1.How was it right after surgery?
Right after surgery, (45 min in recovery) I was brought up to my patient room. I was given morphine very two hours on the dot, though the morphine wore off at about the one hour mark- which made it difficult to wait the extra hour! The surgery lasted just over two hours and it started at 345p. By the time 11p hit, I was ready to go to the bathroom. The nurse “spotted” me as I walked in and out of the bathroom to the bed, but otherwise I could do everything else on my own. My largest pain was in my left shoulder blade. They didn’t put me in traction while in the OR, but my shoulder blade was on FIRE! This made any sort of sleep impossible. I laid on my right shoulder with a pillow holding the left side of my back at a 45 degree angle or so. PLUS- they come in every hour to check vitals and what not. No sleep at all.

2.What was it was like when you left the hospital?
I left the very next morning by 1030. Not even 24 hours in the hospital (incl pre-op!) I didn’t have a drain or pump for my lungs, and the surgeon thought I was strong enough to leave. I didn’t suffer any nausea until this morning from the morphine, so I sent my husband to get my Vicodine from the pharmacy and had the nurse take my IV out. Husband came back, took the Vicodine and half an hour later I was in the wheelchair out the door! Had a big fluffy pillow to rest my arm on for the short ride home. Husband was a careful and considerate driver. Did get very woozy tho, be mindful of that possibility.

3.What was it like getting around?
Getting around on Vicodin was troublesome. I took Vicdodin for only the day I was discharged and then quickly switched to ADVIL during the daytime and Vicodin for the nighttime/sleep. This was I could get around without getting woozy.

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing? I did just fine getting around when I switched to ADVIL during the daytime. I needed some help getting dressed (bra, shirts, ect.) However, showering I did fine and doing my makeup was fine as well. Although my shoulder was sore as a whole, I was already able to lift my arm higher than 90 degrees on the morning of day two post op to do my hair.

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?
I didn’t need help with the incision- They closed it with sutures internally and derma-bonded the outside. I didn’t have a drain or tube for my lung. I DID BLOWDRY my armpit dry instead of with a towel though. Oh, they went through my left armpit. 

6.How did you manage pain? Did you need ice a lot?
I took Vicodine for the whole day that I was discharged. The next morning I switched to taking ADVIL all day and only taking the Vicodine before sleep. I am 6 days post op now and will continue this routine for another few days.

7.What was it like the first couple of days?
I slept fine when in my own bed, however the left shoulder blade pain was by far the most intense pain to have delt with. Finding a comfortable position was tough, slept half on my back and half on my right shoulder. Breathing was fine, though breathing deep (like you’re supposed to do) was difficult because of the severe shoulder blade pain. I second the constipation factor- buy some milk of magnesium and take it day two or three post op when you’re home. Things are slow in the house, but I was up and moving my arm on day two post op.

8.The first week?
Same story, start doing more and more with that arm- raising hand above my head. Day three at night I could raise my left arm 180 degrees. Didn’t have pain doing this, it was just tight and uncomfortable. No heavy lifting.

9.The second week?
Not even there yet.


Skip 10 and 11

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?
No public tans, I did dishes with my right hand just fine, got around just fine, shopped fine. I bought a sling and ONLY used it when I went to the store, if anything, just to tell people non-verbally that I’m injured and don’t walk into me. Give me some space, was the msg with the sling. Worked great. Didn’t wear the sling while at home, outside in the yard, ect. DID use a big fluffy pillow to rest my arm on while in the car though.

13.How active were you, ie. walking around?
Walked around and got active very quickly, didn’t hold me back much at all. Although, I cant hold many items in my left hand because they are too heavy, too high above my head, ect.

14.What kind of tools did you use to make it easier for yourself? Any tips/suggestions?
Big fluffy pillow for the car, sling for the grocery store to warn people, ADVIL, didn’t use ice, I had a heating pad for my back to loosen my muscles in my back/shoulder blade area, and try to get back to eating as normal and as quickly as possible. Stretch your arm, push yourself only a little bit at a time to regain ROM. The longer you baby those motions, the harder it will be to recover. BTW- I am not going to PT, surgeon says I won’t/don’t need it.

