Can anyone recommend a physical therapist in Massachusetts who is experienced with TOS? I have had a couple and neither seems to have had much experience with TOS.

If you can narrow your choices down to a few places, using websites, info, word of mouth and such, then drop in to the place (when it isn’t busy) and chat up the people working there.. ask a lot of questions , find out what they do know...

I found some good ones that way..

This dr is often mentioned , perhaps his office /staff would know of some PT places for TOS.. Dean Michael Donahue, MD
http://www.massgeneral.org/surgery/d....aspx?id=16342

Dr Donahue referred me to Eileen Collins at MGH. I had surgery in December and started PT 3 weeks ago. She has been fantastic in giving me TOS appropriate exercises and I have really been seeing a difference in improved functionality and reduced pain.

Hi, just wondering which surgery u had and how long u had sx bf your surgery? Did u have tos pt bf your surgery?
I'm also a pt of Dr D and he didn't recommend tos pt bf my surgery or after. He just gave me some simple stretches to do 3 x a day.

I had a rib resection in December 2014. I was officially diagnosed with TOS in June but had had symptoms (mainly debilitating pain) for 18 months previously.

I'd seen several PT before the diagnosis and saw Eileen before the surgery but I wasn't able to continue. I started with her again 4 months postop. I pushed for the referral, Dr Donahue said he doesn't typically refer to PT. She's worked a lot with me on posture and building core strength.

Hi Julie, thanks for the info. I'm 6 wks postop Pec minor tenotomy. I really think I need direction on what excercises to do. I'm really weak from not being able to strengthen. Waiting for my pain level to go down, hoping it will be soon, then I think I will call for referral to see Eileen.
Thanks

I would go see Dr. Donahue if you are in Massachuesetts. Botox with or without PT may be more beneficial.

Can you detail what the exercises are?

Thanks

We're working on strengthening the core with supported 90-90 crunches, bridges and floor marches. Wall sits, lunges, and squats to work legs. Lots of posture work to lessen the strain on my shoulder girdle and to breathe without activating my scalenes.

She is also having me work on my control of the cervical spine with a laser headlight. It's called SenMoCo system. I put the headlamp on and aim the dot in the middle of a target. After closing my eyes, I turn my head to the side and bring it forward and see if I can make it back to the target. On good days, I make it 60-70%. On days when my neck is stiff, it's 30%-40%. I also try to trace mazes.

Next up is to see if my brain is recognizing left and right body parts correctly. Evidently, after injury or chronic pain, the brain loses some ability to identify body parts. Developed at the Neuro Orthopaedic Institute (noigroup.com), there's free trial to see how your left/right discrimination is. I haven't tried it yet but am curious! Meanwhile, I have to recover from the train trip in and out of the city for PT.

Strange! Is this all new stuff shes doing? I have atrophy in my arms causing bad cramping. Dont know if strengthening will make it worse or not.
I here ya about trip to city. I have a 35 min drive to train, then 30 min on train, then a 15 min walk to mgh, not to mention the sitting to wait to see the Dr. It can be very exhausting and by the time I get home I'm in excruciating pain!
How often do u see her?