Thoracic Outlet Syndrome Support Group
Thoracic outlet syndrome (TOS) consists of a group of distinct disorders that affect the nerves in the brachial plexus (nerves that pass into the arms from the neck) and various nerves and blood vessels between the base of the neck and armpit.
Hello everyone. I’m 55 years old and a cardiovascular ultrasound technologist. I have known I had an issue with my arms for a while now. Originally, I was diagnosed with PMS and rehabbed myself with improvement of flow. We have had a tough two years at my place of work due to employee turnover and personal leaves which resulted in work days starting at 6:30am and ending at 7:00pm with no lunch breaks or breaks of any kind due to patient load and productivity demands. I have become symptomatic and am now having neurogenic symptoms along with claudication at rest. New scan done last night revealed no PMS but true arterial TOS with complete arterial occlusion bilateral at 90 degrees. He now believes it’s become neurogenic too due to my resting symptoms. I have put in for immediate FMLA to seek treatment. My cardiologist/vascular specialist believes in therapy first and has not been pleased with the surgical outcomes he has had experience with post surgical resection. I myself have scanned many of these people and they are worse than before. He does not perform any of these procedures. My question to anyone is- have you been diagnosed with arterial occlusion of both arms and if so, did therapy help in any way? Regretfully, I am coming to realize my career is probably over and this is a job that I truly love and trained for. Now, I am concerned with preserving my arms and I’m scared. Any advice is greatly appreciated.
I'm sorry not to have anything conclusive to say, as I haven't even been officially diagnosed with TOS yet (my doctor says it very well could be, but he's still in the process of running all sorts of tests to make sure it's not anything else). I'm 28, and in a similar situation. My symptoms began 5 years ago when I was running a full time cleaning business without taking as many breaks as I should have either. My neck/shoulders/arms/wrists/hands are slowly deteriorating, and lately it's getting hard even to use a computer and take care of basic hygiene. I'm a trained visual artist and currently run a business selling my work, but I find myself in a similar situation to you: realizing I might not be able to do my work for very much longer, doing my best to preserve my arms, and a bit scared as well.
I just wanted to reach out, because I've learned that having a community of people around you (even strangers on the internet!) that understand your daily struggles can help so much. You're not alone! Even if you're scared, you don't have to be scared alone. We're all a bit scared together, you know?
Also, worth throwing in: I haven't had much positive response from healthcare providers in general here in the US. The prognosis always seems quite grim. But I have stumbled across a physical therapist in Norway who gives me hope. He treats TOS completely differently than here in the US- he believes in strengthening the affected muscles instead of stretching & resting them, and he's had really, really amazing results with his patients. His website is: https://trainingandrehabilitation.com. Just thought I'd pass that on!
Anyway, I just wanted to encourage you. I hope you're able to find people you can connect with and talk to to support you through this season.