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Founder's Message 

Welcome,
For whatever reason your search has sent you here and we hope our website will be of help to you. What you are about to read is raw and not of agenda just from much experience and observation. Whether this is your introduction to TOS or you have dealt with it for many years, it is important for you to know you are not alone in your battle with Thoracic Outlet Syndrome! We not only understand your struggles with it, but our members are enduring many of these struggles as well. I myself, having had surgery for Venous Thoracic Outlet Syndrome-Paget Schroetter's Syndrome.

Like many others, my suffering has run the gamut of a TOS impacted life. I've endured the seemingly endless rounds of fruitless doctor's appointments, financial problems, the loss of career, loss of pride and self esteem while receiving almost no answers or relief. All this, while trying to tolerate useless narcotics, dealing with a failed Workers' Compensation system, and our balky Social Security Disability program. I completely understand this, more than you'll ever know.

Then there is the pain. For someone who doesn't have TOS, I often liken it to being in a state of constant childbirth. Relentless, ongoing pain, which most people couldn't fathom or endure. Pain so fierce that there are days when I feel like I'm in a state of complete shock. Do you ever feel this way? I've described it as going through the motions of life without actually being there because the pain takes you to a whole different world.  I never dreamed that Brachial Plexus and surgical complication  could be this painful.  

When first diagnosed with Venous Thoracic Outlet Syndrome I said to my physician, "What the heck is this? You mean I have something wrong with my chest?" Then came a clot and next a pulmonary embolism. The reality of the potentially life threatening complications of TOS sank in pretty quickly. I was astounded at how serious the situation had become. After months of legal posturing from insurers and dealing with several TOS unfriendly practitioners, they told me that, unfortunately, the next step was surgery. To summarize, my surgery experience was horrible and it has left my life in ruins. Like many others, I wanted to have this surgery done and get on with my life. Consequently I made a hasty decision and allowed the surgery to be done by a surgeon who had little experience with first rib resections. Sadly, I've had repeat surgeries with more experienced surgeons which has made my complications even worse as well as adding some more. So my reality is that I probably should have gone to an experienced surgeon in the first place but this wouldn't have guaranteed a successful outcome. Better odds maybe but certainly no guarantees.

I can't empathize enough, don't make the same mistakes I did. First, if you are told that your situation is life or limb threatening, seek medical care immediately. If, however, you have time to consider your choices, think very long and hard about ever having surgery at all. Try every recourse available to you. If surgery seems your only possible solution for recovery, be very sure you've chosen a TOS experienced surgeon, one who sees TOS patients on a regular basis and has a long history of this type of surgery. While this does give you better odds of a positive outcome, again, nothing about TOS surgery is a guarantee. I didn't understand the importance of this and I'm paying a huge price for my past ignorance. I say this knowing that, though my surgical outcome has been terrible, there are also good outcomes with some surgical patients. Do not let any surgeon rush you into surgery with the promise it is going to be a miracle cure or a quick fix. Surgery may or may not help and  it can also make your symptoms worse. It is different for every patient. Many patients get better with the right physical therapy, alternative medicine, a lot of determination and/or life style modifications. Remain open to alternative, non invasive therapies. Above all, remember that if your TOS isn't life or limb threatening, surgery should be the very last resort. I personally feel that surgery is being promoted and performed at an alarming rate. This needs to be reined in and re-evaluated.

After the consequences of my surgery, the huge impact on my quality of life generated thoughts of suicide. Dealing with those thoughts, I realized there was virtually no help or support for TOS patients anywhere. It was at that moment I started the American Thoracic Outlet Syndrome Association. I'm not proud of the thoughts of wanting to end my life and I'm sure glad I didn't, but it got that bad and I felt so alone and isolated. Please, if you're suicidal or having suicidal thoughts, get help immediately! Remember that you certainly are not alone in this mess, there are thousands of folks going through much of what you and I go through on a daily basis. And now that ATOSA is here, bringing us together to share our thoughts, fears, feelings and coping methods, we have a Society of Hope.

I am a straight shooter, a let's get it done type of person and I am not fond of corporate bureaucracy, so I have structured the American TOS Association in a way that promotes a more "hands on" humanistic business approach. My pledge to you is that I will do everything I can to work with physicians, hospitals, therapists and our government to bring Thoracic Outlet Syndrome to the forefront of modern medicine.

TOS is a real medical condition, it's not in your head, your pain is real, and collectively we TOS sufferers understand your frustration with both the medical and legal communities. There are thousands of individuals with TOS and other upper extremity neurovascular disorders who have suffered in silence for years, without a voice and with few avenues of real hope. This is no longer the case! With a lot of hard work and determination we can change the course of Thoracic Outlet Syndrome to better help those coping with this debilitating condition.

There is hope, "You may encounter many defeats but you must not be defeated. In fact, it may be necessary to encounter the defeats so you can know who you are, what you can rise from, and how you can still come out of it. " Maya Angelou

I understand the perils of living with TOS and the complications from TOS surgery and I am here to help as best as I can.

Gail

Email Gail!
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