Thoracic Outlet Syndrome, Rib Resection, Recovery Stories?

I had veinous TOS, no cervical rib, and had a 1st and 2nd rib resection on one side. So your results will vary.
1. Would highly recommend someone who is qualified and regularly does the surgery, best case somebody who does this surgery on athletes. Could not recommend enough. This looks to be a big factor into a full recovery. The other is doing the surgery early.
2. My surgery was through the armpit, which may not apply to you due to access issues. Nerve damage at the incision site is normal and not bothering. Mine cleared up in ~1 year.
3. My doctor did not recommend PT. I didn’t need it either. Results vary based on person.
4. Pain AFTER recovery shouldn’t be bad. Any surgery is incredibly painful and not easy or painless at all. Recovery times vary based on person.
5. Depends on if they need to remove a scalene muscle for your case. Other than scar tissue, I didn’t notice any difference in my neck

Nora C wrote:

Hi Kyra, it seems like lots of people on this thread are in the area and may have suggestions. I saw Dr. Rafael Malgor at Anschutz in Aurora and really highly recommend him. 

Hi Nora, I'm new to this site, so I don't know if you will get an email when I send this.  My daughter (20) is also working with Dr. Malgor.  She likes him as well.  I was wondering how you are doing 2 years later?  VTOS surgery is scheduled for July 9, 2021.  You're previous posts have made me feel good about her working with him.  Unfortunately, there is a post from a patient of his on the FB group who had to have a redo by Dr. Thomson after Malgor did the initial.

Thank you!  Mark

Hello. (Maybe this helps someone else)

Here is an update. I went to see the head of vascular surgery at the medical university near me. This was my second visit to her. I wanted to take my time before rushing into surgery. I feel better after the visit. Apparently they have a lot of pro athletes that seek them out for tos. The drs really try to defer surgery since it’s often poor outcomes  (especially for neuro tos) and high risk. 

The day I was there several neurology and orthos were in town from NY and CA at the university for a conference. Most of these surgeons had pro athletes as patients and were pro team doctor/surgeons. They had assisted the more well know tos vascular surgeons on tos cases. My dr is a vascular surgeon, so she had just shown these other drs around, so she called them over. They were very nice. They examined me and were very kind. They said my case was a catch 22, if no neuro symptoms then highly likely to be 100% success rate for my recovery. They did share scar tissue can form from removal of extra cervical rib and cause some nerve issues. But in my case it is really clear. The extra rib cuts off blood flow when I raise my arm. I have had this issue since childhood and it’s likely my symptoms are worse now bc of a car accident and my shoulder tear. I am also more active.

So they don’t like to recommend surgery, but in my case it’s likely necessary. The arm movement causes that 4 inch of extra rib to compress the vein/artery. They called to their tos vascular colleagues and the tos experts all said the same thing remove the extra rib. Most shared my case would be straight forward, until they got in their no one would know if it’s a 1 hour surgery or 3. They said since I didn’t have clots that was better news and to go forward sooner than later.

One of the neurologist took me aside and shared that while risky, the case is straight forward. He would do it here because usually the tos experts often see more complex cases of neuro involvement and or no obvious extra rib and mine is straight forward - the extra bone is causing compression. He and the other tos surgeons felt that I would not have a better chance of success with a tos expert vs the surgeon at this hospital who has done 15. In other words my outcome or complications would be no different with where/who did the surgery.

They all agreed my arm needed to be kept under my shoulder until I had surgery since the rib cut off blood flow. They said I could avoid surgery but it would mean limiting my arm movements to avoid potential forming of clots. 

I may go with surgery here. But I still may call one of the tos experts and see if I can get a 2nd look. 

But overall I feel much better with that extra info.

Zoë Ryan wrote:

(sorry for the essay)

I had a right first rib resection about 3 and half weeks ago for neurogenic TOS . Just a little background: it was quite a journey getting diagnosed, approved for the surgery, on top of constant struggling with my insurance company but I finally got it scheduled. My symptoms included searing pain from my neck, under my collarbone (where the worst pain was) and down my arm to my fingers as well as occasional numbness. This had been going on for years and I had actually had a biceps tenodesis surgery because that's what a shoulder specialist though it was (obviously it wasn't). One day as I was hanging clothes, my arm went completely numb and just fell limp at my side which is when I went to a nueorlogist who directed me to a Thoracic Specialist at NY Presbyterian/Columbia Medical.

Anyway, when the surgeon went in he said it was much worse than he had anticipated as everything was so tightly compacted together in the area that he ended up taking out the entire rib (some people only get a portion of the rib removed) a few muscles and ligaments too. I'm not going to sugarcoat this because we're all adults here... no one could have prepared me for the kind of pain I felt coming out of surgery. Now, I'm not new to pain (I've had 4 previous surgeries, broken numerous bones, etc...) but it was so bad that I could not move any part of my body. They could not lift the back of the hospital bed at all as I would scream in pain at the slightest movement. I was on the highest dose of IV dilauded and even with that, I couldn't eat, sleep, breath, I could barely blink without pain. I would wake up every hour screaming

Even though you are normally sent home the next day, I spent 9 days in the hospital. As it turns out, I had multiple post-op complications. It started with a hematoma (an abnormal collection of blood outside of a blood vessel from a burst capillary, blood vessel, artery, etc..) which was compressing my lung making it very painful to take in air. Then I got pneumonia in my lung that was making it very hard to breathe. And then the kicker, I had a Pericardial Effusion (excess fluid between the heart and the sac surrounding the heart). Now normally, this isn't a big deal and sometimes doesn't have any harmful effect on you but because my body was in such rough shape, my heart was effected. 

I would go into tachycardia (heart beat over 100 bpm) every time I stood up. Every time I would stand up right my heart rate would spike from 80 to about 150 in a matter of seconds. I was seen by about 10 cardiologists at the hospital who couldn't agree on a plan to combat this as they weren't sure if it was being caused by the fluid around my heart or something else. I had so many tests done within that week and still no concrete answer.

They finally decided to drain the fluid around my heart with a chest tube but then decided against it at the last moment as I was in pretty rough shape and it was too risky because they weren't sure how thick the fluid was and if it would drain well. They then told me that I would just have to take it easy and that I can't be alone as of now as they're not sure if my tachycardia could cause something more dangerous. To this day, every time I stand up my heart rate skyrockets.

I'm only 20 and will have to see a cardiologist twice a year from now on because of this mystery.

There's still a lot of pain but nothing like before. Half of my arm is still completely numb from the nerve damage. There is still some fluid around my lung which makes it a little harder to breathe but it is slowly clearing up. Every time I cough or sneeze, it feels like someones taking a bat to my rib cage.I realize I'm only about a month out of surgery so nothing is set in stone as of now. I expect (and hope) a lot of these symptoms will subside eventually. 

Even though this process, surgery and recovery was an absolute nightmare, it will all have been completely worth it if it can get rid of the pain I was experiencing before. The goal of this post is not to scare people away from this surgery, it's to let you know that it's not a black and white procedure. Granted these complications only happen to a very small percentage of people, they can still happen and while the post-op pain was brutal, it's not forever and I would do it again if I had to. 

Side note: thank you so much for creating this forum. It feels really good to have people know what living with TOS is like and to not feel so alone dealing with it. :)

Zoë - POTS is often seen after TOS and cervical spine surgeries. POTS is so hard for docs to figure out and can be super gnar to deal with, but again so common with these surgeries. I know you posted a while ago so I hope you are better! If not I hope looking into POTS helps!

