Thoracic Outlet Syndrome, Rib Resection, Recovery Stories?

The different approaches by surgical teams for post-resection care is interesting. I never had any discussion with my surgeon or the surgical team pre or post-op about breathing issues, nor did I receive a device for working on breathing capacity. It's only because I work in the biological sciences that I even knew that the scalenes are accessory breathing muscles. Post-surgery, I did monitor my O2 sat through a finger device (on my initiative) and certainly saw my sats getting quite low post-surgery (around 92% vs normal of 97-98% for periods many days in the week or so after being released from hospital). I didn't have a lot of discomfort breathing, but I must have been breathing a lot shallower.

I don't think my current lung capacity seems to be a big issue, just wondering if anyone had noticed it or had it empirically measured. I'm down about 400ml on the total inhalation volume, which is actually a fair bit. I'm scheduled for surgery on the other side, and have been long hemming and hawing about going through with it given the muscular issues I've been having with the "fixed" side. Fortunately no clots (yet).
That said, my VO2 max (proper test with masked gas measurements while kicking it out on stationary bike) on a was up 7 points vs last year and is still in the top category for my age, and done on the same equipment, so it can't be hurting me when it comes to exercise, unless I'm breathing more deeply by using other muscles when working vs sitting.

That’s good data!

Has me eager for more commoditization of (accurate/precise enough to be useful/meaningful) diagnostics tools. Would be great if getting VO2 max, O2 sat, etc, was as easy as visiting those free blood pressure meter machines at the grocery store pharmacy...

O2 sat is easy - you can buy a finger monitor at at decent drug store, or Amazon. Typically used by people with pulmonary or cardiac issues.

For a real VO2 max test though (not the fictional VO2 max numbers that a piece of gym equipment like a stairmaster will spit out), you need to either get one done at a hospital as part of medical work up, or pay for one through an athlete testing clinic. If one is a competitive endurance athlete, the data can be a handy part of training, although VO2 max is certainly not the end-all/only important factor to consider when training.

​​​https://ericcressey.com/4-rules-of-posture​​​

My recovery has been unusual. Surgery 3 weeks ago. Minimal post op pain, mostly muscular in my back. Full range of motion after the surgery without pain, and no pain with breathing. Discharged less than 24 hours post op. Biggest issue thus far is a phrenic nerve palsy post op, which resulted in a paralyzed diaphragm on that side. I am essentially living on one lung. They say it should resolve in time.
I was driving in a few days, back to work in 10 days. Able to do push ups after 2 weeks
sadly, no improvement yet in the neuropathic pain that caused me to go in for the surgery in the first place

Sorry to hear about the phrenic nerve issue - scary! I really hope that resolves for you soon.

My surgeon made it really clear to me that resolution of neuropathic pain from the surgery didn't happen that often.

I'm nine months post surgery. Like you, I healed very quickly post-surgery, had full range of motion etc. Three things I found recently:
1) I seem to have permanently reduced lung capacity. Apparently I've been using my scalenes heavily to breath, and after scalene removal on my right side, I've lost 400ml lung capacity. Hopefully I can get that back if I re-learn to breath!
2) I've been getting back to running. I used to be a somewhat talented runner. Not run since before surgery and have been biking heavily since recovery. Running is extremely painful in my chest - right in the middle and over the surgery site where I have a burning sensation while running, and tightly contracting muscles. It seems to be the bouncing of running that is the problem, since I have no such issues on top effort bike rides.
3) Playing with my kids on the monkey bars recently and went to do a pull-up for the first time - felt like my surgery shoulder almost ripped out. What an unpleasant situation. Prior to surgery pull-ups were not an issue. Clearly some work I still need to do.

Thanks for the contributions to this message board.

I have joined the ranks of you with chronically occluded subclavian veins. I’m a guy in my 30s and had sudden arm swelling after some yard work of all things on July 10. I was diagnosed with Paget Schroetter Syndrome on July 19th and had thrombolysis, but my arm was still swollen and blue and painful on exertion. My right bicep is about 5 cm larger in circumference than my other bicep. I underwent a rib resection (Sept 9) and failed balloon angioplasty (Sept 28). The vein initially opened but the next day it had reoccluded. There is a 6cm segment of scarred vein with little-to-no blood running through it.

Symptoms haven’t changed all that much, and I’ve had to modify my activities. No more workouts or sports involving upper extremity activity; no more sports like road biking that are risky on blood thinners.  

