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From Farm Girl to Nurse and now a TOS Survivor! Primary Diagnosis: Neurogenic Thoracic Outlet Syndrome My TOS story is long and dramatic but I will try to keep it as brief as possible! I grew up on a farm and I always had trouble doing things my brother and sister could do. For instance, in the hay field, I struggled lifting the bale up to the wagon. so I was eventually labeled the "lazy" one. I always thought the reason people didn't like washing windows was because it hurt them! Things like carrying a purse either on my shoulder or as a handbag always gave me trouble. I guess I have had problems all my life but it was "normal" to me so I never complained. read more
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A Canadian Perspective-Rachael's Story UPDATE!
Bilateral Neurogenic Thoracic Outlet Syndrome-A slow but positive surgical recovery
It started in my right hand. It was very sore and weak virtually all the time. Then the headaches started. It was January of 2003, and the restaurant I managed in my small New Brunswick hometown had just gotten through a very busy Christmas. I was doing more lifting than usual in an effort to help my team out. I thought maybe the extra lifting had hurt my wrist, but ..read more
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A Positive Surgical Outcome: Primary diagnosis of Neurogenic TOS I am not sure when I first had symptoms of TOS. I do know it was more than 10 years ago, but how much further back, I don't know.I have always had problems with my back and my neck. I chalked it up to the fact that I'd been involved in several car wrecks, and the fact that I was a volunteer firefighter and had a porchcollapse on my head. While those things probably contributed heavily to the problem, I may never know if they are what actually caused it. read more
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Bilateral Neurogenic Thoracic Outlet Syndrome: Declining Surgery Primary Diagnosis of Neurogenic TOS My struggle with Thoracic Outlet Syndrome began in October of 2006. I am a 36 year old male, outgoing, and formerly a very active person. I have played sports all my life. I am use to hard work and have often had to deal with pain. I had always thought that you went to the doctor only when all else failed, and there was blood gushing from somewhere that just wouldn't stop. I believed that people that could not deal with there problems on there own were, well sissies and needed to learn a thing or two about life. My opinion has changed! read more
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Bilateral Pectoralis Minor Syndrome~A successful Surgical Outcome: Primary Diagnosis of Neurogenic TOS-Rediagnosed with Pectoralis Minor Syndrome
My problems began in December 2005. Pain behind both shoulders, trapezius muscles, and in my neck. After having previous tendonitis problems in arms & feet I decided to start water aerobics and work it out. Boy was I wrong! The cold water became extremely painful for me and my pain got worse. I would wake up crying every time I tried to sleep. Finally I went to my Family doctor and I had the usual x-rays of neck, chest, & shoulders. They were negative except for straightening of the neck (lordosis). All blood tests came back normal. read more!
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Living with TOS and Multiple Surgeries: A positive surgical outcome Primary Diagnosis of Neurogenic and Vascular TOS 2/13/08 Doing well after second Surgery!
While working as an administrative assistant for three bio-tech start up companies back in 1999 I noticed a dull pain that started in my right wrist and gradually grew up my arm into my neck and shoulder blades and eventually consumed my left arm as well. I had extreme pain everywhere in my upper extremities within the year. read more
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A Struggle with Post Surgical Complic ations:
Primary diagnosis of Paget Schroetter's Syndrome with Pulmonary Embolism
When I woke up from surgery the pain was far beyond anything I had experienced with childbirth. Every time I moved I had this popping sound in my chest, almost as if two bones were catching then snapping as they released. The first picture is of my chest and neck about 4 days after my first rib resection. I was sent home with a drain in the front of my chest and advised that my regular physician should remove it when the drainage dropped below 50cc's. It never dropped below 180-200cc's a day. read more Warning graphic post operative images |
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Some common questions we receive about sharing a story.
Why is this so important? Great question! Often times TOS patients feel very alone, feel like they are going crazy and feel a sense that there is no hope. When a patient clicks on to this website can you just imagine what a relief it must be to see that there are others with the same problems and concerns? We've had many patients email us stating that they cried when they found this website and read patient stories.
I've gained alot of weight from my medications and I don't like the way I look now. Hey join the club! LOL No worries though. Who said it had to be a recent picture?
I don't know where to start! We recommend you think back to when you first noticed your symptoms, look through your medical paperwork and begin to develop your story from there. It can be difficult but once you get going you will do fine.
Can I remove my story from your website in the future? Sure, anytime! Although we recommend that you reconsider as your story is VERY important!
Is it okay to share my story if my case is in litigation? That's a great question. We recommend you contact your attorney for this information as every case is different.
Can I use my doctors name? Sure, as long as it's your opinion and fact. We do reserve the right edit commentary relating to physicians.
Do you do any other editing of my story? Nope, what the public sees is what you write.

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A very special thanks to Dr. Robert W. Thompson, Washington University School of Medicine, and Barnes Jewish Hospital for their initial enthusiasm and support for the 2009 Thoracic Outlet Syndrome Conference.

Presidential Patient Committee Now Forming! Create an National Petition letter to President Obama, Senators, Congress, Sectretary of Health, and all Governors! contact ceo@atosa.org

New TOS Awareness Car Magnet Now Included in Membership Package
Additional Magnets are available!

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