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.

Would you travel to see the top TOS guys or do you need the best nearby?
If nearby- country, state or city would helpful.
on this page in there upper section are our sticky threads - tons of info and a Drs list..
There may even be some newer surgeons that aren't listed yet..

I don't know if you has considered expert chiro care or even just an eval? Or a DO...?

things they can check or adv PT also..
Top rib - mobilisation
any joint misalignments- more than spine only
adv PTs & DCs should also consider muscles , spasms , trigger points
past posts are searchable so Drs and any info you might have a specific question about..
https://www.neurotalk.org/search.php

I'd travel to see the top doc or several for sure. Mainly just want to rule out TOS. I have been patiently waiting for things to improve since I had the Cav Mal out in January 2016 but the lingering arm, shoulder, and base of neck stuff is still there. I walk each day and do some light weights and band exercises. I am thin, fit looking and my posture is better than it was before the cav mal was out but still have some kyphosis, lordosis. I am on no drugs except CBD sublingual. As far as pts, chiros, dos, pain docs, tried a bunch, many with lots of credentials, never helped.

If the various therapists did not do very individualized care and mainly did a general therapy plan, that could be why you still have some issues.
Unfortunately even with lots of credentials, some coast along and do not really try to figure out or help clients..
If you can find providers that go the the extra mile and look at the big picture.. those are the really good ones..

I would stop the light weights and band exercises until you find out if it is TOS or not.
Those can worsen things if it is TOS.
The repetition as well as over taxing the upper back & arm muscles..not good for TOS.

Would you recommend seeing Dr Donahue? I am in Maryland but can travel.

He is one of the Top guys mentioned in members posts.