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Originally Posted by rebelette
I also have Thoracic outlete syndrome. I was told that i have the neurogenic type. I was injured on the job in 1996 and wasnt diagnosed until I did so much research on the internet and finally found a doctor who agreed with my own diagnoses. First the situation was that I had bilateral carpel tunnel and my right hand had surgery right away from all the jolt sensations I had whenever I extended my right forearm.
I was still having upper extremity weakness in both arms along with pain, feeling of swellingness in both of my underarm areas, tightness like a band or a blood pressure cuff whenever i would use my arms, what feels like a tingeling sensation in my left scapula blade area and pain between both shoulder blades and many muscle spasms over the years.
I am still scared and unsure if anything can be done for my situation because my doctor says that my type of thoracic outlet is a true neurogenic one and there is no cure only weight loss and strengthening of the muscles.
The symptoms that I experience on a daily basis scare me because I dont know if there is any new pain is it all related to the thoracic or could it be something else. Sometimes I hate talking to my doctor because I am always asking him to see if any new tests have come out to better understand my situation.
You mentioned a doppler test and I was wondering what that is exactly, I might have had one but i'm not sure. I have gone for emg testing and nerve conduction vilocity testing over the years but that doesnt show anything. Now I am starting to wonder if I could have one of the other types of thoracic outlete syndromes. But anyway, I hope your surgery goes well and I hope to find an end to my own nightmare soon!!
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Rebelette, a Doppler test is an ultrasound of the artery and vein in the thoracic outlet. They have you move your arm in different provocative ways to see if they can see the vein or artery constrict. If they see this consistently, they diagnose vascular thoracic outlet syndrome. There is no real solid way to diagnose disputed neurogenic TOS. They do the best they can by doing provocative testing and perhaps a scalene or pec minor block because when they do those blocks if your symptoms disappear than it's indicative that there is some compression of the nerve going on in there. True neurogenic TOS is an easy diagnosis because the only real difference between disputed and true neurogenic is wasting of the fat pad at the base of your thumb. It's quite noticeable. From what I understand, when you are diagnosed with arterial, true neurogenic or moderate-severe venous TOS you pretty much need surgery at that point though not everyone has the same experience. Physical therapy is always tried first unless there is a medical concern that needs to be addressed. For example, until they found out that I had arterial involvement, I had been sent to many rounds of PT. Now that they found that the artery is being constricted they ideally want surgery within a week of me seeing the doctor on Friday.
I wish you the best of luck!!