I’m coming up on 9 years. I remember I had stepped on a rake, just like in the cartoons only instead of hitting myself in the face I hit my brachial plexus, I remember it hurting like hell for weeks, then about a month later I did it again on the same spot. I don’t know if that was the actual incident which started my symptoms, because the onset didn’t occur for six months; I lifted weights frequently for years and had overly developed shoulder and chest muscles. I also started playing racquetball just before my symptoms peaked. It started with a lump feeling in my throat, stabbing ear pain, jaw pain, tongue, teeth, and a tight collar feeling, and then it spread to my collarbone, middle chest, upper back, armpit, index finger, forearm, and thumb, also the pinky finger at times.

CT scans had revealed stretch marks on my ride side sternocleidomastoid but the doctor felt that it had nothing to do with my pain and sent me to PT twice to no avail. I’ve seen so many doctors and tried just about everything short of surgery. I feel like one of the patients on House.

Bumping up for the 17 year TOSer to post a bit perhaps -

and also this has a lot of good info. for several new TOSers, I thought.

I don't know if you mean me, Tam,(I'm at 15years) but I'm finally a week past left side surgery and not typing much of anything for awhile! Everything right handed at the moment...interestingly I'm not flaring on that side!

I am thinking of looking for/inventing a foot operated trackball though.

I have had TOS for 2 1/2 years. I had bi-lateral rib resections in October 2006. I was gettin better steadily. I tried to go back to work (restaurant) in the summer. The pain came back, with everthing else, and even things I never had first time round.
I am on about triple the pain medication etc. than I was even before surgery. I can hardly function. The pain is unreasonable. I am going back to see the surgeon in January. I hope he has some ideas.

Bump up for Twila.

One person suggested that this post was offensive in some manner - I can see the pessimism that could be drawn from it, but that would be going against my intention and hopes. Rather, look at it from a different angle - which I MUST do if I am to survive. And of course you do not have to respond, you can be silent and that's always A-OK here. (Silent, talk, rage, cry, we love it all here.)

Like the new concept that people "live" with their cancer and manage and get all they can from life, I now view this TOS as part of me, it will probably not be "cured" and I must manage it, I must see the bright side of things and value the living things in my life (who) I love them all so very, very much.

And together we form this support group here.

We care if one person sounds down.

We absolutely will fight to help someone change their negative mindset, if they will let us in.

Remember to keep your anonymity perhaps, definitely consider keeping your doctors to yourself in case of internet pranks, but at least on an anonymous basis and for the few chosen people here you might start a friendship, this place really has a part in my treatment and survival.

Thank you all for that.

Iv had TOS since around 2000, had a fall ini 1999 that started symptoms. Only diagnosed in 2005 after insisting on MRI, Ultrasound Doppler tests etc. I do loose my pulse so I dont know why it took so long to diagnose, just one arm movement would of saved me 5 years of pain and thinking "its all in my head" (thats what the Dr's told me anyway!) I have great glee in taking in my results now. I just put them in front of the Dr and sit back and wait for their response (workers comp Dr's love this). No more im crazy or "I find it hard to believe what your telling me" comments. Its a lot better visiting these so called specialists with my results! I didnt find your post offensive at all. If you dont want to reply, dont. Every little bit of info I can find out about TOS and people living with TOS the better for me.

Hope everyone is having low pain day!

Ozzy

Tam, what an excellent attitude! This way of thinking is what keeps me feeling 'of value', because so many of my days have to be spent on me (or in bed). When I wake up I ask myself to try to do whatever I can for others and surprisingly, I CAN do small things! Small but important (giving a ride to an elderly friend, running an errand for mom, picking up trash blown in the street, etc).

Which also follows a similar idea in this thread: My pain is not greater than your pain.

I am encouraged to see so many others who have dealt with TOS for many more years than me. But that's not to say their pain is greater or lesser than mine. In Group therapy, we have a saying "our pain is equal, nobody's suffering is better than". Some of my group-ies have been abused as children, some have pins in their bones, some have mental issues... I look at them and think, gee, maybe I'm not so bad off. But they look at me and think the same thing!

Tamaras' so positive given the pain and loss she suffers. As are many, many others here. I get so much encouragement to live when I come here.


I LOVE YOU GUYS!!!

I was diagnosed with TOS in February, but I would say that I've had symptoms since 1999. I went to a doctor then because of the pain and I could feel a lump in my neck. They told me it was just scar tissue from lifting weights and it was left at that. The pain would always come and go and always get worse if my heart rate went up. My symptoms got much worse last June and kept getting worse. Now I'm in constant pain, yesterday I felt like puking I hurt so bad. I also bumped my thumb on a chair lastnight and thought I was going to pass out. The main cause for my TOS is that I have a cervical rib on the right side. I'm glad I didn't listen to the first doctor I seen, he told me there was nothing they could do for me and didn't believe I was in any pain.

I had my first surgeries 1990, but had been having symptoms for about 5 + years before that. I could never keep up with dictation in lectures at school without hideous burning pain in arms neck and hands and also always had cold hands . The bil rib extras found in 1988 when felt lump by collarbone.
Seemed to have a break for a few years and then 2004 back with a vengance!!
Hx

Dx in 1995, making it almost 14 years