeks (there is still a spot on the back of my arm that I think will never regain feeling). 2-3 months after I could start carrying simple things, like groceries, with both arms. 4 months I could start riding a bike again (would have been sooner if not for the icy roads), and I had issues with lung capacity (the muscles around my ribs were very tight at first) but that resolved within a few weeks.

It took me about 5 months post surgery to try climbing again. It's been only one month since then and I've been progressing well, a lot faster than I thought I would be able to, but there is a lot I still cannot do. Because they took out some muscles (pec minor and some scalenes) I have been focusing on teaching my shoulder and neck to move properly without that muscle. There will definitely be a lot of sore, knotted muscles when you first start.

I am still going to PT weekly, and they are happy that I am able to get back to climbing but stress to be very, very careful. But I have noticed that since starting to climb again, my recovery has accelerated, and I think that it's actually great exercise for the shoulder. I am hopeful that a full year after surgery I will be near my original climbing level.

I'm trying to look at this with a positive light, and have noticed that my technique is getting a lot better since I am on easier grades and focusing on slow, controlled movement.

I am also in Colorado so if you want more specific advice such as the surgeon and PT that have helped me, let me know.

Would I do the surgery again? yes. Even though I am not as strong as I was last year, I am a lot better than I was 6 months ago. I was actually not able to walk long distances before the surgery (due to the pinched nerve) and I was so happy just to be able to walk down the block again! Climbing again is a plus!

Brent Kelly · · Boulder, CO · Joined Jul 2010 · Points: 157

Thanks for the kind words and helpful information!

Definitely looking forward to the rehabilitation process, getting off the anti-coagulation medicine, and being able to climb again.

In the meantime the most helpful thing I've found is to stay active and pursue alternative means of adventure. Focusing on getting back some cardio/jogging fitness and on hiking new areas is how I'm combating the frustration of currently not being able to climb, fence, or do much of anything that involves upper body.

Also trying to stay positive about it, the injury has been a surprise suggestion to shake up the routine and explore new terrain.

shaunsclimbing · · Unknown Hometown · Joined Sep 2014 · Points: 0

I have been diagnosed with TOS about 5 months ago even though I have had symptoms for about 1 year. I am supposed to have an MRI but this is Canada so unless I want to pay 1200 (might do soon ) I am going to be waiting a long time. I have had no significant medical imagery that has been a factor in my diagnosis, it is all based on my symptoms. Treatment for now is climbing conservatively, massage therapy, and doing what I call my grandma workout which consists of light weights and a mix between pilates and yoga.

Main symptoms are pain in median nerve into middle finger. Tight muscles and tendons in my hand, arm, and neck (sclaenes and scm) and strange horrible sensatom when my arm is raised over my head for too long. My nerves also get pinched if I hold in a deep breath in my chest.

I am going to try to battle through TOS for this climbing season and will re evaluate in the fall and consider if NB I surgery would benefit me.

Thanks for the stories from all the other climbers it is all useful information!

Brent Kelly · · Boulder, CO · Joined Jul 2010 · Points: 157

Hey Shaun,

Thanks for sharing. Sounds pretty similar to the symptoms I had/have. Sorry to hear that medical imaging is so expensive. Even here in the U.S. I was seeking (& not seeking) care with pretty limited health coverage, so I can relate to the financial considerations.

Props to you for the conservative & preventative approach. Sounds like that's under the recommendation of your doctor, as well? All the physicians I spoke with said that for young climbers who want to keep climbing, until the symptoms of TOS get more serious - e.g. intense pain or sense that your blood circulation is at risk - light PT is the prescribed course of action.

Though, it did seem to me to be a very fuzzy area between "meh, maybe this will get better with some physical therapy" and "you're blood is not getting to where it needs to be, you need anticoagulation meds immediately and surgery pretty soon". Hope you're symptoms have dissipated by autumn! But, coming from someone who wishes they'd seen a doctor sooner and saved themselves a few expensive days in the hospital, please do be extra careful and respectful of any symptoms that don't go away or that get worse. Not sure how the Canadian health care system works, but maybe it's worth getting on the waiting lists just in case you still need it when you're front of the line?

shaunsclimbing · · Unknown Hometown · Joined Sep 2014 · Points: 0

Hey Brent,

I am taking this approach because I really have no other choice. My family doctor is very smart but has never dealt with anyone who has had TOC. All she can do is put referrals out to specialists Every doctor I am referred to I get put on a waitlist for weeks to months and then when I finally am able to see them they tell me I need to see someone else and get some other test done by some other physician. Maybe I wouldn't be as hesitant to spend the money on an MRI if I had a doctor that had experience in the field or was at least trying to learn about TOC.

