What seems to be my main problem at this moment is pent-up feelings. I just don't see the point of talking about my condition to anyone in my life. And as for doctors, the group that actually knows what they are talking about when it comes to TOS seems to be pretty small, so it's like hey, take a number. So from all this not-talking, I get depressed sometimes. Or angry. I wish I could just give people a date as to when my life will be more normal or when I'll be ready to talk about fun things or light-hearted things. Or when I'll get to the point of managing my condition. It's been over 8 months now since my VTOS diagnosis and I'm still in crisis/triage mode and expecting an operation will take place sometime this year. And once that happens maybe then my life can go on to the next stage which I guess is healing? But I don't really tell people the truth, that the surgery may not fix everything up all rosy-like. Do some TOS people just stay in this problem-solving mode forever? I don't want to focus on this condition the rest of my life. I want to give it some treatment, and move on. And if the treatment isn't so great, oh well. I'm just tired of thinking about it. I am grateful at least I don't have pain, but just discomfort from my condition. The physical restrictions are what make me most unhappy, not having the active lifestyle I was used to having. I hate that. I also hate not being able to contribute at work the way I used to, and hearing stories about people who never returned to work. I plan to return. My nightmare would be to have something go wrong with the surgery and not be able to work. I don't even know that that is a realisitic fear, but it's one I have.

It is a whole new lifestyle. I know how difficult it was for me early on. I went through a great detail of emotions. I was very active as well, and worked as a police officer and on a SWAT team. I am 16 months since my first surgery and I am currently on disability. I have had to take a new look at my life. Early on it was very difficult, but I can tell you that I have turned the page and I am enjoying life again. Yes I can not do some of the things that I use to love, but I am happy again and enjoying the smaller things in life. I do keep some things around for inspiration, like I look at my golf clubs everyday and tell them someday I will use them again. I have gone to a course with some friends and played in a scramble, where I just putted, but at least I was out there and in good company. Your true friends will completely understand and support you.

Those feelings are called the stages of grief...
Many go thru them as it is a pretty big life stage changer.

http://psychcentral.com/lib/2006/the...oss-and-grief/

It can apply to most major life upsets like: job loss, divorce, health issues, loss of a loved one.

I suggest really doing some soul searching. What is really important to you vs. what you've attached it to. For example, I'm only 25 years old but have had TOS symptoms for 5 years. Before that, I had 2 shoulder surgeries for multidirectional instability. My symptoms started when I was 16 years old until I had surgery when I was 19 and 20 years old.

It was easy for me to get upset at everything I lost. I could no longer do sports, I had to ask for help with overhead lifting, I was unable to pursue the profession I wanted, and it's hard to have an intimate relationship when everything always hurts. What I did was sit down and really did some thinking about what it was that I really missed. To be honest, it wasn't that I missed most of those things, it was that I was bitter that I always had to ask for help and that people were afraid to touch me. Well, those problems can be solved with most cases of TOS! Minor modifications made me able to do almost everything (up until right before this recent surgery) that I needed/wanted to do! Having an open conversation with my significant other made being close much easier.

Aside from all of that, I would seriously consider not holding the full burden of TOS on your shoulders. You need and deserve someone to talk to and a shoulder to cry on (or vent to). Maybe TOS is messy and maybe there are no guarantees of a good resolution, but families are understanding and help carry the load. My mom was not happy at all hearing about what the outcomes of surgery could be nor was she happy that the consequences of not having surgery could be so severe. Neither did my significant other, or my father, or the rest of my family. But they held their heads high, supported me, and I know that had things gone terribly wrong, that I would be taken care of.

I would say that the worst part of TOS isn't the pain, or the debilitation, or the various other weird symptomology. It's the waiting. Waiting for someone to listen to you- to believe you. Waiting to get into the one specialist you think is finally going to crack the mystery open just to find out that you're getting sent to a different one. Waiting for PT to work. Waiting for a surgical date. Waiting for the surgical results. And waiting while it seems everyone around you seems to believe less and less that you actually have a problem and more and more suspect that it's all in your head. The waiting isn't forever, though. You'll get through this. Just know that you're not alone, we've all been there, and there are better things in store for you in the future even if you're sick of waiting for them.

Pretty much for Neuro TOS/chronic pain sufferers. Vascular TOS patients fair much better and often have full recovery.

Seeing a psychologist who specializes in chronic pain should be helpful.

LiveLoveandTrust, I can't say enough good things about your post. You hit the nail on head with it. You are completely right and wish I read it when I started this TOS journey. I had two surgeries already and was still feeling down until I finally sat myself down and did some real soul searching. I stay grateful for the awesome support that I have had from family and close friends and grateful for the things that I can do. I am over 16 months post surgery and I am grateful for every little improvement that I continue to see.

Very uplifting post... Nice to hear from people that can relate. Thank you