Linda Kyle wrote:

I am 60 and have had this for decades but after the surgeon was done that was it. 10 times worse than when I started. I thought this was the answer and for weeks after both left and right TOS, pec minor tendon release, no one will help me. So I get the fact it was neurovascular and had extra scalene muscle most people don't have, neurovascular TOS looked like it was working so did the right side due to subclavian artery compression. Still left to the wolves. Every time a surgeon does his thing, that's it. But now my hands are discolored again and swelling and I can't get past the "assistant". I think the pain mgmt doctor was not the one he would have referred me to so I can't get through to him I will never implant something in my spine when there is obviously some adhesion or nerve damage but at least he can do is run some tests. I mean I am sure if he had to do surgery again he would probably pay attention but you are so young I feel bad for you. I don't know what I will do but am "burned" from middle of thorax to under my chin and across my upper back but only after the second surgery. I feel like I was made a guinea pig and I have to just wait it out. I will use Patients without Borders and leave the US because I can't get a doctor that doesn't want to run up the bills and when they get all they can they dump you. Try holistic measures, CBD oil that is cold pressed and frankincense or you will never be the same if they get you starterd on Lyrica or neurontin. Although my upper body strength hasn't been there half my life I at least had a life. Good luck to you. Wanted to add watch the drugs. Most will put you on HBP, anti depressant like Cymbalta for "Pain" and they all cause horrible side effects. You had a bad deal though. There should have been a drainage tube put in before surgery. They should have kept it there so lymphatic fluid could drain properly. You would never have had the pericardial fluid build up like that.Most thoracic surgeries always put a drain tube in to avoid a second surgery. So very sorry you had to go through that. I know numbness bothers you but feeling the nerve pain is worse. Just look up all drugs, where they are manufactured, what fillers they use, and if you have to take three to offset side effects from one. There are many natural products but If it were not for the vascular issue I would not have done it. They never see people that have gone through this much pain this many years with so many wrong diagnosis' but I just want help. I don't want anything but relief. I would like to not drop everything or feel so spastic so you have youth on your side but get second opinions. All your doctors look up Dollars for docs. I was desperate and couldn't work and now I will never be able to even ride in a car. I don't want to see the same for someone as young as you. I have a strong pain threshold, natural childbirth, passed my share of kidney stones , but nothing compares to burning nerve pain that doesn't go away. See if you can get a cold ice machine. One was given to me and insurance rarely pays but I got it two days ago from a friend and it beats the leaky iceberg like ice packs. The tens unit only help so long and not for chronic pain. Later on try a muscle stimulator as it will help fluid move and keep you in shape but ask your doctor first. I got a cheap one At a drugstore and still can't get one ordered for me that's decent but 10 weeks out 2nd surgery and no return calls so I assume it won't hurt but I'm a bit of a cynic at my age and have seen too much. Keep reading med journals and if interested I will share some natural remedies that may help. 

Linda - have you tried seeing a top TOS surgeon? There’s only 7 in the US. Donahue at Mass General does redos as does Thompson in St. Louis. Sometimes normal thoracic surgeons do this surgery and will make the mistake of not taking out the whole rib or don’t know about fully decompressing. Scar tissue can grow on anything left behind and ribs can grow back in bad ways! Dr. Pearl in Texas is also great. 

Hi all, 

I had first rib resection 2 weeks ago for vTOS in Melbourne. I've noticed while going on short walks my arm still gets discoloured (purple) and a little bit swollen. Not as much discolouration as before surgery but my movements are still limited. Currently on eliquis.

Just wondering if anyone else experienced this, and if that means they'll have to put a stent in? Or does it take a while for symptoms to go away? The surgeons wanted to hold off until after they see what my ultrasound would like like (in 2 weeks). During surgery they found there was lots of obstructions but the subclavian vein itself looked fine, which had a blood clot in it 2 years ago, so they didn't put a stent in during the operation. 

Hey Jody, I'm personally not sure if that's normal or not as I had a stent put in a day after my rib resection as my vein collapsed. I didn't really have any swelling following that.
Hopefully some one replies soon who had a similar experience x 

Jackson J wrote:

Hey Jody, I'm personally not sure if that's normal or not as I had a stent put in a day after my rib resection as my vein collapsed. I didn't really have any swelling following that.
Hopefully some one replies soon who had a similar experience x 

Hey Jackson, thanks for replying back! I'm going in for a venogram +/- stent next week. Hopefully no more symptoms after that.