Happy healing to everyone, hope this helps!
Jocelyn

Hi, I am a 32 y/o female. Historically, fit, healthy, and athlete in past (college soccer and competitive road cycling for 4 years). I work in public health research and policy for the last 5 years have primarily worked at a desk and computer/phone 40-50 hours a week. In July of 2009 I started to notice weakness and tingling in my left hand followed by lack of sensation and cold fingers. I assumed it was from my position on my road bike and from all the time on a bike and at a desk but kept getting worse after stopping the bike and ultimately taking a leave from work. My primary care sent me to a neurologist. The neurologist ran tests- MRI and CT of head, nerve conduction study, and sleep study and diagnosed me with "carpal tunnel" and noted degeneration in cervical spine and recommended cyybalta for nerve pain and physical therapy. By November I felt some improvement from physical therapy but had already discontinued many activities. In December of 2009 I woke in the middle of the night with extreme swelling and pain in my left arm (left arm had completely blown up! couldn't see fingers) - ER found large clot in neck and arm (subclavian vein main clot) and I was put on blood thinners. After almost a year of treating clots and then trying to figure out WHY I got clot, found out about TOS. Was diagnosed with venous TOS with neurogenic as secondary. Venogram in August of 2010 confirmed this - showed blood flow slow to a trickle when arm abducted away from body. Did lots of research, tried physical therapy, massage, chiropractic, rolfing (which helped the most of any of the physical modalities I tried), postural reeducation, alexander technique, and feldenkrais. Consulted as many people as I could in ALL disciplines - not just biomedical-model-only practioners (ie. MD world) but holistic as well - doctor of osteopath (DO), hematologists (3), neurologists (2), physiatrist (1), PT's (2), vascular surgeons (2), cardio-thoracic surgeons (3)- finally, as symptoms were not improving even after clot dissolved, chose to have surgery at MGH with Dr. Dean Donahue.

Properative diagnosis: Left venous and neurogenic thoracic outlet
Name of Operation: Left paraclavicular first rib resection with anterior scalenectomy, brachial plexus neuroplasty and subclavian venoplasty.




1.How was it right after surgery? Day of? The first couple days?
It took just under 5 hours and was done via a supraclavicular approach. When I woke in recovery I didn't have "pain" per se because everything was numb and swollen but I did feel like I had just been run over by a mac truck. I'm not going to lie, it sucked. But, it was nothing like the pain I thought it was going to be. Waking up after surgery and actually being able to feel my fingers was worth all the other stuff (catheter and all!). Right after surgery I couldn't feel anything in my shoulder/chest/neck - all numb - but I did have difficulty taking deep breaths and felt sharp pains deep in my chest and shoulder. When I got to the cardio-thoracic floor from recovery I was feeling pretty out of it (surgery was from 8am-1pm) but by that evening I was very, very sick and for about 8 hours I couldn't stop vomitting (from the pain medicine - dilaudin) Because of the intense vomiting they took me off the narcotic and put me on high dose motrin for 12 hours - that helped and by day 3 I was able to go to the bathroom on my own (and go #2!! yeah!! Having a bowel movement was actually pretty stressful - all they talk about in the hospital re: when you can go home is going poop on your own!!) getting ready to be discharged- barely felt anything except for numbness and heaviness in the shoulder and waves of cramping deep inside my chest (lidocaine patch was key to helping relax these contractions). Was suprised that I could be okay on Motrin after all that! But, seriously, motrin was much better for me than the narcotic. Also, lidocaine patch put on shoulder was best pain management tool. Highly recommend these patches!!! Very expensive if you don't hae insurance coverage for these patches post hospital stay so try to get a few extra while in hospital or at least go home with one. Unfortunately, because of all that vomitting I popped a bleb (small hole in lung common after surgery) and routine chest X-ray showed a small pnemothorax (air trapped around lung) which developed into a tension pnemothorax (very dangerous if not treated asap) and I had to have a chest tube inserted on day 4 to drain the air (the bulb drain was not effective) and was hooked up to wall suction for 2 more days. The chest tube in my side for 3 days was honestly the worst pain I have ever felt. As soon as it came out I felt like a million bucks.

2.What was it was like when you left the hospital?
I was discharged 7 days after the operation (extra 4 days for tension pneumothorax and chest tube). Before leaving the hospital I went to pathology and collected my first rib (I had requested prior to surgery that I be able to keep my rib) - it came in a jar with formaldehyde Got a tour of the pathology lab. Mom and I took a taxi home (BAD idea) - any bouncing or jostling was really bothersome. Had to remind taxi driver that I was recovering from major surgery. In hindsight, wouldn't have taken a taxi but we were in downtown Boston and it seemed easier. When I got home, I was suprised at how easy I was able to move about and how little help I needed. First day home I went on a 30 minute walk and it felt great to breathe non-hopsital air and move my feet. Lidocaine patches every 24 hours were a god send for chest cramping and pain. A note that it was really challenging for me to

3.What was it like getting around?
Started daily walks the day I got home. First couple were a challenge re: balance and speed - felt like everyone else around me was flying by! By day 4 at home I was doing 1 hour walks no problem - slow and steady and with a buddy.

