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.

Yes , it is very possible to have bilateral tos.

Have you had X rays or MRI to check for extra cervical ribs?
And any other bone anomalies?

VTOS (vascular tos) does have hte bes surgical outcome.
With an expert TOS surgeon ( the only ones I would consider for any TOS surgery)

Look up athletes that had TOS, of course often it doesn't say if NTOS or VTOS in those articles.
But when a nerve is involved it is a very different animal..

Use our search tool to look for other vascular & clot postings.

At your young age and wanting to be active again, I would seek TOS pros for evaluation/assessment , and not waste time with any MDS or PTs that are less knowledgeable.
If no one sent you for any imaging ye to check for actual causes, they are lacking in TOS knowledge.
You certainly don't want to be on thinners forever..
http://neurotalk.psychcentral.com/thread135.html
http://neurotalk.psychcentral.com/thread84.html

I have TOS in both arms and I think that's pretty common. A lot of the time it seems to start out on one side and progress to the other.

I am sorry about your symptoms. I have a pretty similar story. I would investigate more into paget schroetter syndrome.

Check out the Center for Thoracic Outlet Syndrome - Washington University in St Louis

This is a pretty good resource.

If you have any questions, feel free to PM me.

I have NTOS is both arms

I have it in both arms due to overactive neck extensors and weak shoulder stabilizers on both sides.

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.

Can you detail any specific PT exercises or concepts that helped.

The exercises that may help are going to be dependent upon the cause(s), however, I would think that there are probably similar deficiencies among the general population of people that suffer from this condition. Since I have vascular TOS, I will always have compression that affects my circulation. However, I have been able to greatly minimize symptoms.

For me neck stabilization exercises (specifically deep neck flexors) and exercises to address and reverse scapular winging have both been extremely helpful. As far as scapular winging is concerned strengthening my serratus anterior, rhomboids, and rotator cuff along with learning to not overuse my upper traps, pecs and anterior delts were extremely helpful. I would not suggest trying to go through this process on your own. You need an expert PT.

I have resigned to the fact that I will be doing deep neck flexor exercises almost every day for the rest of my life. If I take a couple days off from doing the exercises, I can tell.

Also, I have put and will continue to put A LOT of time into managing this condition. I spend 15 hours a week doing stretching, stability work, and strength training. I also spend about 5-10 hours a week doing cardio. Of course I was not spending this much time initially, it was a long process to get where I am, but the more time I put in the better I feel. If I spent 30 minutes a day doing exercises I'm fairly certain I would not be where I am today. It is definitely an uphill battle for a long time and requires dedication and diligence.

Thank you, I just sent you a PM. Would appreciate your thoughts.