Hi all! 4 weeks ago I was diagnosed with Paget Schroetters Syndrome. I was so glad to find this community... It is really hard to find info about this! After reading some of the stories here I feel really lucky that there was a surgeon in my area who knew what I had and that my recovery has been very smooth. I figured I would share my story as I have appreciated all the info from others who've been through TOS/Paget Schroetter diagnosis.
I'm a professional dancer and aerobics instructor so I'm constantly tight and sore. We work through injuries all the time. If I had symptoms they must have been mild and I wasn't aware of them at all. I never had any nerve pain or tingling. This summer I was traveling a lot for work and I started to notice my right shoulder/pec/upper arm seemed a bit tight and achey but figured it was nothing serious and made plans to see my physical therapist a week after I planned to be home.
During a weekend show I noticed my right arm seemed slightly swollen and assumed it was a sports injury. The next day I had an 8 hour music video shoot and it was even more swollen. After the shoot I drove 5 hours home. By the time I had arrived my arm was super swollen and my husband took me to the ER.
The ER had no idea what was wrong with me. All the tests came back saying I was perfectly healthy. From midnight to 4am we went round and round with questions and tests until the Dr. ended up doing an ultrasound. He sat down in a chair and looked at me with the same perplexed and horrified expression I'm sure I had on my face as he told me I had a blood clot in my subclavian. He'd never seen it before in someone like me.
After some research he gave me a bunch of print outs about TOS and said "I think you have Paget Schroetters... Go home and tomorrow go to this vascular specialist." I didn't sleep that night. Later I was so grateful to that ER doc for not treating it like a run of the mill DVT.
The specialist explained (though I still have never ending questions) what was happening to me. He said if I wanted to continue dance/fitness that a partial rib resection would be the only way to keep it from reoccurring. He wanted to admit me to the hospital straight from is office, first to do a venogram to confirm, then clot-buster treatment and as soon as it was dissolved to do a partial rib resection. I wasn't prepared to hear that but we went for it. I made frantic calls to cancel the rest of my season, not really knowing what the recovery would be like.
I was in the hospital for 5 full days and all of it was very traumatizing. The first 2.5 days were the worst... That's when I had the venogram (scared and awake but numbed), was in the CCU because of the medication they had to give me to dissolve the clot and they basically wanted me on bed rest which nearly drove me insane. I had never been in the hospital for anything before and the nurses in the CCU are used to very sick people. I kept having to explain to them why I was there. I had the surgery at the end of the 3rd day. The first 24 hours were a bit rough but after that I didn't have very bad pain. I hate taking the usual narcotic pain meds because they make me miserably sick so I had tramadol and toradol while in the hospital. I went home the day after the surgery and took tramadol or (just tylenol) when needed for about the first week.
I had a transaxillary incision and the worst pain for me was actually the muscles that had to be retracted to get to the rib. The anterior scalene was detached from the piece of rib they removed but it was left in place in my neck. In addition to extreme soreness I had some muscle spasms when I tried to be too active too fast. I had some initial nerve tingles/pricks/stretch feelings all the way down my arm that made me pretty nervous as I'd had no symptoms like that before. My surgeon encouraged me to move the arm and shoulder as much as I could stand and said they were just from the surgery trauma.
At 4 weeks post op (yesterday!) I'm pretty happy with my range of motion and most of the muscle soreness/tingley symptoms have faded. I try to walk every day, stretch as much as I can, and have started getting massages every two weeks to help with the lingering soreness (and stiffness from that damn hospital bed!) which have rocked my world. I feel very lucky that my recovery has been so smooth. I still get tired sometimes but I can drive and basically do what I need to do around the house and to take care of myself. I'm looking forward to the day I can return to kick boxing and jumping jacks!
My latest obsession is trying to figure out what the scar will look like. The actual incision seems like it will heal well but unless my arm is up to stretch the skin out it looks like there is a big fold in the skin with the scar in the middle and I can't tell if it's because of swelling or if there is a scar adhesion in there. It also feels tight. The surgeon has been very tolerant of my millions of questions but when I asked about the scar he just kept saying "it takes time" which is not quite as scientific and precise as I would like (and yes, I know he is right and there is no way to know for sure). I hope it continues to resolve since dance costumes show a lot of the body contour. Obviously the biggest concern now is if the other side decides to act up... But at least I know what to look for now!!!
Thanks again for this community! I hope everyone is doing well and feeling better!