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?
Right away I was able to bathe by myself and go to the bathroom alone but I needed help getting my shirt/bra on and off. Arm was very limited re: range of motion and couldn't lift it above my shoulder. Was able to feed myself but needed help with laundry, dog walking, opening or twisting open anything. Also, neck range of motion was very limited for first week.

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?
I have two incisions - one above and one below the clavicle. I needed help changing and cleaning my incisions for the fist week. But was able to wash and pat dry solo when in the shower. I also needed help applying lidocaine patch (highly recommend!!!).

6.How did you manage pain? Did you need ice a lot?
I was in a lot of discomfort for the first 3 days home and took the pain medicine every 4 hours - started stretching it out to 6 hours and then 8 as days went on. By day 5 home I needed pain medicine mostly at night to help me sleep - discomfort was primarily the incisions themselves and deep inside my chest and shoulder. Used lidocaine patches at night as well. I used ice (frozen peas) at night especially to take ht edge off the inflamation. I was very, very swollen and couldn't take advil bc I am on blood thinners. Just a little ice helped a lot to get my body to relax and took the edge off the swelling and helped me sleep.

7.What was it like the first couple of days?
(see above)

8.The first week?
THe first week was actually not as bad as I thought it would be - I couldn't believe I was walking outside everyday - but honeslty that helped me mentally recover from what my body had just gone through. Sleeping was ROUGH!! Needed lots of pillows. Woke up several times a night to change position. Couldn't sleep on back or tummy.

9.The second week?
Much less pain medicine, ice as needed, daily walks, started to get much more range of motion in arm and could lift a glass of water. Still waking up in the middle of night to change positions. Had to get up out of bed every night (around 3am) and take a motrin,walk and stretch for an hour or so, heat my shoulder, before I could fall back asleep.

10.a month post op?
Incisions still hurt - most painful week 3. Not able to wear a bra yet. No pain medicine. Motrin and heat. Heating pad, hot baths with epsom salts, stretching every 3 hours, moving positions, breathing exercises, all help keep symptoms in check and decrease pain and keep me moving. I felt worse week 5 and 6 then I did week 2-4 - I attribute that to coming off the pain medicine and the body starting to process the trauma of the surgery. Sleeping through the night - much better sleep as soon as I was able to start sleeping on my tummy. Limited to back and side at first because of ROM in neck but now tummy sleeping helps a lot with pain keeping pain in back and shoulder at bay.

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?
NO public transportation until 4 weeks post op. Jostling is the WORST. Meals kept simple I could handle. Shopping was actually a good activity for me - supermarket that is - pushing cart around for 30 minutes felt good and was a good activity to get me feeling like a human again. Def. couldn't lift anything heavier than a glass of water or book for first 4 weeks. Driving still a challenge because of neck range of motion and turning wheel with affected arm. Chest strap on seat belt hurt so had to move out of way. At 7 weeks post op now I still try not to drive much - a short 2 mile trip every morning to park to walk dog is most I can handle. Oh, yes, the dog! The hardest part! And, walking dog is big no-no - DO NOT use a leash - find a place where they can run free and then hopefully call them back into car on own...but, my dog is just over a year old and is a 75lb golden doodle.

13.How active were you, ie. walking around?
I was walking about in the hospital by day 3 and then every day after that once home. Walking was a challenge at first re: balance and breathing, but it really, really helped my mental and physical recovery (especially since I was in the hospital so long in a bad position in bed). At 7 weeks post op I am walking 1-3 miles a day (depending on how breathing is going), doing range of motion stretches, and just started to use an indoor bicycle (sitting upright). Prior to TOS I was a competative athlete - soccer player in college, competative road and mountain cyclist, avid yoga class goer, and general fitness enthusiast. While my urge is to get more active right away, I am reformed, and am trying to listen to my body and it is telling me to take it SLOW lest I end up with bad biomechanics and scar tissue from pushing it too soon. I constantly have to remind myself that this is going to be a long process of healing - my arm reminds me - it only lets me do so much - can lift more with my arm now, larger glasses of water , but still no weight bearing.

