Thoracic Outlet Syndrome, Rib Resection, Recovery Stories?

Lanana Scovillewrote: 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 

Hi Lanana

I hope your post op is going ok, I am going through this process at the moment for VTOS it has been a eye opener to me and one that hasn't got much info, but i am glad i found this forum. It sounds like a rare condition, i am wondering how your operation has gone and who was your surgeon? i am from Canberra and seeking surgeons any info would be great thanks.

Hey guys,

Whats your ideas on options post rib-resection if the vein is still narrowed. I had the rib resection in May and then 2 weeks ago had an angioplasty as the vein was still not working...... going back for a scan in 2 weeks, feels like the vein has opened up a bit but still not 100% not sure if I should wait longer? or stent? or another angioplasty or collateral veins do the job (although does the subclavian vein have to be closed for the collateral veins to totally take over) still on blood thinners?

Lana

Amanda Elliswrote: Has anyone ever had success with chiropractic, acupuncture, or rolfing as opposed to jumping right in for the rib resection surgery?

I have venous TOS from a high velocity impact (hard snowboard crash) this winter. I think it compressed the thoracic outlet because I never had issues prior to the crash. A venogram confirmed that my first rib is squishing my subclavian. However I hardly have symptoms.

Lanana Scovillewrote:

Hey guys,

Whats your ideas on options post rib-resection if the vein is still narrowed. I had the rib resection in May and then 2 weeks ago had an angioplasty as the vein was still not working...... going back for a scan in 2 weeks, feels like the vein has opened up a bit but still not 100% not sure if I should wait longer? or stent? or another angioplasty or collateral veins do the job (although does the subclavian vein have to be closed for the collateral veins to totally take over) still on blood thinners?

Lana

I’m not sure on the full scope answer, but in my case, the vein completely clotted. I was told that I was beyond the option for a stent or any type of reopening, but, for most scenarios, the stents *can* be as risky/prone to failure as they are successful. But don’t take my word for that, memory is hazy and I’m not a vascular surgeon.

After a few months the collaterals seemed to have taken care of any blood flow concerns. PT and management of the postural root causes is still my biggest issue / key focus.

I Would be interested to hear the story of anyone who had a similarly full occlusion, but the opposite trajectory and saved the vein.

Brent Kellywrote:

I’m not sure on the full scope answer, but in my case, the vein completely clotted. I was told that I was beyond the option for a stent or any type of reopening, but, for most scenarios, the stents *can* be as risky/prone to failure as they are successful. But don’t take my word for that, memory is hazy and I’m not a vascular surgeon.

After a few months the collaterals seemed to have taken care of any blood flow concerns. PT and management of the postural root causes is still my biggest issue / key focus.

I Would be interested to hear the story of anyone who had a similarly full occlusion, but the opposite trajectory and saved the vein.

Samesies. Also same opinion on veins (also not a surgeon). Your body will/should figure it out if you take the right steps, also this injury really takes time and patience to heal from. It ain't an ACL tear that will have a pretty linear recovery. It will be up and down.

First 8 months was ROUGH. 5 PTs later I finally found someone who could help. Postural stuff and strengthening the right muscle groups for proper shoulder mechanics was my ticket. 3 years later I still have annoying junk, but it's all nerve related and wouldn't really say it holds me back.

Brent Kellywrote:

I’m not sure on the full scope answer, but in my case, the vein completely clotted. I was told that I was beyond the option for a stent or any type of reopening, but, for most scenarios, the stents *can* be as risky/prone to failure as they are successful. But don’t take my word for that, memory is hazy and I’m not a vascular surgeon.

After a few months the collaterals seemed to have taken care of any blood flow concerns. PT and management of the postural root causes is still my biggest issue / key focus.

I Would be interested to hear the story of anyone who had a similarly full occlusion, but the opposite trajectory and saved the vein.

