Thoracic Outlet Syndrome, Rib Resection, Recovery Stories?

Physicians in the USA fix the problem by only looking at the area there was a problem. 2 years later I am starting to understand why I had TOS and it had nothing to do with the first rib, sub clavian muscles or any of the areas that were operated on. Given TOS is not a genetic issue (for most) and is common in overhead athletes, chances are there is a mechanical issue going on which is the root of the problem. A physician slicing and dicing your bod up won't help that.

Also regarding seeing the physician again, probably not much more he will say besides give it 9-12 months and if you are still having issues come back and see me, at which point they will talk about a pec minor release, and other muscle releases, i.e. cutting. If you find the right PT/osteopath and work your ass off you can fix these issues without surgery and further altering your body.

Thanks Ashley! How have you felt recovery has gone? I will be 2 months post op August 6th!

I feel like it’s gone well! I’m actually having to get the rib taken out on my other side too now...no clot; but venogram shows vein compression. There’s been debate over whether or not I should get the left side done with no symptoms but all my physicians are in agreement and insurance is covering it and have already met my deductible from the thrombolysis and first rib resection so here we go again lol. 

Hey Everyone, Thanks for sharing all your stories with TOS and rib resection surgeries, it's been super helpful and insightful while going through this myself! I guess I'll share my story as well, maybe it will add something to the conversation.

Been climbing for 15 years and have been a routesetter for the last 10. About 4 or 5 years ago I started noticing problems in my arms while working and climbing, mainly getting really pumped and not being able to shake out or de pump on routes. Over time this got worse and worse and began to start causing a lot of pain in my forearms while I climbed, as well as lots of neck and shoulder pains while routesetting. I spent the last few years doing lots of pt, alignment excersizes and over the last year a semi intense schedule of deep tissue massage and release to try to alleviate symptoms. While the pt and massage relieved the most intense pains somewhat they were still always there and I was always left with a feeling of being pumped for a few days after climbing or setting. I also started to notice a deterioration in the muscles in my arms, it felt like I was getting progressively weaker and weaker. I also had chronic fatigue.

It culminated in a DVT in my subclavian on my right side in early april. After getting lysis to clear the clot the hospitals surgeon recommended the rib resection to release pressure on my subclavian as the venogram showed almost complete occlusion even with my arm down. Finally after a few months I had a venogram/angioplasty last tuesday to open the vein and a rib resection on thursday to remove the rib.

So far everything has been going really well, the angioplasty was successful in re-opening the vein and after the rib removal my shoulder alignment seems much better and more relaxed. Comparing it to the left side now it seems as if my first rib is pushing the clavicle forward a bit which results in the shoulder rolling forward. I have a good amount of crunching on my left side when moving the shoulder up and down which seems to be gone from my right side. I can also feel the clavicle popping over the first rib when I lift my arm up; this was the same on my right side before the rib resection but seems to be gone now that the rib is gone.

I feel like in my case it really came down to the way my rib cage and clavicle developed and it was basically a mechanical/alignment issue with how things came together. I know it's only been 4 days since surgery but I'm extremely optimistic about moving forward and coming back healthier than I was before!

I go back for another angioplasty in a few weeks and the Dr feels he can open up the vein even more and hopefully we can restore it to almost normal function! He has imaged the left side and there is compression there as well so I'm probably looking at getting the same done on my left side. Due to the symptoms I experienced the last 5 ish years on both sides I'm convinced the issue is the same and the rib resection will be successful on that side as well.

I'm curious about others experience with the recovery process, what things did you find the most helpful for recovery and what things do you wish you had done differently, if anything?

Jay Samuelson wrote: Hey Everyone, Thanks for sharing all your stories with TOS and rib resection surgeries, it's been super helpful and insightful while going through this myself! I guess I'll share my story as well, maybe it will add something to the conversation.

Been climbing for 15 years and have been a routesetter for the last 10. About 4 or 5 years ago I started noticing problems in my arms while working and climbing, mainly getting really pumped and not being able to shake out or de pump on routes. Over time this got worse and worse and began to start causing a lot of pain in my forearms while I climbed, as well as lots of neck and shoulder pains while routesetting. I spent the last few years doing lots of pt, alignment excersizes and over the last year a semi intense schedule of deep tissue massage and release to try to alleviate symptoms. While the pt and massage relieved the most intense pains somewhat they were still always there and I was always left with a feeling of being pumped for a few days after climbing or setting. I also started to notice a deterioration in the muscles in my arms, it felt like I was getting progressively weaker and weaker. I also had chronic fatigue.

