My TOS

My TOS  : 

I have had pains, aches, and numbness on both my arms since I was 10 years old. My parents and doctors couldn't understand what was wrong with me they thought it was part of growing up or me sleeping on my arm, maybe sports I did at school etc. However when I turned 18 the pains got worse and it was effecting my daily activities. I begged my GP to send me to have an X-RAY she finally did having not believing what I was suffering. When she received the results she was shocked to discover 2 extra cervical ribs on both sides and apologised. For 3 years I was treated via medications, physiotherapy, MRI, EMG, Neurology treatments and other tests, nothing worked. The doctors didn't want to believe it was my extra ribs causing the pain. The last thing they wanted to do was operate. I was fed up of going back to hospitals in the end I demanded an explanation and my doctor in the UK had never operated with this symptom, he agreed to operate but wasn't confident and I was very scared did not want a bad scar on my neck. So I said I needed time to think. In the mean time I went to Turkey for second opinion. Luckily I found a Professor who was experienced in the illness and had done the surgery more than 200 times! He explained that it was an old method to have the surgery by the neck and that he wouldn't operate that way. He suggested the operation by cutting a 5cm transaxillary incision under the arm just where the hairs ended. He also explained the illness in depth which made it easy for me to understand and the great thing was he could speak in English. He said I would need to be in hospital for a week then I could fly back to UK. He also told me that I shouldn't lift anything more than 5kg for 6 months. I was offered simple exercise twice a day and pain killers if needed. My operation was booked for 6th May 2005. I went ahead with it and had my left side done first the operation took just over 2 hours and was carried out by 2 professors and 2 assistant professors. I was told that from my Doppler USG test the upper extremities: 50% loss of arterial flow in both arms with hyper abduction. They had to remove the extra rib and another rib and a small muscle to release the arteries and other veins from being damaged by the ribs. The operation was successful and I had great recovery. I have pins and needles mainly on my hand but every day I can see improvement. I can stretch my arms and hold things and I have to do my exercises for at least 3 months. I am really happy that I had the operation and was privileged to meet great doctors. They phone me to see how I am doing. I had to pay for this operation it cost me around £3000 but it was worth it. I have no pain on my right arm at all but I will have the operation for that side next year. Why am I having it even though I don't have any pains? It's because the arterial flow is still 50% less and it will prevent me from day to day activities if I don't. So to anyone reading this don't feel alone, its something that can be treated its just about meeting the right Doctors. If anyone is interested I can send surgery pictures even a picture of the extra ribs! So good luck to all those friends who have TOS. Hatice

Doctor Recommendations  : 

Prof.Dr. Mustafa Yuksel