I have arm numbness when either arm is raised. The arm numbness is impacting my sleep because I cannot sleep on my sides because either arm will go numb for trying to sleep on my side. I also am forced to sleep on my stomach with my arms fully extended touching my knees because if either arm is brought up to my head that arm will go numb as well and this puts unnecessary pressure on my neck. I’ve been waking up 30 to 60 times every night for the past five to ten years. I also have unexplained neck discomfort at night time. When I wake up, I’m conscious of neck discomfort and I must change positions and reposition my head on my pillow, which is happening most of night. Things like shaving or brushing my teeth causes my arms to numb in less than ten seconds when they’re raised. I’ve seen many many specialists for thoracic outlet syndrome and none of them can find any compression in the thoracic outlet region through any testing or imaging. However, there is no doubt about it, I have the clinical symptoms of thoracic outlet syndrome.

Here’s the odd thing, I’ve never had an accident or an injury that would of caused this. I am good shape physically and workout once a week. I’ve had MRIs and MRA/MRVs of the chest and neck, sonograms of the neck, three EMGs, and a SSEP. All of them were negative. While all tests are negative, my physical exam shows clinical symptoms of thoracic outlet syndrome and vascular surgeons have offered surgery to remove my first rib on both sides to decompress the area and relieve my symptoms. Yet, an osteopath that I’m seeing suggested the compression might actually be in the brachial plexus region where the chest muscle meets the shoulder. He is able to reproduce my symptoms just simply by applying pressure to my chest muscle or my shoulder muscle. He did make a comment that my collar bone is set back abnormally 2-3 inches than a normal person's which causes the compression when my arms are raised, yet I'm not sure how to confirm this. Before I proceed with TOS surgery, I would like to explore the possibility of a less invasive surgery to decompress the brachial plexus region, as recommended by my osteopath. Does such a thing even exist?

Are there any recommendations for what type of doctor I might see for what I am describing? While I’ve been to many neurosurgeons, neurologists, vascular surgeons, cardiologists, chiropractors, and physical therapists no doctor has the experience of “brachial plexus compression” and they not only could not specifically treat what I was asking, they also could not make any recommendations of who I might be able to see. Also would like to know if is the neck discomfort that’s causing me to wake up 30 -60 times per night related to TOS?

Also to throw into the mix, I have a 30 point blood pressure drop in my left arm and a 20 point blood pressure drop in my right arm when either arm is raised above my head and I look the opposite direction. I would think this is no doubt a vascular issue. Just so odd that all my tests are negative.

Anyone have any suggestions??