TOS presenting "differently" Please weigh in!
 

I could really use all the help I can get. I can find no one who seems to match my symptoms. I used to lift weights often and loved it. One day while doing triceps kickbacks I noticed my left arm had a black bruise about the size of a lacrosse ball. No pain, no weakness. I had a small (1 on a 1-10) feeling of impingement (?) in the middle of my inner left elbow but that was it. As soon as I put the weight down, my arm returned to normal. Over time, I became weaker and statred having arm, neck, collar bone and shoulder pain and grew progressively weaker. I gave up lifting heay weights and turned to barre. Barre uses 1-2 pound weights and I was able to get through with residual pain afterwards, but I could still finish the class. About two months into barre, I noticed my right arm turning the grayish-black color in the exact same place on the back of my arm. I even noticed that I had obvious superficial veins on my back when planking. Over time, I grew weaker and weaker and always had pain when lifting my arms at all. Now I can't do any of it. I can't hold up my arms for the duration of a workout with NO weights! I spent 4 years showing pictures of my discolored arms to 16 different docs. TOS was suspected but the segmental Doppler waveform analysis and segmental blood pressure tests were normal. Several vascular surgeons told me they did not think I had TOS. At the end of my rope and frustrated not being able to work out, I saw the TOS specialist again. This time it showed up in testing. Specifically, abnormal waveforms were observed in the Doppler analysis on the right and the left upper extremities during military left and right head maneuvers when holding a 7 pound weight. The specialist said I have arterial TOS but without thrombosis or a clot. Essentially, a form of Paget Schroetter. He said I was a good candidate for surgery. Made sense to me until I sought a second opinion. Another TOS specialist said no way I have arterial. Maybe neurogenic. So, I had a upper extremity venous duplex scan. It showed a velocity increase in the right subclavian vein when my arm was abducted. It also showed left decreased phasicity in the left subclavian vein when my arm was abducted and a velocity decrease in the left axillary vein with abduction. When my arm was held back as in a triceps kickback, the velocities increased in the left axillary vein. I have done traditional TOS PT, acupressure, manual PT, etc and am no better. I have no numbness or tingling but have a constant heaviness in my left arm. I also have pec pain on the left. All MRI's of cervical spine and both shoulders show nothing out of the ordinary. All blood work has been fine and three ultrasounds of my arms have been clear. What in the world would cause my arms on both sides to discolor when lifting and then go back to normal? I've had pulse loss on some exams and not others. I seem to fit the TOS spectrum just minus the numbness or tingling and have no issues to speak of with my hands. My rib removal (left side first) is scheduled for June 9th. I'm going to attempt to post pictures. My arm almost always has to be extended behind me or wrapped behind my back for the discoloration to present. Thank you for your feedback!

Did the TOS docs mention that a certain percent of normal population do lose pulse in certain positions?

Is it possible that the neck/shoulder/chest muscles are hypertrophic/bulked up, and that is some of the cause in the positional sx for you?

Since you did PT already , have you considered seeking out and consulting with an expert chiropractor or body worker?
I did have the best results from a multi talented chiro and also a teacher of PT.
Did PT check for raised top rib , or do any rib mobilization? But some get little relief from rib mob , just depends if it is a factor or not..

Many of our members that lifted weight previously , did have to find other fitness avenues.. more focussed on flexibility, postures and whole body wellness..

My two cents....
 

My problem is different but some what similar....:confused: I have a jaw issue and my neck is what turns that blueish gray color...but then I can't move my arm at all....and my MRI came back clean. It eventually went away...took over 8 months...then it came back; So the Neurologist said not TOS but CRPS....don't know if this helps but kinda the same.....:hug:

Thank you
 

Thank you! I do know that some TOS present with no pulse loss at all and my muscles are definitely not hypertrophic. It's interstimg you mention seeing a chiropractor because I've thought seriously about seeking one out. I guess since so many docs have told me that all of my MRI's look ok, I haven't felt an urgency but would appreciate the second opinion so I might just go that route. I have purchased an intelliskin sports bra from Amazon to help hold my shoulders back and am waiting for it to arrive. My PT did not look for a raised first rib and an extra of my chest was free of extra cervical ribs. I appreciate your thoughts on this. Thank you!

Good luck to you! Seems like such an odd place to discolor! I'll check the symptoms for CRPS and see if there seems to be a fit.

Thanks and np....I felt I understand because I couldn't even do squat with my arms up front...like I mentioned it 'eventually' allowed me to move my arm and I can do some stretches with a yellow band....Please keep us posted on your situation.....:hug:

What do you mean by traditional TOS PT? What exercises or specific muscle groups were targeted?
Ie which groups were stretched and what was strengthened?

Scalene stretch, pectoralis stretch, thoracic extension, arm wall slide, rowing and mid trap exercises, chest stretches and various exercises to strengthen my shoulders.

Another picture
 

Here's another picture of my arm after a spinning class. My arm is bent behind my back as if trying to scratch my mid back. Hopefully it will come through.

Often traditional PT that uses a pre-set plan or cookie cutter protocol.. will make TOS worse.

You need an expert PT ( or DC) or both that will adjust to what your body needs for each session.
- pain relief and symptom reduction first before anything else...
then slowly add more active participation as tolerated.
If pain or sx increase then the activity must reduce back to a non aggravating level.

And be aware of delayed pain/sx. this takes awhile to figure out for your self..
but it is a crucial part of working toward recovery..
baby steps forward works best....

Jen, did you do anything for the neck? Do you have a forward head posture? That can be a key issue.