I have been having swelling in my right bicep & forearm for almost 2 years. It happens when I swim for more than 20 min straight. I have no pain, tingling or numbness. It goes down after a few hours. Over the last 2 years I've seen 3 doctors who have said there was nothing wrong with me. I've had an xray, ultrasound, MRI and MRA. All of which didn't show anything.
Met a woman getting out of the water in September after an ocean swim. She was freaking out telling me that I have TOS and that I need to go to her surgeon in Baltimore. I agreed that I needed figure out why my arm was swelling, but I figured I'd start locally in the NJ/NY area. She was in insistent that what I had was rare and that no other doctor would be able to diagnose me. She had different symptoms than I did: blue arm, pain, numbness. I don't have any of those symptoms. I have just had swelling for the past 2 years. I swim 3-4 times a week. I recently went to a sports medicine Dr at HSS who sent me to a thoracic surgeon. I have a venogram scheduled for the end of February. This is the first available time I am able to get this done. I wasn't a fan of the Dr as he started suggesting what I have before I even do the venogram. I feel as though any surgeon is going to suggest surgery as the fix. He already talked about possibly having to remove my top rib if I want to continue to swim. I haven't even had the test yet!
Every swimmer and coach I've asked have not seen anything like this. Anyone have any advice or info about this?
If you go to the blog posts of "The Fortress" (aka Leslie Livingston) beginning in the summer/fall of 2016 and continuing into 2017, you will see that she suffered from bilateral VTOS and has had quite a battle and multiple surgeries. It is apparently a very difficult condition to diagnose, not many experts around, and if I recall correctly she saw a top national doc specialist in Baltimore (the name is in her blog) - you can learn much more from reading her blog. She is a terrific person and an incredibly good swimmer, and I'm sure if you PM her she will share information on her diagnosis and the procedures she has gone through. Based on what she has described, this is not a condition that you should ignore, if it is in fact VTOS.
I know from her blog that she has been away over the holidays, but expect she will soon pop up again in the blogosphere. Good news is she has been able to recover, begin to train again, and seems to be swimming at a high level again.
Good luck and hope this helps.
I don't have anything to suggest but how much does it swell up? Could you measure the circumference before and after swimming?
It swells about .5" after about 1 hour of pool swimming and about 1" if I swim in open water for 20+ min without stopping. Less swelling in the pool as I am doing a workout on intervals and doing other drills. It only happens when I swim freestyle.
That seemed likely as Leslie indicated there aren't that many expert docs around for this condition. I believe she traveled from Pitt to Baltimore for the surgery. But before that she went through a long list of diagnostic procedures that she describes in her blog and also describes her early symptoms. You can send her a PM with any questions and I'm sure she would be willing to help. She was a gymnast before swimming, highly developed muscularly, compact, a lightning fast sprinter with a highly developed UDK, and her sister also had the problem, so she believes there is a family link. Much information is on her blog.