I had a full occlusion, diagnosed 2 weeks later, and surgery performed 4 weeks later. In my case I was fortunate to fully open and save the vein. Based on the research, having the surgery after 6 weeks: "In only 50% of these patients was it possible to decrease the amount of clot with urokinase infusion. However, none could be completely opened." The conclusion of the article: "Conclusions. An early diagnosis (less than 1 month), expeditious thrombolytic therapy, and prompt first rib resection are critical for the best results."

https://www.annalsthoracicsurgery.org/article/S0003-4975(00)01151-6/pdf

I’ve been following this thread for awhile since the only real first hand experience of a relatively rare syndrome.  Mid April I had swelling and discoloration in my left arm and was immediately diagnosed with Venous TOS.  The following Tuesday I had my first venogram and angioplasty of the vein and rib resection end of May.  Post op ultrasound showed the vein had re-occluded, and a follow up ultrasound 3 months later showed some progress with collaterals, but still occulsion of the subclavian vein. I’m on Eliquis, and minus the cost, it’s actually been fine.

My question is for those of us where the vein didn’t immediately open, how’s your arm feeling?? Good days, bad days?  Some times I feel aches down my arm settling my hand, sometimes my arm looks perfectly fine, other times is redder in complexion than my right.  Sometimes the veins on my bicep are more noticeable.  I run and ride my Peloton a lot, so I’ve been pretty active through all of this and two boys under the age of 5.  I do not do a ton of upper body outside of body weight exercises, and burpees I’ve learned are a hard pass (then again, not a loss).

Kaitlyn, I’ve been living with an occluded vein for over a year now. The interventions were not successful in reopening it.

The affected arm is more swollen, has some distended veins, turns different shades of blue or red with activity, temperature change or position; that’s been stable. People say they don’t notice until I point it out.

The symptoms of discomfort have diminished and the activity threshold with which they come on has increased. I used to get discomfort when writing, now I can lift weights, etc, and symptoms are mild enough that am not really limited. I have modified the type of activity a bit in case the other arm is also at risk.

After a few months there was psychological relief that I could live with some mild symptoms, it was an easy decision not to proceed with another surgery, and life went on.  Hope that helps. Good luck 

Thanks Ben!  It makes me feel like what I’m experiencing is within three realm of normal.  I did call my vascular surgeons office and they want me to come in for another Doppler and follow up, so hopefully I will continue to see some progress with the collaterals. 

Hey guys, I've read all 13 pages of this forum and can honestly say that it's definitely put me more at ease knowing that there's more of us out there and hearing from each of you has been really beneficial for me.
I'm a 34yo Australian who is 3 weeks post op of a rib resection/stent (I'll summarise my story below as briefly as possible as I know no one likes a long message lol, bottom paragraph is my question if you don't wanna read it all).

- Left arm swelled up, turned red/blue and I had pain in the armpit (My left side pumped up faster than my right for years during workouts or working overhead as an Electrician...even tho I'm right handed, I guess that was the first indication of a problem) saw a Doc 2 weeks later, admitted to hospital and put on Heparin drip.
- Had a successful Thrombolectomy and Lysis and clots were removed from Basilic, Axillary and SCV in a 1hr session.
- Had a partial rib resection (between 1 to 2/3rds of the 1st rib) and drain installed.
- Everything went well, arm felt fine.. I felt fine, drain was pretty much empty so it was removed the following morning and then I had a golf ball sized swelling pop up on the wound site (infraclavicular incision) that night which felt like it was putting a lot of pressure on my chest and interfering with breathing so I was taken off of Heparin in fear of internal bleeding.
- A few hours later the clots came back on the same side in the same locations.
- Went in for surgery the next day and re-did the Thrombolectomy (mechanical only) and had the rib resection wound side opened up, haematoma removed and drain installed (properly), vein was damaged from swelling (suspected) and wouldn't balloon from stenosis after 2 attempts so sadly they put a stent in.

