Hi I’m new here and I have an observed brachial plexus compression in both of my arms which causes 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. I’ve been waking up 30 to 60 times every night for the past five to ten years. Things like shaving or brushing my teeth causes my arms to numb in 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. A doctor that I’m seeing suggested the compression might actually be in the brachial plexus region by the a/c shoulder joint.
Here’s the odd thing, I’ve never had an accident or an injury that would of caused this, especially since it is in both arms, so it is odd and puzzling that it’s in both arms. So far all my research on brachial plexus compression has only led me to brachial plexus injury yet I’ve never had an injury like this. I can’t find any information on the internet specifically about my condition but I figured brachial plexus injury might lead me to see the right doctor. I’ve had MRIs and MRA/MRVs of the chest and neck, sonograms of the neck, and three EMGs. All of them were negative for compression. So far no tests or images on the shoulder region.
Anyone know what specialist I could see for this? I’ve been to several neurosurgeons, vascular surgeons, and neck orthopedic surgeons. Is there a specific doctor who operates on this? What would my next step be?