I am 18 days Post-op first rib resection and looking for recovery companions. Would love to hear others' experiences.

Hi Marla,
I will be having surgery in June. Can you please tell us your background ---- how did you get TOS, what kind of TOS was it, how long did you have it, how old are you (please disregard if you consider this too personal), what tests did you have done to confirm TOS, who did your surgery and where, and what approach was used (above the collar bone or through the armpit).

If you already posted all this ---- sorry.

Thanks,
Jon

I will also be having surgery in June. Left cervical rib and first rib resection and scalenectomy.

Hi Jon. I'm 40 years old. It's kind of a long story, so hope you are ready. I do think it will be helpful for you to read though. Last June (2012) I ended up in the hospital for 4 days with a life-threatening infection that started with severe lymphadenitis (infected lymph nodes). The lymphadenitis was on my left side. I attached a pic (if I did it right). The pic was taken the day before I went into the hospital. The very next day the infection started moving up the left side of my neck and down my arm, so I was hospitalized and given IV Vancomycin. On oral antibiotics for another 6 weeks after discharge and wasn't allowed to engage in much activity other than work. I recovered quite well until September when I woke up one morning and I was very swollen and bright red under my chin and down the entire front of my neck (I will try to attach pic of this as well). Dr decided it was angioedema from my blood pressure med most likely (I stopped the med and went on zyrtec, zantac, prednisone regimen for about 10-14 days). Seemed to help symptoms so I assumed this was correct diagnosis (not sure now cuz may have been due to lymph blockage). In October, woke up one day and swollen (without redness) in same areas. Around that same time, I started getting chronic swelling at the base of left side of neck and my jugular would poke out really far. Long story short (not really short), I had every test and imaging study possible but nobody knew what was wrong with me. It was a very scary time for me. The only thing that was found in late November was "innominate vein compression due to aberrant right subclavian artery."
By that time, I had been referred to Mayo Clinic, but since they took 2 weeks to even get back to me (even with my doctor's referral), I chose Cleveland Clinic. Cleveland Clinic was amazing. They got right back to me within 24 hours. They were willing to get me in within days, but I waited a couple of weeks to wrap up some work things. They coordinated appointments with 3 departments/specialties (i.e., Vascular Surgery, Allergy, & Rheumatology) for full assessment/work-up. The doctors were all incredible. Vascular Surgery found evidence of vein compression but they wanted to do an angiogram to further explore. I was VERY FORTUNATE to get my angiogram/venography done that same week (this rarely happens apparently). I stayed a few days longer so I could have it done. Dr. Smolock did the angiogram and found I probably had Thoracic Outlet Syndrome - venous type. He told my husband that we were fortunate to have come there because Dr. Daniel Clair was one of around 10 surgeons in the US that specializes in first rib resection for TOS. It's a real specialty area and you want someone that specializes in this type of major surgery and that has done MANY of them successfully. He wanted Dr. Clair (Head of Vascular Surgery at Cleveland Clinic) to consult at my follow-up appt 3 days later. Dr. Clair said I "probably" had it, but he wasn't sure if it was neurogenic or venous types or both, and it was not clear-cut and there was no "test" for TOS. Some tests help with diagnosis, but not ONE definitive test. He suggested physical therapy for 3 months (for TOS) and then return for follow-up and discussion. He also wanted to wait for ALL of the tests ordered by other depts to come back because of potential interactions potential diagnoses could have with TOS. Did PT for 3 months and it became pretty clear I had venous TOS, lymph blockage problems, etc. My left arm was always much bigger than my right when they measured. Once my physical therapist measured my left arm BEFORE doing some lymphatic drainage stuff on me... it measured 13.4 before and 12.1 after... pretty clear my natural "pump" was not working well and that there was blockage. Whatever those pulse tests are that they do, on one of them my pulse would drop dramatically in certain arm positions. Went back to see Dr. Clair at end of March (with PT report in hand). All other issues had been ruled out by then. He suggested first rib resection would be very helpful in reducing my symptoms. He was clear that, because of how my symptoms started with that infection, that I might still have some swelling at times due to scar tissue that he wouldn't be able to get to during surgery. However, he said he would be able to clean out a lot of scar tissue in the largest area hit by my infection and that my veins would have more room when first rib resected, thus my symptoms would improve quite dramatically. He said I'd probably had TOS my whole life but that my infection had created trauma in that area and triggered all of the compression and lymph blockage problems. Dr. Clair performed my surgery on April 30th. He does the trans-axillary approach (armpit). I love Dr. Clair. He is straight-forward, compassionate, humorous, and all-around outstanding. He is the HEAD of vascular surgery, over 19 other vascular surgeons (I think that says something). I'm 18 days post-op. My recovery has gone quite well. While my surgery was only supposed to last about 1 1/2 hours, I was in surgery for 3 hours due to having more scar tissue and vein compression than anticipated and it was close to my lung so he was very cautious so he didn't puncture my lung. My surgery was on a Tuesday and I flew back to Montana on Friday. When I woke up in recovery, the worst pain was left scapular pain, likely due to them holding my arm a certain way for 3 hours during surgery. They put an ice pack on it and I definitely needed it cuz it really hurt. Only on pain meds (i.e., Vicodin) for 1 week. Never did have horrible pain, just chronic discomfort and the pain med definitely helped with discomfort. Tried to go back to work just one day prior to reaching 2 weeks post-op. Had a little bump in the road cuz woke up that day with hot red tender spots around my scar area (but not on my scar) and had a fever of 99.4. I'm not gonna lie, it scared me. I was only at work for 3 hours and then left and went to a doctor. It was just fluid pooling (called "seroma") and apparently not a big deal. They did an ultrasound to assess the area and that's how they diagnosed it. They aspirated it as outpatient and it was no biggie. I have been fine ever since. Started PT yesterday and I am sore, but mostly left scapular pain (I have chronic cervical spine issues too, so others might be different). I have herniated disks, stenosis, and "multilevel degenerative disk disease" in my cervical spine (from old gymnastics injuries most likely), so most of the pain I have had is probably exacerbated by these issues. My clavicle/first rib area has never hurt since surgery. The initial discomfort under arm wasn't pleasant, but not horrible. Kind of felt like I had a softball under my skin around my armpit/scar area. Lots of pressure and tightness mostly. SOOOOOOOO, that's my story... not very brief. Feel free to ask me anything else about my TOS and surgery. My experience has not been nearly as bad as what I have read about others' post-op. I think you need a really good, experienced surgeon and that makes all the difference. I do think you need to take a minimum of 3 weeks off from work, if not 4 weeks. I am going back again Monday, which will be just short of 3 weeks post-op. Wish I had longer to recover because I still feel periodic fatigue and weakness. I mainly don't want to add a bunch of stress, but need some money coming in so gotta go back. Take care Jon.

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Thanks for sharing and best of luck in recovery Jon.