I would encourage you to follow your gut. I wish I had.

I had surgery 8 years ago for mostly neurogenic TOS but I also had vascular involvement (demonstrated in various studies). I never returned to work as an attorney. My life is infinitely smaller than it was before the surgery. Perhaps this progression of pain would have happened without surgery but I'll never know.

In my experience, the surgeons understate the potential for problems and overstate "success." My surgeon in San Francisco, who does 2-3 of these surgeries each week, said I had an 85% chance of getting better, but he couldn't say how much better. Either he is overstating his success or I was just one of the unlucky people making up the dreaded 15%. I thought 85% going into surgery was pretty good odds; I didn't consider that I would be in the 15%.

Take stock of where you are. If you can manage the symptoms, is that better than potentially being dependent upon opioids, unable to work or exercise, with much higher pain and headache (unfortunately, that has been my experience).
I don't say this to scare you or because I am anti-surgery in all cases. But it's a big surgery and I think patients should go in with their eyes open, especially if they are not experiencing much distress presently. As others have said, the analysis is completely different if you have blood clots.

Good luck with your decision.

Kelly

Is that Dr Mark Ray from Greenslopes PH? and nobody is a bother to others, we are all here to provide personal experiences as a support mechanism when all others come up short. A lot of it is for the mental health aspect as well which surgeons and PT providers don't care to mention because they have no experience of the debilitating affects and the lack of empathy really messes with your head (personal experience and opinion there).

You have not told us if you have had the standard brace of tests and images taken, but if you read through my original posts, I've mentioned how MRIs etc are also to dismiss theories as well as confirm them. For example, my Doppler ultrasound was a waste of time (I thought) because the Venography showed where the blockage was perfectly and also showed that excessive workload placed on nearby veins to take up the flow. The Doppler showed the exact time of blockage occurring when I raised my arm, my surgeon needed to know.

Don't let anything you read here put you off. Looking out for your best interests in getting the most from tests and images is important and if you have two ribs fusing, your issue requires more care. As LiveLoveandTrust and I have said, if you leave it longer, other vascular issues WILL arise, that is advice from our surgeons, we dont make that stuff up.

Has Dr Ray discussed the two methods of entry? Armpit (or axilla) usually for the simple ones and has minimal disruption to nerve bundles and generally results in a quicker recovery (apologies to Marc from Orange County ) then supraclavicular, from the front above and below the collar bone (clavicle) for the bigger jobs. Mine was the second and i have been quite slack in updating my progress on my own thread. (I will post a CT Scan soon that shows the result in glorious 3D).

Can you tell what scans you have had done and what they looked like?

First of all big thankyou to all the replies they are all very helpful in different ways. Mainly addressing Blurto's post - yes it is Dr Mark @ Greenslopes and he said to go in from above but he might need to go in from the armpit as well.

I've been for heaps of tests, 3 ultrasounds, CT Angiogram, Xrays and MRI. The MRI actually showed nothing but that was because my shoulder was slightly forwards in the tunnel thus switching the TOS 'off'. I was wrong in my post earlier and after checking the scans it's the subclavien artery that occludes not the vein, the vein has done something odd and grew around the problem?? Don't ask me to explain the technicalities, the ultrasound lady seemed astonished and kept saying that it had somehow 'morphed' (is that the right word anyways XD) and isn't in the place where it's meant to be. I couldn't understand what she was on about tbh.

All the other tests especially the Angiogram show the 1st and 2nd ribs fused with a bony mass type connection thus pinching the artery when the shoulder comes forward. I'm about 80% to put this op off and see how things go but of course I'll be on the look out for anything that might eventuate away from the usual symptoms that i'm now completely accustomed to.

Don't delay Taki, it seems that you've had a good selection of imaging for your surgeon to look at, don't be distressed over the MRI, apart from the cost... ...they dont show nerves or vascular structure and definitely don't move, my surgeon prefers venography for blockages and uses MRI to identify bone and related defects. Google Venography images to see the results you can get.

Your ultrasound lady was trying to explain that because of the blockage, your body made other arrangements to keep the blood flowing and these other arrangements are still working for you. I love it when they don't know the right words to use for the patient to understand.

I wonder though, that if your problem is when your shoulder moves, potentially you could reach a solution with grinding the bone away at the narrowing, without having to remove a section or two, unless the two ribs are fused in that region. We'll be interested to see how you go with your upcoming adventure, so keep in touch.

Also, I posted a copy of my latest ct scan to my profile Album today, nothing flattering (not smiling at all) but you can see the result of my surgeons work.

Taki,
Reading your post made me feel like I have a twin, I have also been diagnosed with fused ribs, in my case 6 and 7 ribs...causes a lot of discomfort in the chest area, some times the disconfort radiates to the arm, and the entire pectoral. What makes our stories so closed is that I was also diagnosed by doctors with thyroid cancer, it was found by a ct of my chest while they were looking for the discomfort in the chest, but by the way, they didn't find the fused ribs that time either, I guess the thyroid nodule took the radiologist attention, I had to do a second ct scan to find the fusing....anyway now I've been treated for a posible cancer reoccurrence, it's posible but not confirmed.

Did you get the surgery? I didn't due to the doctors advise against it, he said too risky, more damage than good, long recovery, recommended yoga to losen things up, I haven't tried yet but I will, the discomfort in the chest is daily...get bac to me with more details about the issues you have daily, I want to compare notes...thanks

Since I have TOS, my first rib pops up and causes problems. My first instinct is to release the scalenes and then if the rib still pops up, get some surgeon to fuse it on the back side. It needs to stop moving so much! Its quite arthritic from the CT scan.

I would try to find out if it is tight/spasmed muscles making it pop up.

That's what made mine pop up and get stuck up.
I had to deal with the muscle issues first, then the rib,m later on if I did lift something too heavy I could tell it was trying to raise,so I usually stopped doing the activity , but if I couldn't and it did raise my chiro dropped it drown.
After a few months of no muscle spasms it stayed down..