Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 09-30-2019, 02:00 AM #1
Tll160 Tll160 is offline
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Unhappy About to have total scalenectomy

Hey, new to the forum... I am 2 weeks away from having a total scalenectomy . Been officially dealing with NTOS just under 3 years, but most likely in hindsight much longer. I’ve done PT, chiropractors, massage, multiple injections and nerve blocks, botox , hydrodissection, and tried every med and cream out there. Obviously, at this point there are no further options, I’ve agreed to surgery. My doc only does scalenectomy - does not remove rib. He’s rated one of top in country for this, and also a top neurosurgeon. He has reasearched way too many complications with removal of First rib without a significant positive outcome- but a severe increase in complications. Therefore, he only preforms scalenectomy. I have a severe case, the pain is indescribable. I had migraines for 5 years out of the blue, which now they believe is part of tos. It’s on my left dominant side. Did subsequently find I have cervical stenosis. The lateral aspect of my neck just throbs and like someone sliced my neck. Tender. The collar bone aches like severe bone pain. I can’t even touch my scalenes they are so tender. My left chest wall as well, which swells. Breathing hurts. Then from my neck to tips of fingers with a litany of different pain... from pressure, heaviness, throbbing and aching, stabbing, electrical, burning, tingling, numb,muscular, a bruise like feeling to my upper arm, you name it. Everything makes it worse. Laundry, gently sweeping the floor, eating - bringing food to my mouth w my left hand, writing which is severely limited... everything. I can’t sit up or stand too long, it feels my collar bone can’t support my arm. It is swollen I keep measurements, no blood clots. Can only sleep a certain way, which I rarely sleep at all. Most nights up all night wandering around. Every aspect of my life is compromised . I was forced to stop working. Any task is daunting, driving is painful. Does this sound like anyone out there? Has anyone had a total scalenectomy they can share their story? Thanks in advance
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Old 09-30-2019, 12:37 PM #2
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Much of the arm use symptoms sounds very familiar..
My symptoms like those were caused by a major overuse event - then my spasmed (like locked up) muscles pulled my collar bones up and they got stuck in the raised position..
Until a PT professor tried a top rib mobilization and they dropped down instantly.. the relief was instant for me..
No other PT or my chiro (who was quite good) had thought or tried the top rib mob.. and it was quite simple to do.. of course if your nerves are impinged & causing the problem a top rib mob may not help.. but could be worth a test if no one has tried it for you yet..

It is hard to know if the nerve is the cause of the tight muscles or it the spasmed muscles are affecting the nerve.

My muscles were not sensitive to touch or pressure at all , could be why PTs & Drs were baffled. After things got resolved I realized I had been in pain but it was more a constant dull burning, boring, fatigue type pain. Had a hard to describe buzzing, tingling internal muscles vibrations in my arms.. so they had no clue what to do with that..LOL

Can you hear a pulse like /whooshing sound in your head/ears?
I had that sound the whole time until my spasms were resolved..
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