I note in medical studies that some people’s symptoms improve over time. The vein reopens on blood thinners or good collaterals form. On the other hand some people don’t improve. They go for vein reconstruction surgery which has its own risks.

For those of you who have been in this situation I am curious what your experiences have been.

Did your symptoms resolve over time? If so, what interventions, if any, do you think helped? What was the timeframe like? 

Hey everyone I appreciate all the information my TOS I guess is extreme my vein is damaged and artery calloused.  I travel for work and I’m always moving. Two weeks before the episode I did the Tough Mudder. I woke up on a Saturday and my arm started to ache. I finally gave in and went to after hours care. I have a medical background so I knew all symptoms pointed to a blood clot. 3 doctor and put on blood thinner and taken off twice the 4/5 docs that worked together figured out the blockage and removed it. I almost died heart rate bottomed out. That was 8 weeks ago the collar bone and chest pain is steady my lack of breath (I think is due to the blood thinners). So I am schedule Dec 11 for my surgery all of this has me in knots. All of your information is very helpful. I was referred to a world renown Cardiothoracic surgeon who does these all day. But I’m still scared. Any advice is welcome females what did you wear? I work remote when I’m not traveling so I wonder if I can go back in a week after surgery? So many questions so much worry..... 

Brandy, I’m sorry this happened to you too.

Are you having a rib removed? Mine was a piece of cake. The anesthesia worked well, and I came off pain killers in a few weeks. My surgeon suggested I take a month off my office job and I’m glad I did to concentrate on rest and rehab. Everyone is different, but most people’s experiences and outcomes r positive.  Best cloths were button ups but after a couple days no prob w putting on a t shirt.
you got this brandy! 

This blog has been so helpful to me to hear similar stories of what I have went through.  Last October I noticed mild weakness and swelling in my right arm.  A trip to the ER confirmed a pulmonary embolism.  My own research pointed to Paget Schroetter Syndrome but local doctors didn't agree.  After months of misdiagnosis, in June of this year, I had total occlusion in my subclavian vein and underwent partial removal of the first rib along with cleaning out of scar tissue and a few muscles.  3 weeks after surgery, all of my symptoms returned.  I seeked out a specialist hours away from home and underwent the surgery a second time in September.  This time the doctor removed more rib, and more muscle but was unable to do vein reconstruction because the tissue was too damaged.  He followed up with balloon angioplasty 3 days after surgery and felt good about the blood flow because of the extra space that was created in the thoracic outlet during surgery.

I am now about 10 weeks post op and still have mild swelling and discoloration in the arm.  I was an avid runner up to the day of surgery (8 miles a day) and after 2 months off, am trying to run again.  I get tired so easily, my arm feels weak and i have the post pain in my shoulder blade area.  

I go back to the doctor in a few weeks and his hope is to take me off blood thinners.  I am nervous the surgery didn't work again and also super frustrated getting back to normal running and normal strength in my right arm.

I appreciate the stories of those with venous thoracic outlet and what recovery has been like.  Thank you to all who have shared!

