Thoracic Outlet Syndrome

I know this is an older post, but thank you for being so willing to answer questions about your surgery!

I've been repeatedly diagnosed, but finally offered some solution in rib resection and partial scalenectomy but an experienced surgeon I trust very much. (I developed neurogenic and vascular TOS through chronic arm dislocation after a kayaking accident, yanking out my arm and causing a stretch injury in my brachial plexus and long thoracic nerve.)

Before my accident I was an avid climber and weight lifter. It's been 2 years of total disability, not able to live on my own, but I'm still Really worried about returning to overhead activities after surgery.

Do you find any troubles doing things over head? Can you hang from your arms still? Does your physiotherapist think you will be able to return to lifting heavy weights? What about pulling or rowing motions?

Hope your recovery is going well, and thanks again for sharing your experience.

I'm hoping to hear from anyone though realize it's an old thread, that could actually be helpful. I'm writing in regards of my boyfriend who has a major adversion to doctors and hospitals, likely stemming from getting a transaxial surgery for artero TOS when he was in high school, a year apart on either side. He will be 26 in April and had these done when he was 17 and 18 when his arms swelled drastically and lost feeling and I believe grew pale suddenly a while after getting serious about weight lifting. I know his doctor told him it was an experimental surgery, though it could've been his first time as it was performed in OSU medical, a teaching hospital in Ohio that I doubt gets a lot of traffic for the condition. I know they told him he wouldn't be able to play drums the same for a very long time, if ever, but he pushed himself to be performing again within 6 weeks (his band was actually touring a few states, he's pretty good and it is definitely an arm intensive activity). I've actually held the pieces of rib he got removed, his mom had one made in to a necklace for his last birthday, and it seems they took less than 3 inches to make a gap? From what I've read on here it sounds like in other cases the surgeons chose to remove much more? 

I'm asking because he's recently told me he still feels it regularly in his left arm, muscle weakness/pain and that nerve tingling, his hands shake often, he complains of headaches in the back base (like directly inferior to external occipital protuberance) which I've read are a symptom? I just wanted to know if in your opinion/experience if this was common? Like a ghost pain or result of nerve damage, an unsuccessful surgery? I wish he would talk to a doc about it but refuses, he has done a lot of drumming/manual labor since high school and I don't have every faith in the hospital or surgeon, though he says he was a great guy he sounds inexperienced...his family didn't have another option financially. 

I was hoping to hear of any ways to lessen the pain he is still living with or if this is possibly more serious than he lets on, or maybe if you guys have had the same things happen? It's just been over 8 years and I would hope the full recovery would be done by now but I'm no expert, and if he needs another surgery to resolve this idk I would have to really talk him in to even getting it looked at again. 

Thanks in advance!

Hello! Really hoping that you will see this! My mom has been suffering from TOS for about 4 years now and I think the information you've provided about this doctor may be exactly what we have been looking for. How is your recovery going now?

Hi, I am so happy to have found this site.  I have been experiencing TOS symptoms since age 11 (I'm 47 now).   In just the past year I finally have a diagnosis of veinous TOS after a four day stint in the ICU for a blood clot in my subclavian vein.   Unfortunately, the attending physician was not familiar with TOS and after finding the clot decided to talk me into having a stent placed.  Within 10 days the stent was crushed and my symptoms returned.

After much research, I have seen two great vascular surgeons one being Dr. Gelapert at UCLA.   Both physicians recommend rib resection surgery but have opposing approaches to surgery.   One does it via transaxillary and the other Dr. does the surgery via cutting above and below the clavicle.   

Can anyone give me their opinion or experience with either approach so that I can make an informed decision?   

Thanks so much!!

Hi Everyone;

I may not be on the correct discussion board here - I feel like i have all the sx but was told by a vascular surgeon after a normal arterial ultrasound that there is no was I can have TOS.  There was no exam or history taken, but he did mention that I am older and not an althete, therefore I do not meet the 'typical' criteria for diagnosis.  My question is - was anyone else diagnosed based off of an arterial ultrasound?  This Dr. claims that if the arteries aren't compressed, it follows that the nerves are not compressed either.  Thanks for any input you can give.

Hi, I have had two surgeries for TOS one back in 2012 and then a repeat surgery back in 2014.  I still have no relief and still cannot feel my chest from the nerves that well.  I have done everything the doctors have said.  I went to UNMC with the chief of vascular surgery that did my surgery and he will no longer see me becuase there is nothing more he can do without it becoming a huge lawsuit due to permanent diaphragm nerve damage.  I still have weakness, modeling of the skin, poor circulation, tingling, numbness of the neck, arm, and hand as well as headaches.  They told me that it was something I may have to live with the rest of my life. Softball was a passion and was unable to go on in my senior year of highschool and so I resorted to bowling.  Bowled in college for two years and doctor told me that I could no longer bowl anymore becuse of all the issues I was having.  It depends a lot on how your body reacts.  The PT and everything else I was to do for recovery may or may not work it depends on your body and how the scar tissue builds up.  The numbness goes into my face and makes me debilitated at some points.  Am wanting to go to another doctor and see if there is anything they can do but so far I have not had any luck.  Any recommendations?

Hello, I realise it's been a while since you posted, but I'm just keen to pick your brain a bit ... You have obviously experienced TOS for some time and will understand it better than most ... I have had the right side done  (5 weeks ago) ... I presented originally in july 2016 with all the usual symptoms including severe anterior chest pain, pain radiating down the right arm, tightness in various muscles in the back, blue discolouration of the right hand etc ... However, I have also had weird cramps in the muscles of the back and am having similar weird cramps in the muscles on the left now too ... Did you also get muscle cramp / spasm as part of the TOS ? It's very odd and unsettling - so when I activate the muscles for whatever reason, there is a very slight delay then this intense slow cramp develops which almost catches my breath it is so intense

Although I don't have any other symptoms on the left (other than severe cramping) I'm guessing I am affected on the left side too ... 

I would be interested to hear your experience - to see if you too have experienced this weird cramping sensation  too - and if so does it settle?

Thanks so much