Greetings all,

This is my first post, and I wanted to share my experience and ask some questions of the more experienced TOSers.

Quick overview: Symptoms started 7 years ago during pregnancy and progressively worsened. I was diagnosed a year and a half ago with bilateral neurogenic TOS by George Thomas in Seattle (veteran of TOS research who is in his mid 80's). As I read about TOS, I literally wept as I finally had a condition to tackle. Like many, I had been through years of physical therapy for "possible slipped disc", massage therapy, and chiropractic treatment. By the time I went to surgery, it felt like there was a touriquit on my arm much of the time and I had so much trouble sleeping. My scapulas are winging and the muscles over my scapulas and in my hands are showing atrophy. My diagnosis was actually confirmed by nerve conduction studies showing clear blockage of nerve at thoracic outlet...I hear this is a rare thing to have undisputed neurogenic TOS...poo on all those medical professionals who think this doesn't exist!

We are military moved from Washington State to California, so I had my surgery at Stanford University this past Tuesday...4 days ago. Very experienced and terrific doc (Jason Lee). First Rib resection, Scalenectromy, neurolosis. Dr. Lee said my rib was extremely flat and the brachial plexus had become "attached" to the rib. I know I can't count my chickens yet, but literally right after the surgery I felt like I had a "new arm." I slept for the first time in years. I was released the following morning, and the second night, at home, I woke up and cried with joy because all of my symptoms are gone. Day before surgery my shoulder was so impinged I couldn't tuck a shirt in. Day after surgery I could put my hand all the way up to bra line behind back. My improvement is extremely dramatic. I'll be having surgery on the other side in a couple of months. Right side isn't as bad, but is well on its way. Oh...I should mention that just 16 hours after surgery I made a 2 hour ride home from the hospital with no pillows and no pain other than lung/breathing pain that continues. 38 hours after surgery I walked two miles along the beach. You could say I'm doing well! But my recovery is not without incident....

I ended up with a small pneumothorax which wasn't of too much concern to the medical team, but I was really short of breath and talked to the resident on duty today who asked me to go to local ER for chest Xray. Pneumothorax is healing, but I have a "massive" pleural effusion (fluid buildup in lung lining). Was sent home as being right on the cusp of siphoning off the fluid...again wait and see if worsens. I really feel the effects when I lay down...pain when breathing and short of breath, but nothing too scary. Anyone else suffer an effusion?

The thing I really wanted to ask you veterans about is fluid retention. I have gained almost 10 pounds on my 125 pound frame in the last few days. My legs have water on them, even my eyelids are puffy. Any of you experience this? Would put my mind at ease if I knew this was going away soon. I also have lots of air in my neck...hoping that begins to wane soon.

Thanks for listening all...and for sharing. I read this forum before surgery and it helped me prepare for some worst case scenarios. I hope my experience continues to be the miracle of healing it has been so far...will keep updating my progress.
Holly