I only have 1 question from anyone that has had the Infraclavicular Incision on their chest for the rib resection.. any answers would be amazing.. I'm 3 weeks out of surgery and I still have swelling near where the rib attached to the sternum/above collarbone, almost feels like half a golf ball or an egg cut long ways and placed under the skin.. swells more with prolonged walking (say an hr around a shopping centre). Did anyone have Swelling near the incision of their chest post surgery and for how long? I'm beginning to think they botched the job, again...lol ( I have an ultrasound in 6 days as my 4 week follow up, hopefully that can tell me if everything's fine).

Sorry for the mammoth post...

Jackson Jwrote:

I only have 1 question from anyone that has had the Infraclavicular Incision on their chest for the rib resection.. any answers would be amazing.. I'm 3 weeks out of surgery and I still have swelling near where the rib attached to the sternum/above collarbone, almost feels like half a golf ball or an egg cut long ways and placed under the skin.. swells more with prolonged walking (say an hr around a shopping centre). Did anyone have Swelling near the incision of their chest post surgery and for how long? I'm beginning to think they botched the job, again...lol ( I have an ultrasound in 6 days as my 4 week follow up, hopefully that can tell me if everything's fine).

Sorry for the mammoth post...

Weird, I actually have never heard of them going in through the chest before - only the armpit and collar bone/trap area. While I had it done through my armpit, I will say I had a shibby load of scar tissue for 4-6 months. Lots of me massaging the crap out of it, and when I could tolerate it graduated to a foam roller, lacrosse ball, and massage gun. Swelling with prolonged walking is not surprising either, I dealt with lots of swelling after any activity for a while. Its also not surprising to me it is "balled up" - you want to start massaging that and start to break it up

Good luck

Cheers Gumby!

Yeah they went in just under the collarbone and it travels diagonally towards my inner chest and stops about 70mm under the collar bone/first rib attachment (They cut in line with the muscle fibres.. who knows, It doesn't look 100% in line as it meets the mid chest.. maybe a few fibres got chopped and curled up lol).
Thanks for the fast response and tips!, I'll see if it's anything to worry about during my scan next week and if it isn't I'll start pummelling it out of existence      

Hello all. I am a 76 year old male, and I am almost 4 weeks post op from my first rib resection. It took three years for me to get to this point as my age prevented numerous doctors from even considering TOS.  My biggest problem so far is trying to find a comfortable sleeping position. It really hurts , The pain seems to be initiated whenever I put “pressure” on my back,,,either in my recliner or in bed. I have been told that is because my surgery was very invasive, and recovery will take a bit longer. I also find it difficult to walk, as I get pretty severe pain in both shoulders. However, I had the same problem before surgery. I do have TOS on both sides, but the surgery was performed on my left side. I may be facing another first rib resection on my right, but have to give it more time before that decision is made. The surgeon told me that my problem is not genetic, and was caused by an injury sometime in my life. He said that my first rib was very large and thick, requiring quite a bit of “work” to remove it and clean up the scalene muscle. Although I was very athletically involved during my younger years, (basketball, baseball, cycling, distance running, etc) I think playing golf after I retired may very well be the culprit.
I would appreciate any insight as to just how long before I can get past the more intense pain. Thank you all, and I wish the very best to anyone having to deal with TOS.. 

BTW.. I’m Al...using my wife’s Facebook ID

Lorraine Angelonewrote:

Hello all. I am a 76 year old male, and I am almost 4 weeks post op from my first rib resection. It took three years for me to get to this point as my age prevented numerous doctors from even considering TOS.  My biggest problem so far is trying to find a comfortable sleeping position. It really hurts , The pain seems to be initiated whenever I put “pressure” on my back,,,either in my recliner or in bed. I have been told that is because my surgery was very invasive, and recovery will take a bit longer. I also find it difficult to walk, as I get pretty severe pain in both shoulders. However, I had the same problem before surgery. I do have TOS on both sides, but the surgery was performed on my left side. I may be facing another first rib resection on my right, but have to give it more time before that decision is made. The surgeon told me that my problem is not genetic, and was caused by an injury sometime in my life. He said that my first rib was very large and thick, requiring quite a bit of “work” to remove it and clean up the scalene muscle. Although I was very athletically involved during my younger years, (basketball, baseball, cycling, distance running, etc) I think playing golf after I retired may very well be the culprit.
I would appreciate any insight as to just how long before I can get past the more intense pain. Thank you all, and I wish the very best to anyone having to deal with TOS.. 

