Originally Posted by shengggmd

Short answer is no. Arterial TOS patient 99% time present with pulsatile mass in supraclavicular area related to the aneurysmal degeneration of subclavian artery. Aneurysms in this are can do two things 1. throw clots down to the finger tips. 2 thrombose and completely occlude and cause limb loss. 1% patient can present with vertebral artery stroke because vert. a comes off subclavian artery when subclavian artery thrombosis clots can got to brain. I have seen it once. Venous TOS in additional to arm swelling can cause pulmonary embolism ( i think of the hansons brothers (the band) had VTOS with PE) . should not give you pulsatile tinnitus.

Originally Posted by Joshuamr

I'm confused.I went to a vascular surgeon today and they performed a ultrasound test which revealed no venous or arterial TOS. He said its possible that I have NTOS, but unlikely. He said that if the space of the thoracic outlet was large enough to not cause venous or arterial TOS it was unlikely that I had neurological compression. I was under the impression that NTOS was the most common syndrome presenting alone without venous or arterial. if thats the case, his statement would then be wrong? One of my symptoms is, upon elevation of my arm my fingers "lock up" and I am unable to open them until I lower my arm. He said he had never seen TOS present this way, and dismissed it as some other neurological disorder. He said I would have to see a neurologist to make those calls though. So I guess I'm left in further confusion yet again. Has anyone had a negative ultrasound with a positive NTOS diagnosis? And did everyone have to go to a vascular and neurologist separately to rule out the different types of TOS? Any input would be appreciated. Thanks.

Originally Posted by Jo*mar

Have you had EMG, x rays & MRIs, of all possible areas of concern, to rule out other possible factors?

Expert Physical therapy? Chiropractic?
Maybe a possible entrapped nerve that can be manually relseased?
My chiro adjusted my wrist, elbows, top rib, knee, foot, shoulder.. whenever I had a specific problem and needed those addressed.

Originally Posted by Joshuamr

One of my symptoms is, upon elevation of my arm my fingers "lock up" and I am unable to open them until I lower my arm. He said he had never seen TOS present this way, and dismissed it as some other neurological disorder.

Originally Posted by finz

Hello NP4,

I am one of the TOS/RSD/fibro combos. There are quite a few of us, as JoMar mentioned.

I have neuro TOS. I spent several years being pooh-poohed, being told it was all in my head, with the only treatment offered being PT with weightlifting that made everything so much worse. Years of spending 12 to 16 hours a day with ice on the area trying to numb it to get some relief.

About 4 years into my struggle, after finding this forum and suspecting my issue was TOS, I founf a vasc surgeon who made the dx and sent me to a neurologist to start me off with appropriate conservative treatment, including PT with myofascial release. That made a critical difference in my L arm symptoms and with my arm and neck range of motion. No surgery needed....woo hoo ! Now I can do gentle stretching to keep my ROM. As long as I don't overdo things (and even routine housework or grocery shopping is overdoing things), my L arm is okay. Unfortunately, I was left with what feels like a burning golfball just to the left of T1, RSD, and fibro.

Originally Posted by shengggmd

I have neurogenic type of tos and has been living with it since early 20s. I first felt the pain and the subsequent numbness and tingling in my left arm after a minor car accident. I thought at first it was just minor bruising and soreness related to the accident. As time went on these symptoms only worsened. I was seen over the period of few months by neurologist, orth, and neurosurgeons. All tests including MRI and EMGs were negative. I was told that all these may be in my head.

With much frustration and anger. I researched extensively on the topic. I think the most important thing for me is to resist the use of narcotics for pain control. Physical therapy and relaxation therapy helped me greatly, I also took on yoga for a few years that helped me to maintain good posture and strengthen my shoulder girdle. I am currently doing very well with minimal symptoms. only time I get some level of symptoms is when I spent all day in the operating room. As a vascular surgeon that treats TOS. I believe the field is full of controversies and may be even fraud, even amongst vascular surgeons.

I believe that the best way to approach treatment is through a multispecialized approach. As a surgeon I make money doing TOS surgery ( which everyone has to keep that in mind, that there is secondary gains there for the surgeons) but as a patient that is essentially cured by physical therapy I believe that physical therapy is perhaps the most important part of the equation. I would be very happy to answer any questions you all may have. hopefully, i can provide you all with some level of comfort and reassurance.