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!!!