BTW.. I’m Al...using my wife’s Facebook ID

I found that I needed my shoulder blade to be off the bed to avoid the pain. I created a layer of pillows with a gap so my shoulder blade could be suspended. 

Hey Mike,

The root of your lack of natural yawning it is most likely something more like this........

https://www.today.com/health/person-psychopath-yawn-might-help-you-tell-t40276

Only you can decide, or can you?

Mr. Draganic

All,

I’ve read most every post and I almost feel bad that I have found comfort in all of your shared struggles.  With TOS you almost feel alone.  No one understands.  Or so it feels.

My story and I will apologize in advance for the length:  currently 7 months post op

It started in December 2018.  I started having severe headaches and neck pain.  It was unexplainable, but it was constant.  After a few weeks I went to the family doc and was prescribed anti inflammatory and muscle relaxers.  They did nothing at all, so I was sent to a neurologist who ordered a brain and cervical spine MRI.  These came back normal.  I was given some meds for the headaches and over time things got better.  I thought that was it.  Ocassional headaches but for the most part I was good.

July 3rd, 2019 we go to a water park.  I know the ride where I hurt myself. By that evening I started to have pain in my back left shouder blade and my headaches and neck pain returned. My stomach was in nots. Chest hurt.  I toughed it out and made an appointment to see my general practitioner when I got home.  In hindsight the water slides likely created a whiplash type of effect that set my symptoms back into motion.....but at the time it was treated as my back shoulder pain and headaches were two separate issues.  More anti inflammatory meds, muscle relaxers, etc, chiropractor and physical therapy.   Nothing worked.  

October 2019 my family and I take a road trip to see a friend.  In total I’m driving close to 20 hours probably, which was absolutely horrible.  This was my first experience with pain down the left arm and my under arm area.  It was mixed with the already excruciating back pain and headaches.  Honestly it would have been smart to go to a hospital somewhere I kept thinking, but they’d found nothing so far and I didn’t want to ruin everyone’s trip.  The next week I’m working (I work from home) and midday the pain in my left arm returns.  This time worse than before.  The chest pain is there.  I never felt like I was having a heart attack, but that’s the one thing no one has checked so I figure I better go to the ER.  EKG, CT scan.  It’s all normal.  They said likely a pinched nerve causing the arm pain and maybe some reflex from all the meds causing the chest pain......again, treating them as unrelated.  She recommended an appointment with a GI and my GP.  

At this point I’m starting to think I’m crazy.  I’ve had MRI of neck, head, EKG, colonoscopy and ct of chest come back normal.  

Well I have my follow upcoming with my neurologist whom I am still seeing, so I just wait and see him.  This is the first time they think it “could” all be releated.  It 90% on the left so he thinks I may just have dystonia and the treatment is botox injections.  He wants to set me up for those, but also get a nerve conduction test done.  And just to be on the safe side an echocardiogram and cardiac doppler.

Fast forward to january 2020 I have the additional tests and the Botox injection.  Nothing.  All clear and the injections dont help one bit.  He said he didn’t a light dose so we will up the amount and see if it helps next time in April (have to wait 90 days).  

The next 90 days are more of the same and I honestly tried to be optimistic and higher dose would help, but just knew it wouldn’t.  Well,  April rolls around and it didn’t help one bit.  

At this point I’m totally defeated.  Completely.  I hadn’t done anything since that first round of injections but just wait on the second round I knew wouldn’t help.  I had decided maybe I’d just go see a pain management doctor and learn to live with it.  Had an mri done on my thoracic spine just to round out the entire back and of course nothing was found abnormal.  