Just had this surgery last week and documenting my experiences. I put the dates as I saw many posts asking for specific timelines on surgery recovery.
Climbed for 2.5 years mainly bouldering and ticked two V8s outdoors prior to surgery. 5’6, 135lb, male, 29 years old
11/12: Symptoms of right arm muscle tightness which subsided after 1 week followed by arm numbness when climbing. 
11/25: MRI and ultrasound diagnosis and blood thinners (xarelto) immediately after. Diagnosed with Paget-Schroetter Syndrome. 
11/27: Venogram showed a fully clotted DVT no ability to move a wire through the clot. 
Thanksgiving Break
12/2: First surgery to introduce catheter to administer medicine before thrombolysis. 
12/2: Thrombolysis performed to remove blood clot successful. 
12/3: Final surgery. 1. More clot formed in area and was removed. 2. Doctor finds that I have cervical rib (no idea how this was noticed before) and removes both cervical rib and first rib. Only scalene muscle cut and no other muscles were touched. Incision is through the armpit. 3. Vein is ballooned after rib removal. 4. Incision site is glued. 
My doctor gave me no limitations on working out or climbing and encouraged me to as quickly as able to in order: 1. Static stretch 2. Dynamic stretch 3. Return to activity
Recovery Milestones:
12/6: Slowly walk around
12/7: Discharge from hospital
12/8: Able to walk around, move independently, and able to incorporate right arm in most tasks.
12/10: Stopped pain killers. Can now start driving. Went to the climbing gym and climbed 2 ladder like V0s. Right arm is in bent position and not really climbing, but no pain in the locked position
12/11: Sleeping and turning in bed no longer hurts. Returned to work. Deep breaths/laughing/ light coughing no longer limited by pain, but still need to work on spirometer.
12/12: First day working out. Can do 20lbs right arm lat pull down 3 sets 10 reps (previous baseline ~150lbs). Second day climbing. Right arm movement resembles climbing with straight arm hangs. Able to do treadwall V1-V3 routes. Comfortable on V2 gym routes. Able to do all the moves except the last on moonboard problem “An easy problem V4”. Did light finger training on tension block and found for 10mm rounded crimp that right hand is only slightly weaker than left hand @ 45 lbs. Push ups are not an issue, tried a few for science.
12/13: Second day working out. 40lbs on right arm lat pull down 3 sets 10 reps. No longer feel any stretch in the incision site.
12/17: grippul test 15 degree edge at 108lbs on each arms, pre-surgery numbers were 128lbs on each arm. Looks like finger strength on the surgery arm was not affected as both arms just got weaker. Able to do multiple moonboard benchmark V4s comfortably. Spirometer numbers back to normal.
12/18: Doctor confirmed incision site is fully healed and cleared me for all activity. Lung x-ray shows that lung is fully inflated. Plan is to stay on blood thinners for another 2.5 months (3 months total)
1/2: 1 month after rib resection. I feel like I have a new arm. Able to climb hard without noticing and difference between right and left arm. Bouldering V6 moonboard. Lat pull down with the same weight on each arm (150lbs 3 reps, previous 6 reps). Main difference is less power and right Gastons still feel tweaky. Can do 1-3-5 on the campus board, but it feels like a struggle compared to before. Right rhomboid and trap feel sore consistently. Overall, climbing in the gym feels normal, able to climb the same gym grades as before surgery, and most acquaintances can’t even tell that I had a major surgery one month ago. 

TLDR; Got two right ribs removed 3 weeks after initial symptoms. Started climbing 1 week after surgery. Fully back to climbing with no issues at 4 weeks after surgery. Matched previous best in one session (V8) at hueco 6 weeks after surgery. Power & strength take a hit, but fingers come back quickly.

Matt Chung wrote: Just had this surgery last week and documenting my experiences. I put the dates as I saw many posts asking for specific timelines on surgery recovery.
Climbed for 2.5 years mainly bouldering and ticked two V8s outdoors prior to surgery. 5’6, 135lb, male, 29 years old
11/12: Symptoms of right arm muscle tightness which subsided after 1 week followed by arm numbness when climbing. 
11/25: MRI and ultrasound diagnosis and blood thinners (xarelto) immediately after. Diagnosed with Paget-Schroetter Syndrome. 
11/27: Venogram showed a fully clotted DVT no ability to move a wire through the clot. 
Thanksgiving Break
12/2: First surgery to introduce catheter to administer medicine before thrombolysis. 
12/2: Thrombolysis performed to remove blood clot successful. 
12/3: Final surgery. 1. More clot formed in area and was removed. 2. Doctor finds that I have cervical rib (no idea how this was noticed before) and removes both cervical rib and first rib. Only scalene muscle cut and no other muscles were touched. Incision is through the armpit. 3. Vein is ballooned after rib removal. 4. Incision site is glued. 
My doctor gave me no limitations on working out or climbing and encouraged me to as quickly as able to in order: 1. Static stretch 2. Dynamic stretch 3. Return to activity
Recovery Milestones:
12/6: Slowly walk around
12/7: Discharge from hospital
12/8: Able to walk around, move independently, and able to incorporate right arm in most tasks.
12/10: Stopped pain killers. Can now start driving. Went to the climbing gym and climbed 2 ladder like V0s. Right arm is in bent position and not really climbing, but no pain in the locked position
12/11: Sleeping and turning in bed no longer hurts. Returned to work.
12/12: First day working out. Can do 20lbs right arm lat pull down 3 sets 10 reps (previous baseline ~150lbs). Second day climbing. Right arm movement resembles climbing with straight arm hangs. Able to do treadwall V1-V3 routes. Comfortable on V2 gym routes. Able to do all the moves except the last on moonboard problem “An easy problem V4”. Did light finger training on tension block and found for 10mm rounded crimp that right hand is only slightly weaker than left hand @ 45 lbs. Push ups are not an issue, tried a few for science.
12/13: Second day working out. 40lbs on right arm lat pull down 3 sets 10 reps. No longer feel any stretch in the incision site.

