Thoracic Outlet Syndrome, Rib Resection, Recovery Stories?

Hi friends! So just left my surgeons office; and believe it or not...he said in his 38 years he has never had a TOS patient have to get both sides done...until me...he showed me pictures of me left side from the venogram and compared it to a picture of my right side before they removed the clot at the venogram of that time and the level of compression is the same, so only a matter of time till this happens on the left; he consulted with 9 other surgeons at the practice and they are all in agreement that I need it....left side rib resection scheduled for August 9th....I cannot freakin believe it....

Ashley W wrote: Hi friends! So just left my surgeons office; and believe it or not...he said in his 38 years he has never had a TOS patient have to get both sides done...until me...he showed me pictures of me left side from the venogram and compared it to a picture of my right side before they removed the clot at the venogram of that time and the level of compression is the same, so only a matter of time till this happens on the left; he consulted with 9 other surgeons at the practice and they are all in agreement that I need it....left side rib resection scheduled for August 9th....I cannot freakin believe it....

Having TOS on both sides is fairly common from what I have heard, Ashley. Stinks..... Stay positive and remember How much better your right feels now post surgery. This will pass.

I am curious, did he look at your left side for your first surgery? I have heard from a few people who got both taken out arouind 2 weeks apart so they could just get it out of the way.

No he did not look at the left with my first surgery. At first they were even saying we don’t need to worry about looking at it...but glad they did I guess haha...we’ll see lol

Ashley W wrote: No he did not look at the left with my first surgery. At first they were even saying we don’t need to worry about looking at it...but glad they did I guess haha...we’ll see lol

interesting I saw three surgeons before my surgery at all three of them looked at both sides..... Good luck on your next surgery

Thanks! I’ll keep y’all posted on my progress...WOMEN: for BC; basically my only given option was the Skyla IUD; said it has less side effects than the copper IUD; combination bc pills are out of the question for life; he said mini-pill is very ineffective and he almost never prescribes it. So that was my right experience if any of y’all are wondering what may be in store/suggested

Hey Ashley,

If it were me I would not treat an asymptomatic side. It's not 100 percent that your other side will clot. Maybe get a second opinion and/or think about it a bit longer?

Of course I'm speaking from an experience of a surgery that didn't work - my L vein didn't stay open and actually I got a new DVT (in the same vein, just lower down the arm) 15 days ago - just 7 weeks after stopping Lovenox. So, I'm back on it. Apparently, while 6 months of anticoagulation is enough for most people, it was not long enough for me. I think I will stay on it until my collaterals have taken over completely and the arm is no longer swollen - and thus the risk of re-clotting is reduced.

Staying off of estrogen for life sounds like a good idea! I plan to do the same.

Ashley

I’ve considered not doing it; but at the same time I guess it can’t hurt anything? I just feel like if all the surgeons are in agreement I might as well; I’m not a doctor and as much as I do not want this surgery again I do not want another clot more. I’m so sorry to hear you got another DVT....are they saying the blood thinners are enough to take care of it or will you have to do thrombolysis? 

Exercises. So I don’t know what everyone else does for their own workouts; but once my physician cleared me to workout after my rib resection with his advice being “ease back into it and let pain be your guide” ive been slowly adding back in certain exercises. If you are recovering, here are some that I would NOT recommend trying for awhile (I am about 8 weeks post op):
1. Side planks —I attempted this and it seemed to put too much strain on my affected shoulder, may have been ok but I didn’t continue
2. Tricep Dips—my lats said NOPE!! I got halfway through one rep and it felt like it was pulling so I stopped immediately.
3. Seated chest flys with cable. I did not think doing bench press was a good idea, so I thought this one would be a suitable alternative since the movement does not place the arm in a position that causes vein compression. The actual movement felt fine, however the next morning the surgery site was SORE and I had the surgery 8 weeks ago and I did about 1/2 the weight I was doing pre-TOS diagnosis

Exercises that have been fine/actually seem to help recovery:

1. Regular Planks
2. Bicep Curls
3. Tricep pull downs with the rope
4. Squats and deadlifts have not given me any problems mind you I’ve been doing lighter weifht
5. Single armed seated row
6. Rear delt fly
7. Side shoulder raises at an incline—just do not bring the arm too far up and use very light weight

Have not attempted skull crushers and I won’t since that puts the arm in a state where it’s compressing the vein. I have not done any “pushing” type movements either and don’t plan to attempt anytime soon. Especially since I am getting the surgery on the left in a month and don’t want to aggravate the vein by doing overhead movements.

This is just what seems to work for me and just wanted to share for anyone recovering who was itching to get back into working out like I was lol. Just wanted to share what’s working for me!

Ashley W wrote: Exercises. So I don’t know what everyone else does for their own workouts; but once my physician cleared me to workout after my rib resection with his advice being “ease back into it and let pain be your guide” ive been slowly adding back in certain exercises. If you are recovering, here are some that I would NOT recommend trying for awhile (I am about 8 weeks post op):
1. Side planks —I attempted this and it seemed to put too much strain on my affected shoulder, may have been ok but I didn’t continue
2. Tricep Dips—my lats said NOPE!! I got halfway through one rep and it felt like it was pulling so I stopped immediately.
3. Seated chest flys with cable. I did not think doing bench press was a good idea, so I thought this one would be a suitable alternative since the movement does not place the arm in a position that causes vein compression. The actual movement felt fine, however the next morning the surgery site was SORE and I had the surgery 8 weeks ago and I did about 1/2 the weight I was doing pre-TOS diagnosis

Exercises that have been fine/actually seem to help recovery:

1. Regular Planks
2. Bicep Curls
3. Tricep pull downs with the rope
4. Squats and deadlifts have not given me any problems mind you I’ve been doing lighter weifht
5. Single armed seated row
6. Rear delt fly
7. Side shoulder raises at an incline—just do not bring the arm too far up and use very light weight

Have not attempted skull crushers and I won’t since that puts the arm in a state where it’s compressing the vein. I have not done any “pushing” type movements either and don’t plan to attempt anytime soon. Especially since I am getting the surgery on the left in a month and don’t want to aggravate the vein by doing overhead movements.