Late April/early May 2020 in just waiting to talk myself into making an appointment with then pain management doctor, but life has to go on.  My wife and I worked out in the yard all one day on a Saturday.  It actually wasn’t terrible surprisingly, but we did a lot of overhead stuff and a few days later my chest pain was the most significant it has been and a few days later my hand turned purple.  The next day the arm pain was incredibly bad and my hand turned oriole again.  I couldn’t get anything out of a kitchen counter without pain.  We are in full on Covid season so I made an e-visit with my doctor and send him the pictures.  It was at the point he said, after a year and a half, you may have thoracic outlet syndrome.  

So to recap.....I’ve had an MRI of my lumbar, thoracic and cervical spine done.  Brain mri.  CT scan.  EKG. Echocardiogram.  Barium swallow.  Cardiac doppler.  Colonoscopy.  And an endoscopy.   And it took a purple hand to tie it all together.  

He referred me to a specialist who sent me to a specific therapist for 6-8 weeks.  It helped somewhat until we tried to do anything overhead, especially if it was waited.  This all but confirmed to the surgeon it was TOS.  So here I was with a possible rare condition but an overwhelming sense of relief at the same time.  Is this it, finally?  So this surgeon didn’t actual perform this particular surgery.  It’s to complex and he wanted to send me to a TOS specialist.  I appreciated the honesty.  

We are now I believe in early August 2020.  At my appointment this physician did a series of tests in the office and by the end of them here successful flared me up.  I was hurting.  He thought I was a candidate for surgery but first wanted to try a few nerve blocks in the scalene and pec minor.  This is for diagnostic purposes, not expected to give lasting relief.  The need for surgery was confirmed and I scheduled surgery for 9/15.

I had part of my first rib removed and some scalene muscles, as well as some built up scare tissue.  The subclavian artery and nerves were completely encased.  Surgery was the only solution for me.  I almost immediately felt relief snd started therapy at two weeks.  

I said almost immediate relief and that’s true, but it didn’t stay that way.  Recovery has been long. Not terrible and not abnormal, but tough.  I didn’t therapy for 4 months.  My range of motion is now pretty great.  I have random shots of pain down my arm but that is supposedly normal.  I also have pains in my back still, which he said would take awhile to heal, especially with my profession calling for being on the computer all day every day.  The only real thing that concerns me at this point is right under my clavicle, where the rib was removed, I get sort of a throbbing feeling.  Mostly at night when lying down.  Sometimes it’s ok, and sometimes it’s really uncomfortable.  He didn’t seem to terrible concerned though and apparently some studies show it’s up to two years before some of that goes away.

Earlier I said it was 90/10 on my left side remember?  Well over the course of rehabbing my left my right to start to other me some.  My surgeon did say that may be the case given I had some some symptoms earlier.  He said the therapy either makes it better or worse.....well worse for me.  So that’s where I’m at.  Contemplating surgery on the right before it gets as bad as the left did, but also while the left isn’t yet back to normal.  Which of course answers the question of whether I’m glad to have gotten the surgery.  Most definitely.  I feel much better.

Typing that all out (sorry for any typos) was almost therapeutic.  I wish I’d have found this thread two years ago.

Hi. I am new to this group. Would appreciate feedback and dr reference.

I have the extra cervical rib on the left that has bothered me since a child. I have muscular pain like I am trying to force muscles to tear thru (sorry for description) that “extra” bone when I turn my head to one side. All drs through the years said to leave it alone. However after 2 car accidents and even prior it is hard to turn my head, swim, bike ride (leaning on handle bars), without constant neck pain. Apparently after an ultrasound I have arterial tos, but no clots. It occurs when I raise my arms most blood flow stops, however a small amount of blood still goes thru the vein.  They think I have had it all my life, but the dr didn’t do any ultrasound until now. 