It culminated in a DVT in my subclavian on my right side in early april. After getting lysis to clear the clot the hospitals surgeon recommended the rib resection to release pressure on my subclavian as the venogram showed almost complete occlusion even with my arm down. Finally after a few months I had a venogram/angioplasty last tuesday to open the vein and a rib resection on thursday to remove the rib.

So far everything has been going really well, the angioplasty was successful in re-opening the vein and after the rib removal my shoulder alignment seems much better and more relaxed. Comparing it to the left side now it seems as if my first rib is pushing the clavicle forward a bit which results in the shoulder rolling forward. I have a good amount of crunching on my left side when moving the shoulder up and down which seems to be gone from my right side. I can also feel the clavicle popping over the first rib when I lift my arm up; this was the same on my right side before the rib resection but seems to be gone now that the rib is gone.

I feel like in my case it really came down to the way my rib cage and clavicle developed and it was basically a mechanical/alignment issue with how things came together. I know it's only been 4 days since surgery but I'm extremely optimistic about moving forward and coming back healthier than I was before!

I go back for another angioplasty in a few weeks and the Dr feels he can open up the vein even more and hopefully we can restore it to almost normal function! He has imaged the left side and there is compression there as well so I'm probably looking at getting the same done on my left side. Due to the symptoms I experienced the last 5 ish years on both sides I'm convinced the issue is the same and the rib resection will be successful on that side as well.

I'm curious about others experience with the recovery process, what things did you find the most helpful for recovery and what things do you wish you had done differently, if anything?

I would have tried to have more patience, less self pity and not read so much shit on the internet about how awful life is with TOS. Fact is, its a mechanical issue that CAN be fixed, but it takes hard work. 10 years of poor climbing mechanics is not going to be undone overnight. Find a PT, preferably with an osteopath background and be prepared to work your ass off and maintain a positive attitude. Happy to chat more and share my experiences over the last two years through email should you wish.

Wow, impressive what a douchebag you just came off as. Hopefully it's just internet mis communication and you don't live your life like that in person. Good luck

Jay Samuelson wrote: Wow, impressive what a douchebag you just came off as. Hopefully it's just internet mis communication and you don't live your life like that in person. Good luck

suit yourself. Take it easy on the pain pills.

Master Gumby:

 I realize that I probably interpreted your post wrong and I apologize. I asked what people would have done differently and you responded with what you wish you had done differently; I took it as what I should have done differently and reacted to what I thought was an uninformed criticism of me. I apologize for the personal attack and do not want to de-rail this thread from it's informative and helpful nature.

Turns out it was internet mis-communication, and on my part. Looks like I'm the douchebag! lol I apologize and am sorry I reacted poorly

Thanks for sharing your story! Mine was similar with the venous TOS also. I had a clot in my subclavian and also in my basillic which developed secondary to the subclavian one. I had thrombolysis and venoplasty in late April and right rib resection in May. I’ve recovered nicely, I have regained full range of motion on my right side; not as strong as I was before; but getting there. Still some numbness in my right arm pit and deltoid; my surgeon said that it may restore itself back to 70% or so over the course of my lifetime but it’s normal if it doesn’t. They did my venogram in June on both sides and my right side does not show any compression; but my left side shows complete occlusion when the left arm is 60 degrees above or higher. So 9 physicians all told me to go ahead and get the rib on the left side taken out too. I also tested positive for Factor V Leiden heterozygous gene mutation and had to stop my birth control pills; it was kind of a triple whammy with the third thing being consistent overuse of upper extremities due to years of climbing and intense vigorous exercise/life of an athlete. As much as I’m not wanting this surgery again; I’m glad that the left side was caught before a clot...leading to more damage to the vein etc. they restored my right subclavian vein to 80% with the venoplasty. In occasionally experience cramping in my right hand; I am still on blood thinners but overall am doing well! I’ve had to modify my workouts for now but overall am doing well! I hope it’s the same for yourself!

Thanks Ashley, I'm glad to hear things seem to be going good for you! How long did you wait until you started some basic pt like bands? Are you climbing atm and how long did you wait to climb if so?

So far things seem really good, I have decent range of motion already and the pain has been pretty low, surprisingly so in fact. I think that the years of PT, posture correction and massage I did before I discovered I had TOS have put me in a good position to recover from the rib resection. It also helped me realize how important PT, stretching and posture are to the whole scenerio

When are you having the other side done? Did they give you a recommendation on how long to wait between each surgery?

Also did you have seperate venograms for each side? Just curious because they went through my heart from the right to the left side to image both and although I remember nothing else from the procedure at all I do remember thinking 'there's a wire moving through my heart' at one point...