This is just what seems to work for me and just wanted to share for anyone recovering who was itching to get back into working out like I was lol. Just wanted to share what’s working for me!

As we (at least I did) much earlier in the thread, I would highly recommend not doing a number of these exercises until much much further down the line, and starting with other exersizes that target specific muscle groups weight that I am sure you would scoff at. You want to regain proper muscle recruitment and function before you load the system and "teach" certain muscle groups to be dominant causing imbalances. I do not really power lift, but do use quite a bit of weight for my specific PT exercise and to this day (2 years post opp) if I overload the weight I get jacked up.

I cannot emphasize enough to take things slow after your surgery, go see a PT with experience treating Athletes with TOS, and very gradually ramp up activities. To be completely honest, I am astonished you were trying any of those exercises 8 weeks post opp, even with 1/2 of your normal weight. It takes time for all of the scar tissue to heal properly and for nerves to settle down and work properly, otherwise you run the risk of muscle groups not healing correct and other muscle imbalances happening equaling more injuries down the line.

I am not trying to be a dick or say I told you so, but i would recommend taking things a lot slower than that to anyone else out there who comes across this thread.

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!

Ashley,

First, I agree with Mitch 100 percent!

Yes, just blood thinners no thrombolysis.

Ashley

Going through my ELDOA trainer certification course and learning lots about the spine and muscular function around and behind it. While there are a million things I could write I will just share the most important thing I have learned specifically relating to rib resections. It may seems obvious but never crossed my mind.

The ribs help keep the spine in place. Given that I or any of us here with rib resections are missing a rib on one side there are plethora of potential issues that may arise.

1. Scoliosis of the upper thoracic and cervical spine. There is no rib on one side, therefore the spine will definitely lean or push to the open space

2. Torsion. Given the rib is missing the opposite side is working twice as hard to try and keep the spine in line. I have noticed this a lot in recent months as my laft trap, rhomboid, and cervical spine are trashed. There is a lot of tension and contraction on that side.

What about missing the first rib on both sides? 

Also, my rib resection they only took it out in the front, not the back, I imagine they will do the same on the left side...

Hi Everyone,
Anybody here that had a surgery for neurogenic TOS? I tried PT and acupuncture. PT  was mostly about stretching and strengthening exercises. I had a bad fall which ended up with SLAP tear in my shoulder. I can tell the shape of my shoulder changed, but doctors don't see it or just ignore it. Eventually I developed TOS symptoms. I tested negative for venous TOS, EMG shows a possibility of  neurogenic TOS. I am in a lot of pain.

Ashley W wrote: Also, my rib resection they only took it out in the front, not the back, I imagine they will do the same on the left side...

I would recome getting another opinion on that method. There are several negatives that I was made aware of prior to surgery for only pulling half a rib out. 

If the rib is missing on both sides, I'd imagine there would be quite a bit of instability around C7, T1, and T2. Maybe it would pull to whichever side is stronger dominant? But it would probably be very important to work on the vertebrae and muscles directly above and below C7/T1.

Thank you. I really appreciate everyone’s thoughts and input. I will bring these concerns up to my surgeon. I’ve considered a second opinion, however, he is one of the top surgeons in the country for this surgery, trained at Johns Hopkins, etc. and I feel like a second opinion would be from a surgeon with less experience-not to sound rude...I don’t know if anyone on here is religious and if you aren’t this certainly isn’t said to make anyone uncomfortable or offend anyone, but I have spent a lot of time in prayer over getting a surgery on the opposite side and have had others praying and I’ve asked to feel at peace with a decision and I feel at peace with getting a second surgery. 

The best doctors aren't the ones with the most degrees or certifications or qualifications. Given he didn't look at your left side to begin with it doesn't sound like he's very thorough a second opinion is not a bad idea. try to do it all over again I would do my best to avoid surgery.

Hello! I am a 29 year old female who had a first rib resection done almost 6 weeks ago and am recovering fairly well. It all started when I woke up one day with chest pain (thought it was a pulled muscle) long story short I had a blood clot in my subclavian vein and had to get things moving fast, had my clot busted, had the rib resection 1 week later, day after surgery had my vein ballooned and just went back a week ago for my post opt and the clot is gone!! I'm doing ok but every once in a while I'll still have chest pain, anyone else on this thread deal with any chest pain at all? I will say before the diagnosis the chest pain was so bad I almost went to the emergency room a few times but worked through the the pain, I'm guessing I could have had a pulmonary embolism but not sure, so just wondering about chest pain for anyone? Also should I be seeing a physical therapist?

Hi there! I am 2 months post-op from my rib resection; my doctor said PT only if I have issues with limited movement which I haven’t. But some will argue to get it regardless...I would ask your physician. I had some chest pain prior to my clot being removed but I think mine was more muscular; if it’s concerning and bothering you I’d mention it to your physician; one thing this whole experience taught me is if something doesn’t feel right then say something!! I hope the rest of your recovery goes well!!