I have had what I now know to be tos for about 10 years, since I was in my late teens. It started with a loss of pulse/ heaviness in left arm when used overhead weightlifting. One morning about 8 years ago I woke up with a blue swollen arm, went to Dr, they said there was no clot and that I probably tore a muscle working put. I now realize I probably had some sort of effort thrombosis. Took about two years of going from doctor to doctor with my continued symptoms to finally get diagnosed with tos on that side. Not even sure if it s arterial or venous or what, I honestly don't remember what tests were done. Did pt, not a lot of help, but over the years have come to terms with that side being easily fatigued, losing pulse when overhead, and larger than the other arm. I don't have pain in the left side, I mostly just feel some mild swelling when that side is overused.
About four years ago, I injured my right arm when it was yanked on too hard. Symptoms soon began on that side, with a different feeling. That arm gets cold and heavy, there is some pain and mild tingling and I can feel the pulse go out of the arm even when the arm is just at my side. Again took about two years of doctor runaround to get diagnosed on that side, with no specific diagnosis, just generic tos. Doc only did an ultrasound and a test with blood pressure cuffs/ arms overhead to diagnose tos. Pt again which helped and my symptoms were manageable for a little over a year and a half. Have been lifting weights this whole time because no one warned me not to... worried that the weightlifting has now caused additional damage to vessels, although symptoms on left side have remained the same for the last 5 years or so.
Currently I have just given birth to my second child and the right arm is in a bad flare again, cold, painful, swelling around armpit area and in hand,etc. I also have this weird feeling of fullness/ pressure in my head at times. It hurts to take a deep breath and when I yawn or sneeze I can feel the blood flow to my right arm get cut off and then start again. Think this is due to involvement of the scaleable muscles, not sure. Called the same doc as last time but he can't see me until August 20. I don't feel super confident about seeing this guy again, he will send me to pt again which I am open to but haven't had an easy time finding someone around me who is knowledgeable about tos. I have been reading the boards and read about dr. Donahue in boston, which sounds promising since I live about 45 min away, but I tried to call and he is out of the office for the next week.
I'm just wondering if anyone has any similar symptoms/ what they did to improve etc. Dr. Donahue seems to have a whole physical therapy program in place which I am open to, does anyone have experience with that? Guess I'm just a little nervous/ freaked out... the blood flow symptoms are what bother me the worst and make me very nervous, especially with this whole head pressure feeling. I don't want to have to have surgery, especially with a 3 month old and a 3 year-old care for and a career as a teacher, but I'm terrified of clotting or any other complications that can come with this kind of tos. Any advice/ suggestions/ help/ support is appreciated!