So it was about 3 weeks post surgery before I started to doing anything at all with my arms. I waited until my follow up with the vascular surgeon to start doing anything. He said I would not need any official PT with an expert unless I was having range of motion problems—which some people argue that you should get PT regardless; but as a former personal trainer I knew some things (I realize not near as much as a professional physical therapist and I know they go to school for a long time and what I know is nowhere in any way comparable to what they know and have worked hard to learn so not comparing my knowledge to theirs in ANY way) I am a registered nurse now and have been for the last 6 years and being an athlete for most of my life I knew enough I felt like to recover on my own with stretches and strengthening exercises focused on correcting certain movement patterns and relaxing the scalenes and anterior pecs and teaching the lower traps to fire more. So..I have never done professional physical therapy; but I have healed just fine and was strong before which has helped me get strong again. There are plenty who disagree with my route though and will say that I should have let the professionals handle it.

Ashley W wrote: So it was about 3 weeks post surgery before I started to doing anything at all with my arms. I waited until my follow up with the vascular surgeon to start doing anything. He said I would not need any official PT with an expert unless I was having range of motion problems—which some people argue that you should get PT regardless; but as a former personal trainer I knew some things (I realize not near as much as a professional physical therapist and I know they go to school for a long time and what I know is nowhere in any way comparable to what they know and have worked hard to learn so not comparing my knowledge to theirs in ANY way) I am a registered nurse now and have been for the last 6 years and being an athlete for most of my life I knew enough I felt like to recover on my own with stretches and strengthening exercises focused on correcting certain movement patterns and relaxing the scalenes and anterior pecs and teaching the lower traps to fire more. So..I have never done professional physical therapy; but I have healed just fine and was strong before which has helped me get strong again. There are plenty who disagree with my route though and will say that I should have let the professionals handle it.

In regard to climbing; I have not gotten back into climbing yet; mostly due to concern with the overhead movements with my left arm and the fact that there is occlussion of the vein with those types of movements. I don’t know when I’ll get back into it; once I feel strong enough and my follow up venogram shows no occlusion on the left side at all and when the veins are restored enough.
They did a venogram on both sides only after my first rib resection; they did not do one on the left side initially; only the right side. I’ve never had symptoms on the left side but they are strongly recommending I do it as a preventative based on the results of the venogram showing the occlusion of the vein. It will be three months between each rib resection. They wanted to give my right arm enough time to get strong again and recover so that I’m not out two arms lol.  But they did not want to wait too long and allow a clot to potentially form; from a financial standpoint; id already met my deductible from the thrombolysis and first surgery so I wanted to get it done before December so I wouldn’t have to pay for it lol. I realize that’s the last thing that should take priority in a situation regarding your health; but I was glad it worked out that way!

Removing a rib for "preventive" measures seems like quite a stretch with the number of potential complications associated with the surgery, especially on the left side. If the left side has been pinched for however long and you have not had symptoms has your doctor not considered leaving it alone? When I had my surgery, my doctor discussed at length how he has seen cases which viens are often closed but co lateral veins formed and patients have 0 symptoms on the other side. Food for thought, as ripping a rib out a s precautionary or preventive, well I wouldn't want to do that to my body.

Jay Samuelson wrote: Master Gumby:

 I realize that I probably interpreted your post wrong and I apologize. I asked what people would have done differently and you responded with what you wish you had done differently; I took it as what I should have done differently and reacted to what I thought was an uninformed criticism of me. I apologize for the personal attack and do not want to de-rail this thread from it's informative and helpful nature.

Turns out it was internet mis-communication, and on my part. Looks like I'm the douchebag! lol I apologize and am sorry I reacted poorly

No worries man. Heal up and get back out on the rocks where you belong!!

I know not everyone agrees with my decision to get the other side done...I’ve considered alternatives but I feel like more can go wrong potentially if I don’t get it. I definitely understand the counter thoughts though. 

Ashley W wrote: I know not everyone agrees with my decision to get the other side done...I’ve considered alternatives but I feel like more can go wrong potentially if I don’t get it. I definitely understand the counter thoughts though. 

I am so sorry you have to get the other side done, BUT on the bright side at least they caught it before it could cause serious damage!! With my subclavian vein clot things got real serious real fast within the first week of realizing what was wrong I was in so much pain throughout my whole upper body, almost debilitating. I completely understand going ahead and taking the doctors advice to get the rib removed, better safe than sorry. Also how did you find out you needed the other side done? When they found my clot they did an ultrasound of each arm and in my left arm(the one with the clot) the ultrasound showed no pulse in multiple positions but the other arm seemed fine, I'm hoping they would have told me that we needed to check the other arm out if they saw an issue but who knows, I've seen a lot of people who have had both done, did you have an ultrasound of both arms?

