Quote:
Originally Posted by omegrabian
8 months ago, I went into the ER because I knew something was wrong. I am a healthy, athletic 28 year old female, who did use the nuvaring. I was diagnosed with a major blood clot in my right arm. I was immediately put on Xeralto and declined to have any surgery.
My vascular surgeon blamed it on my birth control, and told me to resume all regular working out. I do a lot of pilates, yoga, boot camp. When I went back to bootcamp a month later, I worked out hard and developed the same pains in my other arm. When I went in for an ultrasound again, I asked the technician to check my left arm this time, since I had the same weird pain. Turns out, I had another blood clot that had developed in my left arm. This time I recognized the pain and was able to catch it before it got as big as the right arm.
My hematologist put me on eliquis 5mg twice a day and another vascular surgeon told me I had thoracic outlet syndrome in both arms. Although rib resection is an option, no one suggests it because it is a heavy surgery, especially on both sides. I tested negative for lupus.
1. Does anyone have more insight on this? Can it really be TOS on both sides? I feel like since I am not wanting surgery, I am in limbo.
2. Is there anyone I can see that can show me HOW to workout, now that I am not allowed to lift my arms above my chest level?
This has really been a major change in my lifestyle, and I am looking for answers...swelling is evident in both arms, even with 8 months on blood thinners. Pain in my shoulder is definitely strong but I can bear it.
|
I have neurogenic and vascular TOS bilaterally with moderate compression of my subclavian artery even while laying down with arms at my side. I was very active prior to symptoms and diagnosis, but it took a couple years to even be able to run again (as my circulation is permanently compromised) because it is difficult to find medical professionals capable of properly treating the condition, as well as the slow progress once you start managing the condition.
Currently, I exercise at least 5 days a week. I don't think there is anybody that could say I am in anything but excellent physical shape now. I can do any physical activity. I lift heavy weights, play sports, bike, run, yoga, etc. I still have to pay close attention to my body and have made many adjustments to daily life but my symptoms are very well managed.
Where do you live? A knowledgeable physical therapist can make a huge impact in your management of the condition. I'm happy to provide you any input that may be helpful, especially if you happen to be close to Chicago, which is where I live.
FYI - I refused surgery even though it was offered as an option, though my doctor agreed it should only be chosen as a last resort if all else failed. I also had some swelling in my right arm early on, but it was simply compression of the subclavian vein, not a blood clot... well at least AFAIK. Also, I could not lift my arms above chest level before- now I am able to do all kinds of overhead activities.