Definitely keep us posted on your progress and I will do the same. Good luck.

Oh and I live in Squamish BC. if anyone reading this can recommend a doctor around Van I'd be keen on talking to a pro.

Brent Kelly · · Boulder, CO · Joined Jul 2010 · Points: 157

Quick update as I just had the 1st rib resection.

Today is Friday, Surgery was Tuesday. Spent tuesday night in the hospital, went home wednesday morning. Was driving milk runs Thursday. Pain has been surprisingly tolerable, not much more than Tylenol needed. Even went for a short hike in the neighborhood hills yesterday. Definitely stiff and sore around the shoulder and chest, but already working on regaining mobility. Breathing exercises with an "Airlife" lung capacity measuring tool have been super effective and help with pain reduction, mood improvement, fatigue, etc. Impressive how impacfult breathing exercises are. A little numbness around arm but I'm expecting the normal sensation to return. Discomfort making sleep difficult has been the worst of it, but not really all that bad.

I have a followup with the surgeon in a month, on coumadin to ensure anticoagulation til then. Surgeon has been pretty confident that I'll be back to trail running in a about that much time, easing back into climbing/mountaineering in about a month after that.

Only complication so far is that I waited so long to have the surgery (due to extenuating circumstances), that my subclavian vein has coagulated to the point the doc couldn't reopen it. I'm told that's just how it will be now, but that anastomosis will expand/generate new channels for the veinous flow, and it shouldnt be something i notice or that is too inhibitory.

All in all, looking forward to hopefully getting back to full force climbing/mountaineering by fall, wishing I'd been able to have the surgery back in Feb when first manifested DVT clot, or even earlier if it'd been possible to diagnose before then. Compelled to focus more consistently on stretching and mobility, yoga etc, and to be a little more balanced throughout climbing sessions

Best of luck to all in similar circumstances!

Catherine Klauss · · Boulder, CO · Joined Mar 2016 · Points: 0

Thats great! Surgery most have gone really well if you were out after only a day. The numbness around the arm clears up after a few weeks (and itches like crazy while it's healing, I would recommend icing it to deal with the itches), although I have a small spot on the back of my arm that never fully went back to normal feeling. Cant believe youre already hiking already my breathing was so shallow the first few days I couldnt even speak normally! The little air capicitance toy was my favorite part of the hospital too, a lot of my colorado friends got a kick out of it and wanted to play with it.
Best of luck with recovery!

Drew Pearson · · Unknown Hometown · Joined Jul 2016 · Points: 0

Hey Brent and Catherine,

I'm another Colorado TOSer myself. I've had a rib resection on both sides a couple years apart (dominate right side in 2007 and left side in 2009) and would definitely keep an eye on that telltale finger numbness on the side that wasn't operated on. The first one went undiagnosed for way too long and I had a long hospital stay for subclavian thrombosis. For the second one, I was getting that tingling in the fingers while driving and got it checked out. That one was an easy overnight operation and after a solid 3 months of PT, I was back to 100%.

Happy recovery and get back out there!

Savanah T · · Golden, CO · Joined Apr 2016 · Points: 10

Hey all!

I'd love an update as well, just like the poster above. I had a rib resection surgery and (hopefully) final angioplasty a week ago, after what my surgeon told me must have been 10+ years of TOS based on the state of my vein (currently am only 20).

At this point in recovery, I'm a little worried about how returning climbing is going to go over. I'm still having pain in my chest, and some muscle pain in my back and shoulder (from constantly hunching over unknowingly). Another odd thing to note is that I can't see my clavicle on the side the surgery was done, but I'm attributing that one to swelling.

Hearing how you guys were able to ease back into climbing would be great. Hope all of your recoveries went well. Thanks in advance!