***My Special Notes/Suggestions****
1. Narcotics really constipate you and it was very difficult to "bear down" to push: 1) because of your weakened/turned off diaphram muscles and 2)I was also told to be careful about pushing too hard or coughing too card b/c of sensitive surgical area - especially after I had vomitted too hard and actually caused a pnemothorax (collapsed lung) from the effort/"violence" of the heaving. I highly recommend getting on a daily dose of metamucil when you leave the hospital for at least as long as you take the narcotics and even longer (I still do at 7 weeks post op) because of all the crap in your system from surgery- takes A LONG time for your body to get rid of all the residual from the surgery drugs.
2. Chest X-ray and Collapsed lung. Make sure you talk to your surgeon about the potential for a collapsed lung, how they will detect it post-op/make sure you aren't discharged with potential for collapse (numerous x-rays should be done in my opinion - oxygen rate is not enough - I never went lower than 97 oxygen rate- and that was at the critical, we gotta get this chest tube in now at her bedside stat moment.
3. Venogram. If you have 1) had an UEDVT (upper extremity DVt/blood clot in upper body) 2)been diagnosed with venous TOS or suspect it and/or 3)someone has recommended surgery for venous TOS, you should get a venogram done. It is relatively low risk and in my opinion one of the best diagnostic tests for determining whether you have compression that is biomechanical, postural, or from scaring - plus it is a great visual picture of what is going on not just at a moment in time, but during movement, it helped me tremendously to visualize what was happening in my veins.


I am 7 weeks post op as of this posting. Happy to share info with anyone but typing is still a struggle so please feel free to ask specific questions or send me a message and we can talk via phone if helpful. I had a hard time deciding to do this surgery - I even had to reschedule it after freaking out the night before first try - it was not an easy decision to come by - especially with the lack of evidence and long term outcomes re: TOS. PLus all the complicating factors....blood clots.... So, I feel you if you are sitting out there reading this and are trying to make your own decision about surgery. Please, you aren't alone!! Reach out - we are all very unique and individual re; our specific anatomy (something I learned along the way) and not one of us is the same re: tx. BUT there are a lot of similarities and we have all had a lot of experience knocking on doors and doing research. Good luck!!!

Moxie, you mention Boston. Was this Mass G and Dr. Donahue?

So, I feel you if you are sitting out there reading this and are trying to make your own decision about surgery. Please, you aren't alone!! Reach out - we are all very unique and individual re; our specific anatomy (something I learned along the way) and not one of us is the same re: tx. BUT there are a lot of similarities and we have all had a lot of experience knocking on doors and doing research. Good luck!!![/QUOTE]

Hi, Moxie (and others)! I'm going to have surgery with Dr. Donohue and would would love to talk with you. I'm not sure how this forum works or how to do this.

Thanks everyone for your stories, which are very helpful!

I just had my first rib removal four weeks ago and like Bex, I spent hours searching the internet so I thought i'd add my experience

1.How was it right after surgery? Day of? The first couple days?
The surgery took 4.5 hours and longer than expected as I had big dense bones and when I woke up my whole shoulder was completely numb, so had no pain at all. I wasn't allowed to leave the bed for 12 hours after the GA so I had a very sore back from sitting in the same position for hours. Next day was much better and started to move about and all the drains and oxygen were removed.

2.What was it was like when you left the hospital?
I was discharged 2 days after the operation and although I was stiff and sore, I managed fine on 4g paracetamol/day and diclofenic. It was hard to sleep for the first few days so I used several pillows.

3.What was it like getting around?
Left the house after 4 days to walk around, I was pretty tired and it took longer than expected and I avoided the crowds, 15 mins of walking was all I could manage.

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?
It was all fine, only needed help with shopping as I live 20 mins walk from shops and couldnt carry much.

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?
I went to the Dr to change one of the dressings and then I changed it for the second time.
The incision was really neat and was stitched closed with subcutaneous stitches, so no need to have them removed.

6.How did you manage pain? Did you need ice a lot?
I was never in much pain as the area was (and still is numb) but used paracetamol and diclofenic.

7.What was it like the first couple of days?
(see above)

8.The first week?
It was traumatic going out in large crowds for the first time as most people in London don't pay much attention to what they are doing and will happily barge your shoulder!

9.The second week?
I got back on my feet fairly quickly, I was back at work after 2 weeks, walking around to a normal pace after one week and back in my bike after 1.5 weeks. I wasn't given any physio instructions so after 3 weeks I was back running and now after 4 weeks I am able to run 15km with some soreness around my neck. I have been to see an osteopath so help move my muscle back into place and losen them up.

10.a month post op?

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?
Traumatised by my first trip out but friends helped for the first two weeks and then I was back on the tube to work.