Hope this helps. I am also going to try and do max hangs using the grippul some time soon. I participated in a study right before the injury and could do 128lbs on the grippul 15 degree edge with both hands.
Other milestones I can update on: able to hang on a bar, able to do a pull up, able to get back to certain moonboard/climbing grades, other symptoms. 

I am impressed/jealous that you were able to climb in 8 days. It took me 6-8 months to get back to climbing.... Just a reminder to everyone that the recovery from this surgery will vary significantly.

Fully understand results will vary. I did want to share what early stages recovery looks like for a climber as most articles only shared time to return to full sport which based on this article has an average of 4.7 month (range of 2-12): sciencedirect.com/science/a… . And ncbi.nlm.nih.gov/pmc/articl… which showed sample size 4 pitchers returning to professional play in an average of 5.4 months (range 3.5-7.1) which is amazing as baseball at that level is so demanding. Sample size of 6 NHL players was even faster at average 4 months to return to play (range 2.03-5.87)

Brandy Marshall wrote: Hey everyone I appreciate all the information my TOS I guess is extreme my vein is damaged and artery calloused.  I travel for work and I’m always moving. Two weeks before the episode I did the Tough Mudder. I woke up on a Saturday and my arm started to ache. I finally gave in and went to after hours care. I have a medical background so I knew all symptoms pointed to a blood clot. 3 doctor and put on blood thinner and taken off twice the 4/5 docs that worked together figured out the blockage and removed it. I almost died heart rate bottomed out. That was 8 weeks ago the collar bone and chest pain is steady my lack of breath (I think is due to the blood thinners). So I am schedule Dec 11 for my surgery all of this has me in knots. All of your information is very helpful. I was referred to a world renown Cardiothoracic surgeon who does these all day. But I’m still scared. Any advice is welcome females what did you wear? I work remote when I’m not traveling so I wonder if I can go back in a week after surgery? So many questions so much worry..... 

hey brandy! I had my rib removed in June of this year and I just got the go ahead to get off the blood thinners, I’m hopeful but also nervous. The surgery wasn’t that bad but the recovery was a bit rough, getting in and out of bed was difficult, anything that dealt with a crunch like motion of my body was difficult but I did the exercises  and was back to semi normal about 2 months post op. Definitely don’t wear a bra, you’ll find that your bra strap hits right where they remove the rib (well in my case it did) so no straps, maybe a baggy t-shirt for a while, when I did wear a tank top I always put one strap down, if you have any other questions feel free to reach out!!

Has anyone had the syndrome, had the surgery, went back post op and was taken off blood thinners? If so how did your body react?

Hi there,

It's been really comforting to hear all your stories of VTOS.
I had my Rib resection 2 months ago and have had a pretty rough road. I am going back into hospital next week for a Venogram and potentially angioplasty as they feel the vein is scarred. I didn't get put on blood thinners initially after treatment but ended up back in emergency the week after the operation as the arm was swollen and blueish.
Not really sure what to expect next? really don't like the idea of staying on blood thinners for too long but seems like that may be the case.
Would love to hear from some of you about your post op healing journey?
Lana 

Mitch Ywrote: Ashley W;

I would definitely get at least a second opinion, maybe even a third or fourth. Although it doesn't seem like it all the time, surgery is a huge deal. Getting an unnecessary surgery not only poses the general surgery risks (infection, internal bleeding, etc.), but it also could make matters worse! What if they go in to resect the rib and accidentally cut into the brachial plexus nerve system, or an artery, puncture a lung, the list could go on and on, causing more problems down the road. Even though the chances of these things happening is relatively low, you still have to factor them in. Yes, I am in total agreement that I would never want to go through everything I went through with my other arm if I got another blood clot, but your body is built the way it is for a reason. That first rib isn't there for looks. It serves a purpose (albeit a small one), but just removing that one little bone affects the rest of that area dramatically. I have noticed that my collar bone now sticks out further from my body because it doesn't have the support structure it once did. All the little muscles that are resected with the rib are gone now, and that load is now being distributed to other muscles that now have to learn how to handle the extra load, leading to quicker fatigue and cramping. My skin has been numb for a year now in that whole area of my chest. And these are only some of the things I have noticed that are different now.

