Originally Posted by 20YrsTOS

Hello Everyone,
I've been reading some of the threads, and your stories is my story. I was diagnose with TOS in 1993. Had surgery a year later. My symptoms at time were, cold hand, swelling fingers, right shoulder pain. All of this on my right side. I went through all the test, and it was determine I had TOS. I was rushed into the ER, because my right hand turned blue, and was cold. They stated I had an extra first rib, and they did the surgery under my right armpit. I was okay about 4 to 6 months, but after that, some of my symptoms returned. I went back to the doctors, and just like some of u, they didn't want to see me anymore. I was very, very hurt and angry. I was about 21 or so, so I felt like my life was in shambles. I went to other doctors, and they put me through the same test, but no one still did not want to help.

Years and years went by, and my symptoms got worse. I was able to finish school and work, while still having pain, swelling, involuntary movement of the arm, etc. In 2002, I went to see a Dr Harold Urschel in Dallas. I read and was told he was one of the best in TOS. He examine me, did the arm raise, notice my blood flow slowed down, saw the involuntary movement, no strength, couldn't make a muscle, etc. All in the same right arm and hand. He decided I needed surgery. He performed surgery on my right shoulder, stating he was removing part of the bone that was pressing on the nerve, and he was going to remove some scar tissue from my first surgery. Just like the first surgery, went through all my PT, and felt okay. Just like the first surgery, gave me instructions about doing my own exercise at home, and I went home. Everything okay for about 4 to 6 months, and things started to come back. Called his office, and they didn't want to see me anymore. I was Devastated!!!!! I ask why, and she hung up the phone. By the way, if u were thinking about seeing Dr. Urschel, he's no longer with us.

From that time up to now, things have gotten WORSE!!!! Worse is saying it lightly, very lightly. I've lost jobs, can't play sports, and do other things I enjoy. My arm pain is worse, strength gone, pain in the chest and neck, headaches, cold hands, electrical shocks, arm movement, muscle dystrophy, shoulder pain, etc. Now it's affecting my left arm. I went to see a Dr. Lin in Houston about two weeks ago. He informed me, since I've had it about 20 yrs, my case is very, very serious. If I don't have surgery AGAIN, I will lose both arms. He's suppose to be one of the doctors that knows about TOS. I am schedule for surgery in about three weeks or so, but still praying about it. I will keep u all informed.

For those of u out there dealing with this, DON'T GIVE UP!!! I've been through the thoughts of committing suicide. I've been through the period of feeling lonely, depressed, etc. But my faith in GOD got me to this point, and he will continue to get me through it. It hasn't been easy, but life isn't easy. Keep researching, keep asking questions, and DON'T GIVE UP. We all don't understand why we were chosen to go through this, but "All things work together for the good". U all might not understand it now, but there is a purpose behind it. U all take care, and we need to encourage and pray for one another.