| Last Updated July 13, 2004 |
My TOS :
During an exam in 1996, a lump was discovered in my left subclavian area. After 8 months of seeing specialist, exploratory surgery was performed, which removed a mass of matted lymph nodes. After 7 years, quite a bit of scar tissue has developed. The area was always sensitive after that. In the past 6 months, my left arm (I'm left-handed) started turning blue when I would walk any distance. I went to my regular doctor who ordered an MRI and X rays. Nothing came of it. He sent me to see a neurologist because of the numbing pain in my hand and shoulder. The neurologist prescribed neurontin which made me lightheaded and the feeling that I was not in my body. I stopped taking it. Then my doctor sentenced me to a month of physical therapy which did nothing but aggravate the situation. I started noticing that my arm would be blue just sitting in a chair. I went to the doctor who discovered I would lose my pulse in my wrist when my head is turned in the opposite direction or my arm is lifted over my head. More physical therapy and a cervical rib X ray. Nothing came of it but more physical therapy. I got fed up and asked for a referral to cardio thoracic surgeon. The doctors basically had been telling me it was all in my head. Once I was seen by the CT surgeons, they confirmed that I had some kind of blockage of my subclavian artery. After another MRI, ultrasound and then an arteriogram, they discovered that my artery was being pinched between my collarbone and my 1st rib. My surgery is scheduled at National Naval Medical Center on January 16, 2004.
U P D A T E !
Well I had my surgery on January 16, 2004. They removed my first rib and a cervical rib. Before going into surgery the doctor showed me an Xray that showed the extra cervical ribs. Previous Xrays never showed them so I was really surprised. The surgery was supposed to be 2 hours but turned into more like 4 hours. Afterwards the pain that I felt was the left lung area. I felt as if someone had my side in a vice and was tightening it. I think I hyperventilated in the recovery room. I felt like I was going to die because I couldn't catch my breath. I stayed in the hospital for three days. The doctor said that the chest pains would go away after awhile. Also I started feeling numb from my shoulder to my hand. After a week, my hand is still very weak and numb. My arm feels as if I had a bad sunburn and someone is touching me. The doctor says its just because the nerves to my arm are inflamed. Its difficult for me to tip my head back and raise my arm over my head. Otherwise I'm doing fine.
U P D A T E I I ! !
I had a follow up appointment on 5 March with my CT surgeon. He showed me my Xrays and said that the lump on my chest was just my 2nd rib being more prominent. He also said that he couldn't help me anymore and that I have a 50/50 chance of getting better. Unfortunately, the surgery didn't work. I still have problems on my left and right side as well. He said that he wouldn't operate on my right side (even though I have a cervical rib on the right as well). Since the surgery on the left was unsuccessful that surgery on the right would be pointless. So now I'm going through physical therapy to regain some movement in my left arm again. I'm still on narcotics and taking 800 mg motrin 3 times a day to help with the pain. I'm doing some research and talking with some surgeons at Johns Hopkins in Baltimore, MD. There is a vascular surgeon at JH that has performed several TOS surgeries with great success. She has been able to block some of the nerves in the arm which helped patients not have pain after the surgery. Her name is Julie Freschlag. I'm in the process of getting a second opinion from her about my TOS. I have a lot of hoops to jump through in order to get referred to JH but I'll keep you up to date as I get more information.
U P D A T E I I I ! ! !
Well after three months waiting I finally saw DR. Freischlag. She thinks that after a year I will be completely better. She doesn't think that I should have the ribs on the right side removed until a year after the surgery otherwise I may have complications. Anyway, I will let you know how it goes in a year.
Dr. Julie Freischlag, Johns Hopkins University Chief of Surgery