I am so glad I found this forum. I don't know anybody (except for my vascular surgeon) who has ever even heard of TOS. Like many of you, it has taken several months to get to this diagnosis.

Had a whiplash injury from the right rear that snapped my head to the front left. Hadn't associated it with the pain, weakness, and numbness I started to have in my left arm, shoulder, and neck until surgeon discussed the possible causes of TOS with me. Ding! - Lightbulb!

Also, I'm a transcriptionist and make a living at my computer - so I'm sure that doesn't help.

My S/S are: left arm heaviness, aching, and numbness/tingling (especially of last 3 fingers); frequent headaches; NO pulse or blood pressure with arm abducted or head turned; constant pain at front and back supraclavicular area and left side of neck; even more pain when I try to lift anything or use my arm in an unnatural or "tweaked" position (even pushing myself up out of a chair is painful now); white to bluish discoloration and swelling of arm/hand; veins showing up all up and down left arm, but not right.

Have also had some other symptoms recently that may or may not be related: left ankle pain and swelling; transient hypertension and tachycardia ; bilateral supraclavicular swelling; similar TOS symptoms starting on the right side.

X-ray, MRI, and CT show nothing except loss of lordotic curvature (of neck), but docs can't deny the loss of pulse with arm abduction and so were willing to continue testing. Angiogram on Nov. 19th showed complete subclavian arterial and venous occlusion with nerve impingement between clavicle and first rib with arm abduction. Doc recommended first rib resection, but is referring me to a doc with more experience.

I'm scared and nervous to have this surgery because I'm a very busy wife, mother (x5), and small business owner (x2). Everything I've read so far says the post-op for this surgery is horrendous and long and that the surgery itself is not always successful. I'd love to find an alternative but doc says vascular complications make surgery necessary and opting out could be life-threatening.

Thank you so much for all of the support you have shown in the short time I've been on this forum. I'll continue to search threads looking for info. Would love to hear from anybody with similar S/S, diagnosis, prognosis, etc. Also, if anybody knows of an in-person support group in Southern California (Riverside or San Diego counties specifically), I'd love to get information on that.

Thanks again!

Carrie

I copied this here because it has details not on the other thread.
Plus we can all welcome you...

Welcome Carrie