A month after my first rib resection, the surgeon and I found out it failed. We tried three angioplasty procedures, but the vein would not open. He told me that he consulted with other "leading physicians" at a regional/national conference about my specific case, and he came back telling me that there was nothing that could be done, just to wait it out and hope that the collaterals would grow around the occluded section of vein and it would take years. I trusted my surgeon, but I could not accept what he was telling me. He is a very well respected vascular surgeon in the area. But I went and found a specialist who told me I had a pretty common case and vascular reconstruction would fix this up.

Basically what I am saying is a surgery is not a simple thing. It is SO hard on your body and there are far too many associated risks and potential risks that you can't even plan for. Also, I have found out that at the end of the day, I am the one that needs to be looking out for me, not my doctor. You need to do your homework and see different doctors to find what is best for you, and get numerous opinions. Just my thoughts. I hope all goes well for you!

Hi Lana,
I was on blood thinners for about 9 months total during my rib resection adventure. I also did not like the idea of long term blood thinners but they seemed to do the job for what was needed and I was able to go off them 3 months after my second surgery. I didn't really notice any difference between being on them or not but I know others have had a different experience. I also was not able to re-open the vein on my right side, even with 6 angioplasty attempts and now am on the path of rebuilding collaterals and restoring my body. I know everyone is different but for me the surgery was a huge success and definitely fixed a lot of shoulder issues I had. I had the exact opposite affect that Ashley W did, after the surgery my collar bones stuck out less and my shoulders seemed to sit in place much better. I think for me the first rib was pushing my collar bones out and pulling my shoulders forward into a bad alignment so removing that and letting them sit back was a huge help. And although I wasn't able to restore the vein on one side I still feel like the surgery was a good call because now I won't be crushing all the collaterals that will grow back between my first rib and collar bone.

I do agree with Ashley that you need to be the one looking out for your health and not just accept what any doctor or surgeon says. Everyone is so different and your the only one living inside your body and know how it feels, one thing I discovered through this is that usually what i thought was going on actually was what was going on. Hard to describe to others and make them understand how you feel, but I found listening to my body was one of the most important things I can do. Takes practice and patience but you do get better at it.

Anyway I hope that helps, feel free to reach out if you have any other questions and good luck with everything!

Katherine Rightwrote: Has anyone had the syndrome, had the surgery, went back post op and was taken off blood thinners? If so how did your body react?

I was consistent with the blood thinners for 3 months and was on an off them for about 2 months. When I got off them initially my superficial veins would start appearing and my doc told me to keep taking the blood thinners. After 5 months I stopped taking them after my doc cleared me and no sign of any superficial veins. 

Hello,
I feel (partially) like an intruder in this group because I am not an athlete at all. My physical prowess is limited to walking and managing my 15 month old grandson. However, I am ECSTATIC to have found this thread, because I am a strong proponent of the lived experience, and 24 years of nursing has taught me that medical information and patient experience are 2 totally different creatures.
I am currently in the diagnostic process for vTOS, which I've been convinced I've had for years. In addition to the pain, numbness, and heaviness in my left arm, the fact that my left hand would turn completely pale, deep red or purple was a clear indication that the problem had a vascular component. My left arm always feels like it's immersed in a bucket of ice water. I would also lose the radial pulse on the left side. Of course I was told that it was radiculopathy, or my favorite, anxiety. I learned of TOS via my own research for a cause for unilateral symptoms and pain in my ring finger! I was blown off by my Orthopedic doc, who said that I had scalene inflammation, but couldn't have TOS b/c it is "too rare". Thankfully, my NP ordered an US, revealing the subclavian vein occlusion. So, I am now on Eliquis and seeing a vein specialist and hematologist, both of whom immediately suspected TOS! Unfortunately, just to keep it interesting, I also have a grade 3 rotator cuff tear. My hematologist says the torn rotator cuff is the least of my problems... but she's not in constant pain...
For those of you who may have experienced both of these issues, do you have any recommendations on which to pursue first?
Thank you for sharing your stories. It's both horrible and wonderful to know that I am not the only one,  and that the FRR may not be a horrific experience. I'm trying to stay positive!
Best,
Tlove