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


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Old 09-02-2017, 01:23 PM #1
needtoheal17 needtoheal17 is offline
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Join Date: Sep 2017
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needtoheal17 needtoheal17 is offline
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Join Date: Sep 2017
Posts: 3
5 yr Member
Default Need advise on consultation doctor for TOS

Hi,
I wonder if I have TOS and I would like to see a doctor for an opinion. If you had to see one first, who would you see? Part of it is I have a complicated neurological history.

TL/DR:
T4/5 bleeding Cavernous Malformation and T11 Syrinx
2010: Lots of weight training, Shoulder pain, I had a accident moving a desk down stairs and it fell and damaged my left upper trapezius catching it.
2011: debilitating left shoulder neck trap arm pain, later both sides.
2013: full body pain, difficulty sitting down, walking
2013: had controversial surgical detether spinal cord at L5/S1. It was supposed to decompress syrinx, still have syrinx, sitting was easier but I still had severe leg pain that came and went (probably bled then I healed from bleed as it reabsorbed)
2016: The problems I was having was determined to be bleeding cavernous malformation, removal of cavernous malformation by Barrow and Dr. Spetzler
2017: some remaining hemosiderin at T4/5. I still have the neck shoulder arm pain, atrophy in my hands and it is still very bothersome. However this should not have anything to do with the T4/5 Cav Mal which should be nipple line and below. MRI with contrast is clean now with just hemosiderin t4/5, no sign of cav mal, no sign of tether, same small syrinx t11. No disk problems. I have had Brain, Cervical, Thoricac, Lumbar MRI w/wo contrast and a thoracic angiogram to look at the cav mal prior to surgery.

When I look upwards I have pain and spasm in my neck and traps and my triceps burn when I reach for anything. I have trouble holding my arms out or up. I have a lot of spasm at the base of my neck on the sides and the front. Some muscles in my hand, notably thumb have atrophied. My hands hurt a lot sometimes.
The reasons I wonder if I have TOS is:
1) history of heavy weight lifting
2) I had messed up posture each time I had a bleed from the cavernous malformation, after removal I stood a lot straighter
3) I worked a job in 2010-2012, one year of which was entirely reaching overhead to hang things, and during that time I had severe problems
4) carried a heavy backpack in college 2004-2010, can no longer wear one.
5) in 2010 had a heavy desk fall on me when person above me carrying one of it down stairs let go and I caught the load with my left arm underhand, jerked down on my trap.
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cavernous, malformation, neck, pain, syrinx


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