Why is Thoracic Outlet Syndrome so hard to diagnose?

[@gracewith23ribs]

I get where you guys are coming from with criteria being not the best and not the most up to date and the value of imaging 110%. And, a vascular surgeon saved me by doing my tos surgery and I never would have been able to get that help if we relied on my imaging because all except ultrasound were completely normal MRI included, and that’s all that was accessible to us. So, as much as the surgeons (vascular or otherwise) are responsible, I think radiologists need to be held equally responsible for knowing the dynamic tos mri protocols and how to read them, etc. I just am protective of my vascular surgeon bc he so incredibly wonderful!! Thanks again for all you guys are doing with education here!!!!!! ❤

[@tosmri]

Thank you for sharing. Agree totally that it takes a team, and that radiologists should be a vital part of that team. Its great to hear that your surgeon persisted, and curious who she or he is.

[@gracewith23ribs]

@@tosmri I think what you guys are doing with finding ways to help diagnose this without needing as much work up for other stuff is amazing because getting the diagnosis sooner would save so much suffering and time for patients. This was one of the earlier videos of yours I watched and I’m now realizing your goal is to help people get diagnosed sooner, not to create one more hurdle and test for patients once they’re already at the end of the road-my association with tests has become they would be normal and that would mean dismissal by the ordering doctor and radiologist, and my TOS team were the only exception and only ones willing to help me…and now I know your team knows that story so well! Thus my comment here was perhaps a bit premature 😅😅 I saw Dr Bowers sports med physiatrist at Emory for diagnostic work up (ultrasound exam and guided blocks, and he ordered my brachial plexus imaging and so forth) and Dysport. He is an absolute wizard with a needle and ultrasound. Dr Duwayri (after 2 detailed clinic visits and I’m sure in depth convos with Dr Bowers, reviewing all of my testing etc) also Emory did my surgery open with supraclavicular approach. He is vascular trained and is absolutely a believer in neurogenic-he made me feel incredibly well cared for and I will never forget him. I also had a consult with Dr Salter a CT surgeon at Piedmont who does these robotically with transaxillary approach and she is truly phenomenal as well and I would have trusted her to do it completely-she is so passionate about TOS and I would highly recommend her. I was lucky to have two really great options!

[@evakhaling]

I recently had done left side styloidectomy and jugular vein decompression with Dr Hepworth in Colorado and Dr Stephen Annest was the vascular surgeon who participated in this double surgery, he did bilateral pectoralis minor Tenotomy and brachial plexus neurolysis. So far I am healing good and I noticed my overactive bladder issues have stopped completely

[@tosmri]

We are happy to hear you are doing well!

[@jbracone5933]

I am trying to find out what kind of pain people are experiencing. Is it sharp,dull, achy ect. Also does it radiate down the arm or is it localized. I am in early stages trying to see if I have it. My acupuncturist thinks it is TOS because he works on lots of pts with it. He has done the simple tests like Rooys ect to see if it replicates symptoms and it did. He has treated me like he does with his other pts that have been diagnosed with TOS. It did help take half the Pain away. But my doctor doesn't want to listen and trys to cover it up with pills. I do work in diagnostic imaging but not a technologist and we do lots of imaging for TOS and treatments. I don't want to bother our rads because they are busy and always getting dragged in different directions.But its getting frustrating already and i am in the beginning part of my journey. I have to go get reassessed weekly sometimes bi-weekly. He won't order any imaging also. He seems to think that an xray that saw something and carotid U/S was recommended that showed very little plaque. He says nothing else was shown so there's nothing wrong. I said it wouldn't show anything because it wasn't dedicated to look for TOS.Anyhow i guess i am just venting a now. Keep up the great work.

[@tosmri]

Sounds like you can use some help figuring out whether you have had enough evaluation by the right kind of doc to rule out TOS. If not, TOS should still remain open to diagnosis. Please reach out to us at www.tosmri.com/contact-us/ if you would like help with your specific case.

[@jbracone5933]

@tosmri thanks I will see after my next re-evaluation next week, plus I have an appointment with my pain management doctor next week. But I will reach out.

[@tosmri]

@@jbracone5933 Where are you located (the general area, don't be specific, please)? It sounds like you have TOS-knowledgeable docs around, as you said the radiologists do TOS imaging. That should be good for you.

[@jbracone5933]

@@tosmri Home of the stampede city in Alberta, Canada

[@tosmri]

@@jbracone5933 Cool! If you reach out to us, we can give you some names of US docs who do tele-consults, if you are interested. www.tosmri.com/contact-us/

[@chelseacarver2488]

I get harassed and I lose balance and decent