Originally Posted by twelveleaves

35 yr old female living in the pacific northwest. I was just diagnosed with Bilateral Neurogenic Thoracic Outlet Syndrome with cervical ribs. I have had TOS for 13 yrs though. I saw one local vascular surgeon and he says he believes I need surgery. I am hesitant to get surgery and want to do more research. I am exploring the idea of flying to Boston to see Dr. Donahue for a second opinion. The pain and symptoms have increased and have gotten much worse in the past 7 months since I started working a job that requires computer (laptop) use. I have given my notice at work and am resigning due to my inability to perform my job. I am just eeking out these last few weeks and popping vicodin when I get home. There is no way I could keep this up. I feel like crying some days during work the pain is so bad. Driving is another huge trigger for me. Even just driving for a couple minutes causes a flare up. I plan on filing a claim with my short term disability insurance company as of my last day of work and this monthly $ should cover my COBRA payments. It will buy me some time to sort all this out and figure out if I should have surgery or not, how I feel after not working for some months straight, if not decide if I should apply for SSDI, etc etc.

It's crazy to think that this is my reality and that I will have to deal with this for the rest of my life. It's overwhelming at times and sad. Over the 13 yrs that I have been suffering from TOS (with no diagnosis until 2 weeks ago) I slowly had to give up activities....basketball, bowling, kayaking, backpacking, driving a stick shift, art, playing guitar, etc.

The acute pain has also taken a larger toll on my general health...fatigue, brain fog, disposition, etc.

In addition to NTOS I also have a congenital hereditary blood disorder that causes me to tire more easily than "normal" people, and I also have IBS (developed after having my gallbladder removed at age 21). A few doctors have also suspected I have fibromyalgia.

Thankfully I do know that if I don't drive, don't use a computer, hold a phone to my ear, lift heavy things, work, etc I feel much much better. I could live with not being able to work and not being able to do many of the things I once enjoyed in pre-NTOS but people keep telling me it would be a shame for someone so young to accept that fate. In other words they are saying I should have the surgery as if it will cure me. From what I have read I just don't know if this is the case. I do not want to start the cycle of surgery after surgery.

Advice gladly accepted!