Hi! My name is Ali (Alison), and I am raising money to help cover the expenses I’m incurring during my upcoming surgery for Thoracic Outlet Syndrome. I have a few chronic illnesses that I battle, but the one that has most impacted my life the last few years is my Thoracic Outlet Syndrome (TOS). So far my family and I have spent thousands of dollars on testing, continued care, physical therapy, and treatments. In order to have this surgery done by the surgeon that is best qualified to perform it, I have to travel to California from Illinois, manage the cost to stay for a few weeks while the surgeries and tests are performed, pay for flights, and then the follow up care of physical therapy, home care, mobility devices, transportation needs, and occupational therapy. There is also a chance that because this surgery is so invasive, and because every body heals differently when major surgery like this that involves vein restructuring and impacts one of the largest groupings of nerves in the body, that I could lose my job and thus my insurance if I am not cleared to return to work by the time my medical leave expires. Also, because I was diagnosed this past year with bi-lateral TOS (both sides), there is a chance I will need this surgery in the future on my right side as well.
While my journey with TOS officially began in 2018 when my left arm ballooned up and turned purple, I did not receive an official diagnosis until 2019. We have learned since then that part of the cause of my left side TOS could be in part due to a car accident I was in back in 2014, where a drunk driver was driving the wrong way down the highway, and crashed into multiple cars, which then hit my side of the car while I was driving. Since then I have “managed” my symptoms and chronic pain with physical therapy, lifestyle adaptations, and rest, but my quality of life has significantly decreased thanks to this disease. I struggle to do simple tasks and chores like washing dishes, showering, carrying laundry, walking up and down stairs, walking my dog, and driving, without losing my breath, my arm swelling up, or being in debilitating pain, and am constantly navigating how many tasks I can do in a day without being bed bound for days. I also haven’t been able to run in a year, which has been one of my coping mechanisms and passions much of my life, and when I was running with TOS I had to constantly adjust my expectations to manage my symptoms and subsequent fatigue and pain.
In April 2021 I was diagnosed with my first blood clot, and I have been on blood thinners for most of this past year. While my first clot resolved on blood thinners and I was able to make significant progress in physical therapy thanks to my amazing physical therapy team, I still ended up with another blood clot (multiple clots) that were diagnosed after I had excruciating pain and nausea in November 2021. I have been struggling since then and will not been able to stop taking blood thinners without this surgery. Taking blood thinners long term can have negative consequences too, like intestinal bleeding, organ and bone degeneration, and any fall or bump on my head could cause life threatening internal bleeding. It has become apparent after consulting with all of my specialists that the cause of my blood clots is structural, and that the only solution to stop the clots from continuing to form is to perform TOS surgery.
After spending the last couple of years learning more about my disease and treatment options (there is no cure), I can confidently say that I have found the surgeon that is going to best improve my quality of life and alleviate the anatomical structure that is causing more blood clots to form. Dr. Humphries at UC Davis is amazingly skilled, compassionate, and incredibly informed on the latest research being done to treat TOS. She will be performing a first rib resection, where my first rib on my left side will be removed (ouch), along with some of my neck muscles and most likely my pec minor muscle. Obviously these are not things that can be put back in my body once they are removed, and this is an incredibly invasive surgery. The recovery will be tough and painful, but I feel confident that my odds of finding long term relief and improved quality of life are exponentially higher in Dr. Humphries’ hands.
Because there are so few true specialists in the U.S. that should perform this incredibly invasive surgery, and there can be such disastrous consequences if this surgery is done by the wrong person, I would not trust just anyone that offered to perform this procedure. If done incorrectly, I could become more disabled, live the rest of my life in more pain, and even develop other painful diseases like Complex Regional Pain Syndrome (CRPS) where the body’s nervous system misfires constantly, thinking it is always being attacked, which also has no cure.
I truly appreciate any and all help and support you might be able to provide, even if it’s as simple as taking the time to learn more about Thoracic Outlet Syndrome and rare diseases.
If you are interested in learning more about Thoracic Outlet Syndrome, please visit:
If you are interested in learning more about the surgery I will be having, here is some additional information: