I think that in her case, with her vascular risks, the rib needs to come out and probably some of the scaliness cut ASAP. Risk of more PE and stroke are too high. Everyone with these issues should read up on parson turner syndrome.
I'm over five years into neurovascular TOS and I also have a paralyzed long thoracic nerve. I agree that being in water (warm!) feels good. Overhead strokes might not be possible for her if compression continues.
Every case is different, which is the bane of the diagnosis. Definitely get more than one opinion. It took me quite a while to get the right diagnosis and believe my, I tried every possible type of conservative treatment. I was in AGONY. Finally last year Dr. Richard Braun in San Diego took my first rib (supraclavicular incision), and suddenly I had blood flow back and my hand swelling went down! What a huge relief! I still have problems with the nerve pain, and shoulder issues, but at least my arm isn't having a non-stop arm-'heart'-attack! I wish it had been approved 5 years ago. Maybe my life wouldn't have gone to ....
I travelled to other states on my own dime, and even to another country, seeking private treatment options. I need more surgery, and I wish it had happened sooner, but I trusted him. A lot of people don't understand this syndrome. There is no "perfect" way to diagnose it, and tests can be completely normal to appearance. And WC with fight you every step of the way.
Best of luck to both of you.
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Originally Posted by nospam
Definitely don't go with that surgeon. My surgeon's goal was to return me to full activity. While I am having more surgery to clean up the area above the clavicle (my first surgeries were through the armpit), I have been able to swim without any problems from about 3 months after the original surgeries. I can still swim today even though I am having surgery next week. I feel my best when I am in the water...less stress on the body due to buoyancy I am guessing.
Hiking post surgery has been no problem for me, but thru-hiking might be pushing it. I can wear a lightweight backpack, not a heavy one.
I am not saying this will be the case with your wife but it is possible.
My first recommendation is to find a therapist who can mobilize the ribs and scalenes to try and open the costoclavicular space and try to avoid surgery. Also, you need to shop around and find the right surgeon, even travelling away from home for surgery if needed.
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