Brent Kelly · · Boulder, CO · Joined Jul 2010 · Points: 157

Howdy y'all. Thanks for sharing your surgery and recovery stories.

Here's a ~6 month follow-up on my recovery from surgery.

I'll start with the standard disclaimer that I am not a medical professional and am only sharing my own experience, not offering professional medical advice.

Surgery was mid-June, 2016.

After about 2 weeks, I was back to a normal daily routine without much pain, though mobility was still limited and there was some tenderness and I was still working on regaining full lung capacity. Daily mobility and breathing exercises were very therapeutic and reassuring that capability was coming back, slowly but surely.

After about 4 weeks, I was easing back into trail running, and felt like I had pretty normal lung capacity again. I saw my surgeon for a followup and was told everything seemed to be recovering well (despite the permanently occluded subclavian vein), and tapered off of the coumadin.

Around 2 months post surgery I was easing back into light climbing.

After 3 or 4 months I was back at 100%. One nice thing was that with the mandatory post-op R&R and emphasis on cardio during recovery, I was feeling pretty fresh and well rested. The veins in my right shoulder are much, much more prominent than the left, and I try to be very conscious of warming up before doing anything super intense, and also of ending my workout before I'm too fatigued to maintain decent form, but I've had enjoyable full days out on multi-pitch routes, and not many more exceptional concerns or limitations than before the TOS popped up.

There's still lingering stiffness -- especially when I'm spending too much time hunched over a computer, or dehydrated/tired/stressed, or neglect to stretch and do antagonist exercises before&after bouldering sessions -- and I'm planning to followup with an ortho, neurologist, and/or physical therapist in the next couple months to address some of the occasional numbness/tingling, as well as neck pain and pops and clicks.

Happy recovery to all.

Have fun, be safe, check your knot!

Alex Rogers · · Sydney, Australia · Joined Sep 2010 · Points: 40

I'm interested in finding out whether TOS is progressive, and how many people manage it through stretching / physical therapy?

I'm pretty sure I have mild TOS. Have been upping my climbing for last 8 months, and over that time have increasingly being getting tingling sensation & numbness in right little and ring fingers, sometimes a bit on palm and base of thumb as well. When it is bad, it goes all down my arm, and source seems to be top of right shoulder near base of neck. Very mild on left side, much more prevalent on right side (dominant). Sometimes wake up at night with completely numb hands. Always worse after training/climbing, never really severe, no loss of strength.

My doctor knows nothing about TOS, suggested carpal tunnel / RSI, but that's not right. Found out about TOS from Julian Saunders website, and sounds exactly like this. Have tried some manipulation / massage from osteopath, who also didn't know much about it, but treatment helped, and stretches recommended by Saunders also help. So I plan to continue training & climbing, and just try to add more stretching to my regime + occasional massage.

Just wanted to check I'm not being stupid and neglecting something that could get much worse? Sounds like most of you on this thread have much more serious TOS where venous system involved - for me it just seems to be nerve impingement, and pretty minor at that. Understand you can't give medical advice - just interested in your experiences / advice. Thanks

master gumby · · Unknown Hometown · Joined Jan 2016 · Points: 262

Any more updates Brent?

Just released from a week stay in the hospital for clots in my vein, artery, and lungs. Pretty crushed at the moment. Story sounds almost identical to yours. I was just starting to get my feet wet in alpine climbing/mountaineering and am wondering if there will  be any limitations in climbing with a heavy pack on or long days out there (20 hours etc...) any insight would be really appreciated.

Danny

Leon Agee · · Unknown Hometown · Joined Jun 2017 · Points: 0

Hey Brent,

I was searching the web for stories related to my surgery, and I seen your story pop up. I went through a similar event except mines accrued from playing football and baseball. This November will be two years since I have had the surgery, and I still have pain in lower neck/upper back area. Also, if I rotate my arm it makes a grinding sound. I was wondering were you, or anyone else experiencing this as well. 

