[JLA21]

Hello Everyone,

I am 37 years old and have bilateral neurogenic TOS. I am having a lot of nerve pain in my arms and am very suspicious of a cervical rib. I'm starting to get early signs of muscle atrophy in my L arm and want to get this checked out. I also have nerve conduction velocity tests that show evidence of decreased nerve conduction velocities in both of my ulnar nerves. I was wondering if anyone knew of any good doctors/surgeons that specialize in TOS and what were their experiences with these MDs?

Thanks in advance.

[Jomar]

New members - Please make a thread for your TOS discussion on the main TOS forum page linked below.
Main TOS page
https://www.neurotalk.org/thoracic-outlet-syndrome/

[Redwood]

The cause of my injury is a bit unusual but it would seem I share symptoms with many other participants of this forum.

[*]I had shoulder replacement surgery in 2016[*]My recovery has been poor. I had substantially more pain than the average patient during initial recovery, and persistent pain since then.[*]My pain isn't so much in the shoulder joint but the surrounding structures[*]My range of motion is very poor in both adduction (reach across chest) and abduction (lateral arm raise)[*]I have substantial scapular winging[*]I have diligently and aggressively followed all physical therapy protocols[*]I only learned a few weeks go that the surgery caused damage to my spinal accessory nerve and as a result my trapezius is paralyzed[*]I've been working so hard on the PT that my deltoids, rhomboids, and rotator cuff were masking the fact that my trap wasn't working at all[*]But for several months the atrophy in my trap has become very visible and obvious[/LIST]
I am extremely demoralized right now because everything I'm reading indicates the window of opportunity to repair a damaged SAN is less than 2 years and it's been almost 3 for me. Mine is probably not severed; it was probably a stretch injury from bad positioning either during or immediately after surgery.

For the last six weeks since my initial diagnosis I have been waiting as fast as I can for referrals to specialists who can help me but the system is really dragging its feet. An initial EMG was erroneously arranged to examine my Long Thoracic Nerve, which was obviously irrelevant. An MRI did not indicate a cyst or tumor or any other artifact that might be compressing the SAN but did not look at the SAN itself, so I still don't actually have a specific quantitative diagnosis, just a visual from a couple different docs who agree, yeah, that trapezius is obviously paralyzed so it must be the SAN that's affected.

As you might imagine, I am rather desperate to get some traction on this situation as soon as possible.

[emmachase416]

I think my Arterial TOS is likely due to a seatbelt injury, looking back.

I had other injuries causing pain and symptoms which masked the pain and neurological issues of the TOS for a few years.

It all makes sense now. e.g. how the seatbelt strap goes over the clavicle/neck/shoulders.

Emma

[SamTOS]

I don’t know where to begin. And after reading majority of posts here I think I might not be alone, so I’ll just start.
Basically like most on here I’m dealing with strange sensations going down my arms, and that’s where the similarities seem to end due to my high pain tolerance and my body’s ability to bounce for lack of better understanding.
I have bilateral cervical ribs, costoclavicular syndrome and pecminor syndrome the last 2 appear to be vascular and neurogenic. I also have a split disc in my neck C5-C6.
At present I’m revisiting the diagnosis procedure due to sustaining a concussion that caused 5% memory loss issues, subsequently resulting in me forgetting I was looking into this 15 years ago.
Firstly I will say that I don’t bruise, swell or break easily which is a problem in this diagnosis for all practitioners involved so far.
My list of incidents is a little different.
I was hit by a car at speed of 60km/hr (45m/hr) at 15, no breaks or bruising
Fell 1.5 stories flat onto my left side at 17
No breaks or bruising
Hit by car, speed about 40km/hr at 18
No bruising
Lost fingertips rhs recovery time 3 months 20yo
360kg collapsed onto my legs 2 months recovery 8 hairline fractures in my right ankle 21yo, no bruising no swelling
Tore a ligament in my right foot running slammed into the concrete with my right shoulder, no bruising or swelling
Frozen shoulder lasting 4 weeks 29yo
The last one was a concussion from hitting my head on a porch/ veranda awning of my parents place fell 8 meters or so, once again no bruising or swelling.
None of these injuries caused me any pain either.
In saying that my shoulder doesn’t function properly, it’s always clunky, my elbows constantly crack, my hands loose blood flow in certain positions, my shoulders, hands and finger go numb or tingly frequently and randomly. I’m starting to get sensations of blood flow blockages or something like that across my chest and collar bones.
I’ve gone from 70-90 hours a week in exercise since my frozen shoulder incident to now not being able to maintain my posture due to loss of blood flow in my arms. I see my next specialist in 2 weeks and will probably look into grimy cervical ribs removed, as well as anything else they deem necessary.
At the moment my mind is probably my worst enemy.

[Jomar]

Welcome SamTOS
I placed a copy of your post in the main TOS discussion section.
Here is the link to it..
Hello

[Jomar]

Please make a thread for your TOS discussion on the main TOS forum section linked below.
https://www.neurotalk.org/thoracic-outlet-syndrome/