Jay Samuelson wrote: Hey Everyone, Thanks for sharing all your stories with TOS and rib resection surgeries, it's been super helpful and insightful while going through this myself! I guess I'll share my story as well, maybe it will add something to the conversation.

Been climbing for 15 years and have been a routesetter for the last 10. About 4 or 5 years ago I started noticing problems in my arms while working and climbing, mainly getting really pumped and not being able to shake out or de pump on routes. Over time this got worse and worse and began to start causing a lot of pain in my forearms while I climbed, as well as lots of neck and shoulder pains while routesetting. I spent the last few years doing lots of pt, alignment excersizes and over the last year a semi intense schedule of deep tissue massage and release to try to alleviate symptoms. While the pt and massage relieved the most intense pains somewhat they were still always there and I was always left with a feeling of being pumped for a few days after climbing or setting. I also started to notice a deterioration in the muscles in my arms, it felt like I was getting progressively weaker and weaker. I also had chronic fatigue.

It culminated in a DVT in my subclavian on my right side in early april. After getting lysis to clear the clot the hospitals surgeon recommended the rib resection to release pressure on my subclavian as the venogram showed almost complete occlusion even with my arm down. Finally after a few months I had a venogram/angioplasty last tuesday to open the vein and a rib resection on thursday to remove the rib.

So far everything has been going really well, the angioplasty was successful in re-opening the vein and after the rib removal my shoulder alignment seems much better and more relaxed. Comparing it to the left side now it seems as if my first rib is pushing the clavicle forward a bit which results in the shoulder rolling forward. I have a good amount of crunching on my left side when moving the shoulder up and down which seems to be gone from my right side. I can also feel the clavicle popping over the first rib when I lift my arm up; this was the same on my right side before the rib resection but seems to be gone now that the rib is gone.

I feel like in my case it really came down to the way my rib cage and clavicle developed and it was basically a mechanical/alignment issue with how things came together. I know it's only been 4 days since surgery but I'm extremely optimistic about moving forward and coming back healthier than I was before!

I go back for another angioplasty in a few weeks and the Dr feels he can open up the vein even more and hopefully we can restore it to almost normal function! He has imaged the left side and there is compression there as well so I'm probably looking at getting the same done on my left side. Due to the symptoms I experienced the last 5 ish years on both sides I'm convinced the issue is the same and the rib resection will be successful on that side as well.

I'm curious about others experience with the recovery process, what things did you find the most helpful for recovery and what things do you wish you had done differently, if anything?

It seems like you are on a good road to recovery!! Which is awesome, cause this type of surgery can really take a toll on the body, I think if I could do anything differently I would have done the exercises that the hospital sent home with me more regularly, in the early days post op it was hard to do anything really(try telling my toddler that) so really pushing through those exercises is important, did they send you home with exercises? Also drink so much water too much water that you feel like you will pop, it is so easy to get dehydrated after a surgery like that, best of luck!!

Ashley:

I completely understand wanting to go forward with the other side even though you haven't had a blood clot yet, I'm in the same boat. I've been insistent to my surgeons that I need the left side done as well even before they imaged it and recieved a cautionary response towards unneeded surgery which I totally understand. In my scenerio though I have had symptoms in both arms for at least 3 or 4 years and I know that it needs to be done. Once he did the venogram on the left and discovered compression it confirmed my thoughts, although again after living through the last few years of pain I already knew it was necessary. The way I see it is if there is  compression and you are going to keep climbing then you absolutely need it removed, might as well do it before you have a major medical risk instead of after. Plus not having to pay another deductible is awesome!

Katherine:

Thanks for the advice I appreciate it! They did send me home with some excersizes, mostly just range of motion things for the shoulder which haven't been super helpful (i almost have full range of motion already, although I have to move through it slowly) but the breathing majigger thingy they gave me is super helpful. I'm anxious to get back to doing some pt with bands to strengthen some posture and alignment muscles but I have to remind myself I'm only a week out from surgery lol. The recovery is going so well I almost forget at times and get tempted to do some light workouts. It's probably because I haven't really climbed in the last year+ and my soul is dying for some food at this point lol

Also I don't think that an ultrasound will show the amount of compression on the vein it will only reveal a blood clot if there is one. I think you'd need to have a venogram done on the left side to determine if there's compression or not. I tend to think that if there is compression from the rib /clavicle crushing the vein then more than likely it's similar on both sides, seems like the body tends to grow symmetrically for the most part. I know that's the case for me, I think my left arm just doesn't feel quite as bad as the right because I'm right handed and tend to hold the drill and set with my right arm.

