| Last Updated June 29, 2005 |
My TOS :
I write this almost three years after being treated for TOS for the first time, barely saving my arm in the process. My name is Billy and I am 33 years old. I am a native Floridian and had my first symptom while I played in a professional indoor volleyball tournament in Ohio. I have played volleyball for almost ten years and not until this particular tournament did I ever have any systmes tha somethin gwas wrong. My hand became very cold and tingled throughtout the tournament and my fingers looked very pale. Not realizing the severity of what was to come, I finished the volleyabll tournament and I decided to see a doctor back to Orlando, where I lived. I went to my Orthopedic doctor not knowing who I should go to. The doctor, after some testing noticed that both my radial and ulnar pulse ended at my wrist, ordered me to go to the nearest hospital. After two days of testing and painful treatments in the hospital, the doctors could not expalain what was the cause of my pain or lack of arterial flow. The doctors tried to re-open my artries but with no success. They said nothing more could be done and said I should try to squeeze a ball for strength and just live with it. Refusing to accept this diagnosis, I continued to go to one vascular doctor after another. The diagnosis' the same: nothing we can do and I should just live with the pain. At this point I could not even tie my shoelaces without extreme pain and forget about sleeping for days at a time. Over the course of the next six months I went to seven vascular doctors with the same result: no treatment but now some doctors said it was psychological not physical. This is one of those defining moments in your life that will stay with you forever. A doctor telling me I was "crazy" so to speak...I took the doctor's advise and even went to a psychiatrist. The doctor said it was physical and determined it was not due to depression (as suggested by some of the doctors). On New Year's Eve day, a vascular doctor diagnosed me with carpal tunnel syndome and performed surgery that day in the hospital. I felt worse than ever and knew right awy that this was not Carpal Tunnel. I now had open sores on each of my fingers and I the pain was unbearable. I was forced to take a leave of absence and there semed to be no end in sight. I just continued to pray and fought daily with my inner self that I would not lose my arm (that's the diagnosis from the doctors' six months later). I was told to live with this pain as long as I could because I would most likely lose my arm. I was exhausted and had run out o foptions it seemed. I prayed and the following day I went to visit with my parents to discuss my options. Then Shands hospital, a teaching hospital in Gainesville, Fl) entered my mind. I called the Vascular Dept. ther eat Shand's, explained my circumstances and the nurse asked me to go to Shand's the next day. I knew this was going to be answer. I took the first and only x-rays that were ever taken during this six month nightmare and brought them as I did so many times before to a new doctor at Shand's Hospital. In less than five minutes the doctor diagnosed me with TOS and showed me the damage to my arterial flow due to being born with an extra rib in conjunction with playing volleyball. The doctors' re-tested me and were astonished to find that both my arteries (the radial and ulnar) were completely gone up to my shoulder area and could not imagine how I survived with so much nerve damage and arterial damage. The only option was to to do a bi-pass surgery and hope that once I the doctors open my arm up they can find some place to attach the bi-pass to. The odds of saving my arm were slim. I woke up, after a 15 hour surgery, to find that my arm was burning warm and still there. I was told the doctors worked miracles where there seemed to be no hope. My faith and determination played the biggest part but certainly these doctors performed a miracle. I was then placed on a blood thinner and was told I could never play volleyball again. Not even six months passed and my first bi-pass surgery failed. Over the next year and half, I went through four more bi-pass surgeries, all of which failed. Both my legs from my anke to my groin have had veins removed in order to try these surgeries. Now I battled not only with saving my arm but with my digust of the scars from my shoulder down. I said no more surgery and I released myself fom the hospital with 180 staples still fresh from my last surgery. The fouth surgery required a micro-hand specialist to assist and the surgery extended all the way to my wrist. Another failure!!! I was determined to heal myself...how I did not know but what were I knew this was my only hope. To summarize, a friend's mother heard of my story and offered to help me through holistic means: accupuncture, yoga and reiki. A six month therapy done with little compensation but wiht a big heart proved to be essential in getting my back to a healthy place. I had never felt my arm better from this self-healing and re-inforced positive thinking. Nothing has been easy about this experience and I certainly think that a prompt diagnosis would have prevented me from years of pain and suffering and now just trying to get back the full use of my arm, however, this is my story...a trying one that proved my inner strength and faith to shine over all the opposition. I have since seen two more great doctors in New York for check-up's and they said to just keep doing 'whatever' it is that I am doing. Almost three years have passed and I have finally gotten a pressure reading in each of my fingers (though it's only 30% of normal- it's a start). I sold my house, moved to North Florida, transfered with my job and have played in a volleyball tournament. What does the future hold for my arm??? Who knows, but I value every day and believe my experiences prepare me for what is yet to come. Perhaps my story will inspire hope and faith and strength if nothing else. I hold back nothing, knowing that only by looking ahead will I be ready for all the blessings that are just ahead. I hope this helps even one person to hold on and just keep the faith. If you need suppport my address is bilmor71@aol.com
Mount Sinai Hospital-New York TOS Dept. Shand's Hospital-Dr.Seeger TOS Dept.