Jody S wrote:

Hi all, 

I had first rib resection 2 weeks ago for vTOS in Melbourne. I've noticed while going on short walks my arm still gets discoloured (purple) and a little bit swollen. Not as much discolouration as before surgery but my movements are still limited. Currently on eliquis.

Just wondering if anyone else experienced this, and if that means they'll have to put a stent in? Or does it take a while for symptoms to go away? The surgeons wanted to hold off until after they see what my ultrasound would like like (in 2 weeks). During surgery they found there was lots of obstructions but the subclavian vein itself looked fine, which had a blood clot in it 2 years ago, so they didn't put a stent in during the operation. 

Hi Jody, if they didn’t repair the outside of vein than this seems like it could still be possible. With my surgery they went in through the chest and scrapped off all the scar tissue on the outside of the vein while removing the rib, just a stent isn’t enough. Since it’s the rib and clavicle that create the problem, they produce the scar tissue when you raise your arm on the outer part of the vein creating a constriction on the inside of the vein and eventually the blood clot. Not sure if you did this, but It is important to get an opinion from a doctor who not only removes the rib but can look at the outer part of the vein and fix that. Hope that helps.  

Hey guys, I never had any 'scar' tissue removed from my vein, they just trimmed the muscle (1 finger width) either side of where the rib was removed and put the stent in and expanded the vein where it had collapsed/was narrow. Also forgot to mention in regards to my 'lack of swelling' - When I lift weights my left arm (clot side) still pumps up quicker with blood than my right arm but that's apparently because one of the lesser veins near my elbow is occluded and blocked off from where they went in to remove the clot (which is normal/fine apparently).  

All the best with your stent! Once you get off the harder blood thinners after about 3 to 6 months you should go down to 1 low dose aspirin daily, which is easy as it doesn't effect your diet/alcohol intake   

Hi guys,

I've developed a new symptom over the last few days, I've been experiencing quite a bit of pain in my hand that comes and goes every few minutes and lasts all day, panadol and ibuprofen haven't helped it much. Anyone experience anything similar? I'm hoping this isn't due to post surgery scar formation compressing a nerve/vein. I don't think its anything urgent so I'll probably bring it up to the doctors when I go in for the venogram +/- stent. Frustrating stuff, was really hoping I would be back to normal after surgery!

In terms of scarring outside the vein, the surgeons were pretty confident my subclavian vein looked good, hence why they opted for no venogram after surgery. 

Hey Jody,

I never had any pain in the arm itself, I guess you'll have to ask the doctors next week... and hopefully it isn't nerves   . I did however have pain in my upper back near the shoulder blade on the operated side when I walked or was standing for longer than 45 minutes or so. This was caused by the opposing muscles in my back of the neck muscles that used to be attached to the rib they removed. Basically just my body learning to balance my bulbous head without those neck muscles fully attached haha...felt like some one pressing a screw driver into my back... very annoying and immediately went away if I sat down and supported my head on a couch or even lifted my arm above my head..this went away after a couple of months. Also had a tight left trapezius muscle due to the same reasons. 

I had the first rib resection through the armpit and also had swelling and discoloration after the surgery. The surgeon said he saw 'the vein expand back to normal size,' but it turned out that the vein was still occluded. They tried a few operations to pass a wire to put in a stent, but were unable to even pass the tiny wire from either size of the vein (proximal or distal). The doc told me I would have to wait this out until new veins developed around the occlusion because he was uncomfortable with any vascular reconstruction even though he was a vascular surgeon. I opted to see a specialist who went in through the chest and found the previous surgeon did not remove all of the first rib. I also had the occluded section of vein removed and a cadaver vein sewn in. At the same time, they also did a venogram while I was still under to make sure the surgery was successful. I have had zero swelling and no movement restrictions for 5 years.

A few things I learned along the way:

• I did a lot of research on stents and found that the subclavian vein is not a good location for them, due to the constant movement of the collar bone (and associated muscles) and the tight bends that the vein has to make. This was as of 2018, so unless they have made some serious leaps and bounds in stent technology, I would be cautious. The normal docs will recommend a stent, but they don't always have your future athletic goals in mind.
• Having a venogram during surgery makes a lot of sense to me. This way, the surgeon can see if the surgery was successful while you are still out and on the table, rather than coming back in several weeks for another operation just to see if the surgery did work.
• See a TOS specialist right away. I wasted a lot of time going through several doctors who said they had some experience with TOS, but only saw this a handful of times a year. By the time I saw a specialist, I needed more invasive surgeries. Less invasive surgeries do indeed work, but time is a huge factor. I cannot stress this enough. I had to travel halfway across the country, but it was the best decision I made. Yes, it created several challenges, but seeing a doctor that only works with TOS will be more than worth it.

Hey Mitch,

Thanks for the insight. I think they were supposed to do a venogram after my surgery, but I don't think they ended up doing one and just tested my arm maneuvers after the surgery, and were happy with the outcome. When they booked my venogram appt for next week they said they suspect maybe its a vein that might've been at a different location that they might've missed i.e other side of the rib? I think the team is surprised I still experience discolouration post op cause they were pretty confident.

I originally live in Canada, came here for the procedure, so after this is done I plan to look for a TOS surgeon in Canada for a second opinion. 

Hey all,

In case anyones interested or find this forum down the line: I went in for venogram + venoplasty yesterday. The surgeons ended up doing a balloon valvoplasty in my subclavian vein as they found residual scarring + webbing in the area (hence my post-op symptoms). I suspect they opted for this and not a stent maybe as the prior comment stated about how stent's might not be the ideal first line treatment due to the awkward location of placement, especially as I am a young and active 26 year old. I will be following up with another ultrasound and chat to my surgeon next week to make sure the balloon valvo is doing it's job. 

Thanks for all your inputs! It's been great chatting to people with similar experiences. 

Glad to hear they found the cause and implemented a fix! Hopefully this is all you need. In terms of stent inconvenience, I still work a physical job as an electrician and exercise like I did before the stent and do a lot of overhead work like barbell shoulder press, olympic log lifts, pull ups, chin ups, lat pull downs etc.. In the 3 or so years that I've had the stent I haven't noticed any negatives (touch wood)... apart from damage to my pec from my original operation.. but that's not too bad. So I wouldn't freak out if you need a stent put in x
  

Jody - Glad to hear they were able to get that vein opened up and I hope it is reducing your symptoms. Keep us updated!

Jackson - I stand corrected on the stent placement! That's great to know you've been symptom free for with the stent. That is definitely a less intrusive/risky option than vascular reconstruction.

No worries Mitch! I just hope I'm all good internally too haha.. So far all the check ups have gone well. Maybe it's not a good place for a stent to be if your rib is still in place but they removed a good portion of mine and also determined it to be a "large rib". I'd imagine there's a lot of space for it to do it's thing without being impeded now. 

Hey guys! So I went for a final ultrasound and they found there’s still a tiny bit of chronic scarring in my vein next to the area they did the balloon valvo, so I still get some symptoms (only when I raise my arm) but I’d say I’m 80-85% better than before surgery. Not sure why that area wasn’t inflated as well, but since I’m not too bothered by it I didn’t dive deeper. Chatted to my surgeon the same afternoon and he said they’ve done pretty much the most they could. He didn’t want to put a stent in since I’m still young (26) and balloon valvo’s can be done as many times as I need in the future. That was their only reasoning. I trust the team so I’m happy with the outcome. 

Wow, I'm glad I found this! I have been dealing with vTOS for over a year and was just told today that I have to have yet another venogram with balloon angioplasty due to the scar tissue in my vein and have to go back on blood thinners. I did have surgery; and post-op my hand and wrist have always been a little swollen, but suddenly they're swelling again like they were prior to surgery. The problem seems to be that since it took 9 months from onset of symptoms to surgery, I'm told that my vein is just damaged. 

Thanks everyone for sharing your stories, it does help to know I'm not alone in dealing with this!