13.How active were you, ie. walking around?
I was walking about after 4 days but very slowly, noticably better after one week so I could walk at normal pace. Out on the bike after 1.5 weeks for a light cycle and then running after 3 weeks. 4 weeks after the operation I have been able to run for over 4 hours in total this week and 2 hours on the bike.

I am training for triathlons so I went into hospital with a high level of fitness, I think I have been very lucky to recover so quickly when looking at other people's experiences but I think my fitness level helped a lot. 4.5 weeks down and I am almost back to 100% with some neck soreness and numbness in the chest area.

Well done! having read some bits on this website, it seemss the the post operative recovery can beinfluenced by what sort of TOS and rib resection you had and by the level of fitness before the op

I am 7 weeks post op for a rib resection and scalenectomy and its a bit of a roller coaster. I only had 10 days from initial symptom & diagnosis to the actual operation as mine was arterial and had already had a blood clot in my hand.
It was a whirlwind of tests, specialists and second opinions and almost wish I had more time before the operation to prepare mentally. I went from being quite fit (still need to shed a few kilos!)with a cold, numb finger to the operation and completely imoble and that was the real shock.

The operation was abouto 4.5 hours and the first few days after the op were agony with shoulder pain and breathing problems. My diaphram had come right up my chest due to nerve paralysis adn was extremely uncomfortable. I take my hat off to all those people who were discharged after one or two nights, I was in hospital for over a week and had physio twice a day from day 2. I was on morphine for 3 days which gave me migraines and for the first 2 weeks after the operation i was unable to sleep for longer than 2 hours at a stretch.

Things do improve, I have been lucky with complete home help ( we live in Singapore) and so I think my recovery has speeded up as I have been able to rest as much as I want.

7 weeks down the track, still having pain in my elbow and this last week periodic coldness of my middle finger (this is not painful just irritating). It seems that the pec muscle may be pinching as this is very tight and painful. I have been back to my surgeon who has put me on muscle relaxants to see if it is truly the cause ( I think this is why, Singaporean surgeons are great but not at explaining things).

I have begun to exercise again, managed 20 mins on the runner today and am feeling very chuffed with myself.

My scar has healed really well, if anyone is contemplating the surgery its worth asking if a plastic surgeon can close up. Its not much cost in the relative scheme of things and because of the location of the surgery lots of insurance companies will pay for it.

I have been shocked by the total cost of the whole procedure and thank god that we had great medical over. So far my bill has come to approx SGD $60,000 ($48,000USD aprrox) and that is without any of the physio which they estimate for another $5000SGD.

I had Arterial TOS so there was no option to not have surgery but I have realised I will rpobably take the full 3-6 months to fully recover

Hi, Can I check with u which surgeons performed the surgery for you? I live in Singapore and was diagnosed with TOS for 2yrs. I have yet to go for the first rib removal surgery as I am indecisive of its outcome. Thanks.

bumping for new members (myself included) and those who recently completed this surgery!!

Hi,

Last Tuesday I had a first rib resection, scalenectomy and pectoralis minor tenotomy. I have bilateral vascular and neurogenic TOS and Pectoralis Minor Syndrome. I have arterial and venous impingement on both sides, as well as severe brachial plexus lesions. Four weeks prior to the surgery I was given Neurontin to alleviate some of the nerve tremors. I was discharged from the hospital a little over 48 hours after surgery. I refrained from using my dilaudid (similar to morphine) drip 24 hours post op, as I did not like the headaches and nausea it caused. Since then I have been taking my neurontin faithfully 3 times per day, as well as a 5mg oxycodone as needed, but no more than 3 per day . I also take Fiorcet as needed for my headaches... which have dramatically declined in frequency and duration over the last week.

Since my return home, I have noticed marked swelling of the vessels traveling up my neck from the clavicle incision. My surgeon called this afternoon to check on me, and indicated that the vessels were unusually swollen as he needed to separate the vein. I am not sure quite what that means, but I will find out Friday at my post op visit. He was also upset to hear that I had not begun my PT or OT regime, as the surgical fellow assigned to my unusual case did not write the necessary prescriptions. Has anyone begun PT and/or OT a week post op? I am doing well otherwise, and now realize how much pain I have been in for so long, as my left arm (the surgery site) is less painful than my right arm. Go figure.

I would love to hear of anyone else's stories.

Sounds like things are improving for you, TOSPITA. That's always good to hear! Do you mind if I ask who your surgeon is and where you had the procedure performed?

I haven't had the surgery yet, but one of the docs I have met with routinely prescribes a PT course to start 2 weeks after surgery.