u/Nytaza

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Good morning all, I recent saw Dr Max Wohlauer who is not fully convinced I have just TOS or TOS at all. I wanted to post some symptoms here and maybe someone can relate. I already had improper Carpal tunnel surgery so I am scared of a misdiagnosis again.

Left side - 11 years ago I had deltoid pain for a month prompted by a shit in my arm. After this it really settled into deep nerve pain under my left scapula. This is still my primary pain. We suspect the dorsal scapula nerve is pinched. I have Trap and Rhomboid tightness and pain like crazy. This all is the majority and primary pain. My left scapula wings out often and causes so much discomfort and problems moving and using my left side and get comfortable. My scalenes are also rocks and I have headaches daily. I no longer have deltoid pain and rarely hand symptoms at all.

Right side - we believe this is probably aTOS, secondary condition from a decade of guarding. I also have tight rhomboid and traps but not as bad same with scalenes and headaches. My right side has been more tolerable but in the last two years was misdiagnosed with carpal tunnel on the right and had the release surgery. I still have carpal tunnel symptoms, pain, tingling, cramping, dropping. We were able to see blood being compressed on and MRI almost confirming TOS on the right.

What makes it worse -

Sitting without a back support flares my left scapula in seconds. Laying on my side without a pillow haunches me inwards and hurts my back. These are honestly the worst. Beyond that it's lifting things, repetitive arm movements, washing hair dishes etc etc etc.

With all this Max has me back in PT which I'm not thrilled about after 11 years of PT. But I am also significantly worried that surgery might make my left side infinitely worse and might not be the right dx. Thanks in advance for the longer read

Howdy,

I'm trying to connect with anyone at any stage of TOS in Colorado. Therapy made me realize I need better support groups right now! Looking for someone who can just empathize! I live in Colorado Springs but looking for anyone in Colorado!

Hey there,

I'm confirmed bilateral, v/a/t/TOS, my left side has been compressed for 10 years at this point.

I'm currently slated to be scheduled with two Surgeons, Dr Trinidad Hernandez Vascular and Dr Ridder Nuero. I was hoping to find one surgeon that might be quicker to get scheduled with that can handle both vascular and Neruo needs for TOD/Peck Minor Release.

If you've had successful TOD - Peck Minor in Colorado, who did you see?

Thank you!

I have been Diagnosed after 10 years in chronic pain. I wanted to symptom match with someone who's had surgery and has felt better!

Current impactful symptoms,

- sharp nerve pain under left scapula

- always tight and painful rhomboids/traps

- rock hard levator Scapulars and scalene muscles

- daily headaches

- generally not well moving upper back muscles and inability to grow muscle/very weak

- tingling down arm into hand

- cannot do many over the head chores in a day

- no longer tolerate needles in back

My Botox, Vascular and Neurosurgeon all agree after 10 years of rule out and positive vascular testing I have TOS on both sides. I have done every other treatment including PT/Botox/nerve Blocks/trigger points/dry needling/OMT/etc

The doctors would like to to Thoracic Outlet Decompression and a Peck Minor Release started on my side with the longer pain duration

Can someone that's had similar TOS symptoms that's had TOD let me know their journey of healing with surgery? Thank you all 💙