Now I want my life back. I want that extra bone out. I have tried everything prior to surgery.

Also after reading about blood clots I really want to avoid that potential outcome. I am active enough to see that potentially coming my way. Even if I stopped all activity, its pretty symptomatic. 

I honestly believe I will wake up a new woman. Mostly bc I can feel that extra bone and all the muscles pulling on it. It’s like a big bone spur you feel constantly. Its very prominent, so no denying it’s an extra cervical rib..

I have concerns, but I am not sure if they are good concerns or I am over thinking it.

First I live in Arizona. I saw 2 vascular surgeons here. Both have done about 8 tos surgeries bc they are not that common. But they said my case is straight forward, but even then they were not keen to rush me into surgery bc well, it surgery. So I appreciate that they were conservative. However both said they would do it if I really wanted it.

1. Does anyone know a great surgeon specialists in AZ? Mayo Clinic is here, but my insurance doesn’t work there and their Tos dr has only done 2 surgeries. Lol.

2. Do you wake up/end up with permeant nerve damage? Both of my surgeons said it’s a possibility, but they never had it happen. They are using the superclavical incision.

3. Neither is prescribing PT after. Is this a warning sign Of inexperience ? I did call one of the 4 offices of the known tos surgeons and their assistant said for out of town people they don’t often require PT.

4. Both said pain won’t be bad at all.  ?

5. Wobbly neck muscles afterward?

Honestly part of me wonders if I should get new insurance eat the 8k deductible and go to a specialist in LA. But I know a lot of drs say any qualified vascular surgeon can perform this operation. Obviously I checked for malpractice before choosing a dr. I also know people in different states have to go with vascular surgeons in their area.

Thoughts? I appreciate the feedback. 

1. Idk one for Arizona, but I can recommend a very good doctor out of UCLA. It's a surgery worth traveling for a specialist imo. 2 surgeries is not enough you want someone who has done hundreds or thousands of them.

2. It's a possibility and they tell you that due to liability issues. I have a small area in my armpit I can't feel 4 years later, it doesn't bother me.

3. Idk why they don't prescribe PT. Mine didn't either but it was one million percent necessary.

4. Pain will vary by individual.

5. Yes and this is why you need PT

@Gumby boy king 

Thanks for the feedback!

1. Idk one for Arizona, but I can recommend a very good doctor out of UCLA. It's a surgery worth traveling for a specialist imo. 2 surgeries is not enough you want someone who has done hundreds or thousands of them.

did you travel?

who in LA did you use?

I was thinking of getting a second opinion from Dr. Gelabert in LA. 

yeah 2 isn’t enough. That was Mayo clinic in AZ surgeon. I declined.

I guess If you can’t travel you have to trust who is in your state. Weird.

I saw the head of vascular surgery at University of AZ medical school. She has the best google reviews and lots of them. She would bring in another vascular surgeon to help her. She shared some surgeons use different approaches and some medical centers focus on it, but the surgery is straight forward. It’s also not really that common even in the speciality locations. There aren’t many cases of true extra cervical ribs that cause issues. She knew more about it than I thought. She has done 20 in her 15 year career. She said you do everything to avoid surgery, but in my case if it’s bothering me that much and all else has failed then surgery is probably necessary. She also shared that in situations where there is truly an extra rib thats really noticeable and it cuts off blood flow the better the ”success rate” for a complete cure. 

2. It's a possibility and they tell you that due to liability issues. I have a small area in my armpit I can't feel 4 years later, it doesn't bother me.

I can live with no feeling, it’s searing pain or loss feeling in my arm I fear.

3. Idk why they don't prescribe PT. Mine didn't either but it was one million percent necessary.

4. Pain will vary by individual.

Makes sense.

5. Yes and this is why you need PT.

Is it a really bad wobble ? Prior to surgery did your dr say it would occur?

Wobble feeling is creepy. The surgeons said no it won’t happen, but I wanted to ask people who have gone thru it.