Hi I'm an Aussie 35 year old guy with diagnosed TOS. 1st and 2nd ribs are fused so in a couple of weeks the vascular surgeon is going to cut them out. The subclavian vein gets completely occluded, I don't even need to raise my arm to lose pulse - just pull back the left shoulder and it's enough lol. Having said that though it seems tolerable apart from waking up every morning with a numb arm etc. There is a pulsating mass just above my collarbone where the docs say it's being pushed out due to the bone/fused formation.

After reading the horror stories in here it seems like most things get worse after surgery from scar tissue and general weakness etc, hence it's got me wondering if having the op at all is such a good idea if things are going to be like that. Would things get worse if I was to just stay like now? I mean seriously this isn't all that bad compared to what I'm hearing can occur afterwards, can anyone be kind enough to grant some helpful advice because I'm feeling quite apprehensive about the whole thing.

Btw I just got out of hospital a few months back from thyroid cancer surgery, basically they removed the whole thing but given that the thyroid resides just below the skin of the neck it was rather non-invasive and tbh it's nothing compared to the TOS op. Apart from that I'm strong and healthy, no problems at all.

You and your doctor know your case best. I would caution you against refusing surgery when you have venous/arterial involvement because of the risk of gangrene, stroke, and pulmonary embolism. However, the decision is ultimately yours. Make sure you have a surgeon who is really well-versed in Thoracic Outlet Decompression and your odds of having a really good outcome are high as you have a vascular form of TOS and a bony abnormality Those factors as well as not being in a lot of pain/medicated for pain prior to surgery and being younger are on your side.
I just had the surgery myself and though I'm not 100% yet at 7 1/2 weeks post op, my arm symptoms are all but gone. I still have a ways to go but my issues have been more centered around my post-op care than the actual surgery itself. I also have other medical issues that contribute to my symptomology.
I wish you the best of luck! And make sure you know what the risks are of refusing surgery. That is what ultimately pushed me to take this seriously as, at 25 and the mother of a 1 year old, I should make sure I stick around for awhile.

Hello Taki,
Since you have an obvious issue showing on imaging, and mostly a vascular problem, surgery usually has a much better outcome.

With a skilled & expert surgeon of course..

Did the dr mention the risk of clots with vein occlusion?

Usually it is the neuro type TOS with no clear cut cause that makes less than maximum post op outcome.

Or a less than stellar surgeon.
Or just plain bad luck.

Thanks to all you guys for useful replies I didn't realize with bony/vein issues the surgery is more straightforward so thanks for that. As for the neuro thing I can't remember fully but think a nerve is involved since my left hand is numb. Actually when I was first diagnosed they thought it was carpel tunnel until investigating further.

After surgery and healing will I be right to do push-ups etc do you guys think?

It's not that the surgery is more straightforward or easier, it's that there is a clear diagnosis in those cases. You can *see* artery/vein involvement, you can't see nerve involvement. So people who just have NTOS could have one of many diagnoses and it's a matter of determining which one it really is. So some people with bad outcomes from NTOS surgery never actually had TOS at all. Also, if symptomology is from lack of free blood flow and you restore that blood flow, things are corrected almost immediately where nerve involvement=very slow healing and possible permanent damage. When you have a bony abnormality that is another thing you can see and recognize before going into surgery where other people the surgeons just guess that there must be an issue with something and just remove muscle, scar tissue, fibrous bands and whatever abnormal things they find in hopes it decompresses the area.
After healing from surgery, you will probably never want to do another push up. You'll have to be careful not to develop scar tissue in the area and I've been told by PT to never do anything even resembling a push up for the rest of my life. You'll find out what your particular restrictions are, but it's becoming apparent that I will not be able to bring in all the grocery bags at once, I won't be able to do overhead work and I won't be able to do other repetitive activities for any length of time. Others heal better- especially the ones without chronic pain issues. I don't say this to scare you! It could be different in your case, but know that TOS is a rough thing to have and there's likely certain restrictions you will always have to prevent it from reoccurring and to avoid pain.

Thanks for the advice, think I prefer life as it currently is

I'd like to add a word of caution. I have no doubt that you do "prefer life as it currently is". However there is no guarantee that the situation will remain so rosy. My 1st and 2nd ribs are (were) fused, and your symptoms largely match what I experienced during the 1st year of discomfort related to TOS. Things got progressively worse for me from that point, until the surgical option seemed heaven-sent as it represented my last chance at restoring my arm to a degree that it would be able to perform even the most basic activities.

I'm just 2.5 weeks post-op so I cant add any details from personal experience (yet). But my surgeon was far more optimistic when describing the possible outcomes than a lot of the stories I've read on this site. Don't despair if that's what things come to. If you do opt out of surgery make sure not to ignore any additional symptoms that may develop over time.

-Ben

Hi Taki and welcome to the forum. Im a little concerned that you asking questions so close to the surgery. What you are about to experience is not common here in Oz and there are a lot of professionals out there with no idea, so their statements about recovery being fine and quick, i feel, are garnered more to getting your dollar from you.

Facts are with TOS, while everyone is different and presents with different symptoms, it is a syndrome which means that it has no common diagnosis. That is why you must get as many tests, MRI's and a venograph to inform you and the surgeon as much as possible.

Im in Canberra and well placed with facilities. I don't know what state your in, but NSW, ACT and Vic would have the better surgeons, but really good ones are few and far between. If you are fit at the time of the surgery you will bounce back quicker that those who are not.

Your's is a special double banger, so that will be special on its own. I would have suggested to really doctor shop with that one, but you have already said your surgery will be soon so i guess you are locked in.

Dont worry about scar tissue. If you do not have a disposition to it, it will not happen, your recent surgery will attest to that. You will be weak for some time, there is a lot of key muscles and nerves that get moved around and the drugs are strong.

Remember, they will need time to carve away at you, and your lungs will be exposed for a time as well, ços thats where they are, so you really are not going to be bouncing back in a few weeks or playing volleyball any time soon after.

If your real goal is to wake up pain free, you will need to experience bit of OMG time but things will get better after six months, after that you will forget the pain you used to have. Putting it off will just promote other vascular issues through your body and you will be unwell for numerous reasons then.

Being strong and healthy at the start however, makes for a better recovery time so i wish you the best of luck. Visit my profile for some pictures.

Wow those pics are scary you poor guy I wouldn't wish it on my enemy! I'm in Brissy which means only a small choice. Was going with a vascular surgeon named Dr Ray. He says he's done heaps like 10 a year and seems really confident. I'm strongly leaning towards putting it off a few years and see how I go. Ive already had TOS for a couple years now and it seems always the same. Basically I can control whether my pulse stops or not - it's just a matter of not pulling back hard on my left shoulder and the blood flows normally. Of course when sleeping I shouldn't pull that arm up over my head.

Sorry to bother you guys with all your help and good intentions, guess time will tell.

Oh man, that is a HUGE red flag. 10 a year is NOT AT ALL "heaps." You're looking for someone who does at least 35-40 a year. That's "at least." The surgeon who did mine got 10 referrals for TOS a WEEK! And he still didn't do everything the way it probably should have been done. I would recommend finding another surgeon for a second opinion. That being said, be careful about waiting too long. symptoms can come on hard and fast and, as said before, a slew of vascular issues can pop up seemingly out of no where. You don't want to ignore this then wind up in the hospital a few months down the road because you're having severe pain in your arm from a clot or even something like a stroke.