It seems as if everything went very well with your surgery being you were able to leave soon after. I hope everything continues to go well for you. It definitely isn't something that will sideline you forever. I received this injury my senior year of high school, and was still able to play football in college without any other serious injury. I just really haven't been able to workout the pain in my right neck and shoulder, and also the grinding sound. Except for those things, everything else has been great, but if you can give me some feedback on your pain level and recovery at this time. Thank you 

Brent Kelly · · Boulder, CO · Joined Jul 2010 · Points: 157

Alex,

As far as my limited, non-expert understanding goes, the syndrome is progressive, but it’s a syndrome, not a specific disease or disorder. It's a diagnosis of exclusion which means the true root cause can be a mixture lot of things that result in compression on the outlet. As far as I’m aware, there’s no simple, easy, cost effective tool for clear signal diagnosis, and even if there was, the prescribed treatment is usually the same. Have you considered finding a doctor familiar with TOS?

I suspect mine developed primarily from overtraining and not doing PT/antagonist workouts regularly enough to manage muscular balance and scar tissue, climbing while hungry/dehydrated, climbing through bad pain, etc. I was having similar nerve impingement symptoms as you before it developed to venous/DVT, but not as bad. I think my compression developed more on the sternum side than the acromion side of my clavicle. I wish my nervous system symptoms had gotten much worse and made it a more obvious issue before it had progressed to venous/DVT, but alas, the pain was ‘manageable’… Sounds to me like you're taking a reasonably cautious approach and should have some sense of whether it’s getting worse or better over time.

 

Danny,

To be brief: Stay psyched! Find activities that keep you healthy and stoked while you focus on the PT/recovery activities that will get you back out there ASAP. I haven’t had any big heavy backpacking expeditions yet, partly because I want more confidence in my TOS recovery before I undertake that risk. But, I recently sent something fun and somewhat hard that I’m proud of, and just recently had an awesome fun 11 pitch, 12 hour adventure day in Yosemite Valley.

Leon,

I still have shoulder stiffness and aches, popping and crunching, and back pain like I did before my DVT developed. Currently there’s much less pain and stiffness than the days leading up to my DVT, but 1 year post-op and I’m also still working on balancing things back out, clearing out scar tissue, etc. I take it as a reminder that the TOS developed in part by not paying attention to these symptoms and playing through the bad pain, and that I still have work to do to get things back into alignment.

Really glad to hear you were able to get back on the field and play! Thanks for the motivation to keep up the PT!

jedeye · · Unknown Hometown · Joined Feb 2009 · Points: 18

So sorry you've all had to deal with this. Preventative measures, especially those that keep the clavicle + scapula free of the ribs, can do so much to keep surgery at bay. And can help in recovery once you've had surgery.

master gumby · · Unknown Hometown · Joined Jan 2016 · Points: 262

Thanks Brent - stoked to hear about your 11 pitch day in the valley - Rad!

Jedeye - what do you mean by keeping the clavicle and scapula free of the ribs?

Alex Rogers · · Sydney, Australia · Joined Sep 2010 · Points: 40
Brent Kelly wrote:

Alex,

 Sounds to me like you're taking a reasonably cautious approach and should have some sense of whether it’s getting worse or better over time.

Thanks for that advice / feedback, appreciated. I am managing, not getting worse, so will continue with the stretching, massage etc. If it does get worse, I'll try to find a PT or Dr who knows something about this 

Phoebe Knox · · Unknown Hometown · Joined Jul 2017 · Points: 0

I'm having first rib resection in two weeks. I have both Neurogenic and Arterial TOS and getting operated on at Children's Hospital in Boston from a TOS expert. I've been a collegiate rower for 3 years and my TOS took me out of my junior spring racing season. The surgery and recovery will take me out of senior fall too. Pretty nervous about the recovery and if I will get back to full speed once I'm fully recovered. Any advice from higher level athletes on if you could return to a full training load once recovery is over? My doc says 16 weeks post-op until I can return to my max training level again (9-10 practices a week, ~2 hrs each)

jedeye · · Unknown Hometown · Joined Feb 2009 · Points: 18

Another aspect of this area is rib movement. A lot of people don't breathe into their upper lungs, so the upper ribs (behind the clavicle) don't move. Without movement, tension builds up between the ribs and the clavicles, and around the shoulder blades, as we're all familiar with. Eventually, impingement is likely.

There's more to it, of course. It just seems to me that this should all be very well understood by anyone with this problem, and more conservative treatments attempted, before surgically removing useful, perfectly functioning body parts that are merely innocent bystanders. 

Guideline #1: Don't be a jerk.

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