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


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Old 12-07-2020, 09:17 AM #1
CarrieB CarrieB is offline
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CarrieB CarrieB is offline
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Default New to the board, getting ready for scalenectomy on right side...

Supposed to visit my surgeon on Thursday to discuss next operation. I had scalenectomy done on my left side in August, it's rough, first 3 months recuperation are the worst before you finally start to feel "normal". In the process of doing PT exercises and my daily home chores my right first rib gave out locked up so bad I can't hold my coffee cup to my mouth Rough nights sleeping, 3-4 hour "naps" before I accidentally roll on that side and pop & pinch. Struggling with BP because of the pain, and fits of anxiety because after 18 months 5 surgeries, SAD/DCR right shoulder - lost the long bicep tendon and they found broken bone lodged in the joint, then thyroglossal duct surgery, then C6-C7 fusion, then double ulnar release, then the L scalenectomy... I'm exhausted!!! While I think I finally see a light at the end of the tunnel after my right rib gets removed, I'm just exhausted to the core! It took 15 years to finally get referred to a neurologist (last year) who took one look at me and saw something was wrong, instead of handing me pills like all the other drs did, he stuck me in an MRI, poked me with EMG and sent me to the vascular surgeon to be test for Thoracic Outlet. The results shook me - Syringomyelia T5-T7 and bilateral Thoracic Outlet. After years of being told "you're just depressed" and handed medications left & right VALIDATION my pain IS REAL!!! Left side from scalenectomy feels fantastic, fingers crossed I can get in soon to get the right side done - numbing, tingling, shocks, scapula pain, pec minor pain, all that popping & crunching of the bones bouncing off each other making my eyes water for the past 18 months
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Old 12-07-2020, 10:58 AM #2
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Welcome, CarrieB!

I'm not able to say anything helpful about your condition but just wanted to say Hello. It sounds as if you've been going through a very rugged time.

And you seem to be one of many people who find out how very wrong doctors can be. I hope that your life will start improving--and hope that someone more knowledgeable will be here to help you.
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Old 12-07-2020, 12:05 PM #3
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Welcome CarrieB.
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