Has anyone noticed a long-term reduction in their deep lung capacity (measured by spirometry) from their first rib resection and scalenectomy?

Reason I ask is that I have annual VO2 max testing and spirometry performed for a cardiac issue. My resection was 9 months ago, and I had spirometry 2 months prior to the surgery. When I compare my spirometry results from this year (very recent) to last, I notice a substantial reduction in FVC (and as a consequence, a corresponding decrease in FEV). I've actually had a fair bit of discomfort in the musculature around my surgery site lately, which my PT attributes to my breathing patterns and reliance on my (remaining) scalenes on the non-surgery side, and trying to use my missing scalenes.
Didn't seem to affect my performance as my VO2 max is well above last years and great for my age, but still, I do actually feel different (less capacity) while deep breathing. Perhaps I need to re-learn how to breath?

I noticed after each surgery (I’ve had rib resection on both right and left sides) that I had the same thing. I’m only 12 days post-op from second surgery, I also developed a small pneumothorax on the left lung during surgery which should resolve on its own. I’m still doing my spirometer exercises and I still feel a sharp pain on my left side when breathing in deeply. Also hurts like the devil if I get hiccups or cough!! Also my body doesn’t alllow me to sneeze! It’s so weird...I’ll feel one coming on; but it’s almosy like it knows and is protecting me from the pain. I am only 12 days post-op second surgery though like I said; my first rib resection was 3 months ago and I had just worked back up to my original VO2 max but am now back to square 1 (or so I feel) after the other surgery. It’s hard to do breathing exercises right now as it’s still painful to breathe in deep; not as bad as it was; progressing but slower than I’d like to. 

I have never been so rigorous as to regularly obtain quantitative measurements of my breathing. I didn't capture any quantitative spirometry biofeedback/data, beyond the momentary pre-op spirometer baseline gathering - maxed it out at 4L, IIRC and if the nurses 5 second perfunctory "ok good enough" black sharpie mark at 4L could be accepted as valid - and the post-op therapeutic recovery efforts - which were mostly aspirational (no pun intended) and therapeutic, not scientific.

That being said, I definitely felt like my lung capacity was moderately challenged before the DVT developed and I was tagged with an "official" TOS diagnosis. Immediately post-op I definitely felt severely limited in breathing capacity. For about a week I struggled to get the AirLife Spirometer value over 2L or so. So, ~50% limited? That sense of limitation tapered and capacity improved. I was probably back to "90%" after 2 months or so, and somewhere between 6 months to nowish (3 years) I felt like I was back at "100%".

Somewhat surprised to feel like you haven't found "normal" after 9 months post op, but I'm 3 year post-op and still am not sure the true scope of what I've comparatively lost/gained from pre-dev and pre-op. Sounds like maybe it plausibly is related to that continued relearning of how to breath fully with the new musculature arrangement, as well as redeveloping a sense for what a "normal" full breath "feels like"? Though, with the underlying cardiac issue in play, maybe a good idea to keep an extra watchful eye on it and monitor your spirometry data more closely than most of us? I'm no respirologist though, and had to look up FEV/FVC here: en.wikipedia.org/wiki/Spiro…(FEV1). The better than last year VO2 max sounds like there isn't cause for excessive concern, maybe?

Recognizing my TOS is both cause and resultant of my sub-optimal breathing routines, I've also come to realize that my lung capacity being "moderately challenged" - back when I knew I was having physiology issues but didn't know how serious/consequential it was going to get - was likely a warning that TOS was on the horizon. The more I focus on conscious, regular, full breaths (yoga practice, mindful breathing breaks, whatever) the more I feel my nagging TOS-related symptoms temporarily alleviate.

The psychological mind-warp of TOS was definitely one of the most aggravating/frustrating parts of recovery for me. Had a panic attack just the other night when I was a little inebriated and dehydrated. I felt short of breath and started to faint after stepping out of a hot, long shower after an exhausting day that included watching someone take a 20ft grounder when a .3 cam placement failed. So my existentialism was already a little frazzled, and as I was l losing vision/focus, became anxious that I was losing consciousness from some blood flow issue and started panicking. Cried for help, "GUYS I THINK I'M DYING", briefly blacked out, freaked out my roommates a little. Very fortunate they were so measured in their response and helped me evaluate that I was mostly just tired, exhausted, and too tipsy. I take it as a continued reminder to stay hydrated, respirated, conscientious, and to err on the side of preventative caution.