Long time with TOS
 

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.

So sorry to hear ur story
ive had the same thoughts, but like u I believe in God n there has to be a reason for our pain n suffering. I have 2 kids that need me, n I think that why I have to keep going.
u need to find out what has to be removed n why? Get another expert opinion!
Sounds like u have venous or artirial tos.
Dr. Donahue in Boston has never had to do a revision surgery on one of his own patients.
But he has done revision surgerys on other drs patients. He is one of the top drs in the country.
Best of luck, God bless u, I'll. Keep u in my prayers.

20yrs,

As you can tell you are not alone. There are several on here that understand all the way through your last paragraph. Do not give up. He both afflicts and heals but you are correct he knows what he is doing and it is not without reason.

Please keep us posted on your progress.

Did the newest dr say what his surgical plan is?

I'm thinking it is excessive scar tissue and it is regrowing quickly.
A few people do seem to produce more than the normal amount of it and it can be very difficult to deal with.

If the surgery is to remove the scar tissue, it may become a circle of scarring & surgeries - one causes more of the other.. something to ask dr about..:confused:

When I saw Dr. Atasoy, I asked about having surgery again on both my left and right sides and he was adamant about not having surgery again. The way he talked having surgery again at least in my case would vastly increase the chance of totally loosing the use of my arms, or making the TOS worse.

The new doctor stated the cut will be in the neck area. He wants to remove a rib, and some scar tissue. Thanks for the info regarding the scar tissue. I'm not going to rush into this. We are praying and doing more research. Thanks again for the reply, will keep everyone updated.

Thanks for the response. Yes, we are praying and researching about this situation. Yes, with the LORD's help, it's all going to work together for our good. You continue to fight and pray, because your kids needs u, and u still have a purpose to fulfill. Thanks again for the reply, and I will keep u and your family in my prayers.

Thanks for the reply. Oh, I'm never going to give up. My faith in GOD is too strong to give up. I've been chosen to go through this, so I'm dealing with the good and bad. But it's all working together for my good, and everyone else on here. I want everyone on here to know there are others going through the same thing, and not to give up the fight. There's reason we all have been chosen to go through this, but we have to trust and believe he's going to work everything out.
We need this forum, because so many people on here are suffering, and we all need to chat about it. Then maybe something we all say, can keep one another going another day.

Thanks again for the reply, and I will keep everyone updated.

Motra, do u feel u are getting the right answers? It seems to me he's unsure. I think u need to seek a second opinion. As I stated in my previous post, I was told if I do not have this surgery, there is a possibility I will lose both arms. Even though that statement was made, I'm going to do my research. Trust me, the pain, coldness, swelling is an every day thing.

Also other issues, but I'm not going to rush into a third surgery. I don't know how bad it is for u, so maybe the doctor is correct. But it's always good to seek a second or third opinion, especially since your situation is not better. Keep me updated on your situation, and I will let you all know how mines turns out. Keep fighting and don't give up. I know your family needs you.

He was the 2nd opinion. He was very knowledgeable about TOS and explained to me why I was having different problems and feelings in my arms. I have not seen him for over a year, I should make a new appointment and drive back out there and see him.