Originally Posted by rjewels13

I know you all can relate! I have been diagnosed with true neurogenic thoracic outlet syndrome. I saw a specialist 5 weeks ago and had a scalene block into the anterior scalene, and a pecoralis minor block.

I didn't get immediate relief that day like I've read you will get if the blocks worked. However, in the days following, I noticed improvement in the neck spasms, and frequency of the cold and numb/tingling hand.

I have also had horribled shoulder pain following the block. Have any of you had this before? I pretty much lost a huge percent of my ROM in my dominant arm where the blocks were. I followed up with specialist a few days ago (I couldn't go in the normal 6 weeks time frame b/c of work commitments) and I was told my shoulder was fine. Basically, it is a "postural" problem. What exactly does this mean? How could my shoulder be fine pre-block and completely unable to use post-block??

This whole TOS diagnosis is frustrating and confusing to me. The whole "unknown" of it all scares me and angers me. My husband asked how I will/should be feeling in a 6 months time frame and I get "I don't know". I understand this is different in each patient.

I didn't know this was a life long chronic condition, either. My husband said he got that it was "implied" to be in conversation with the doc. I didn't understand it to be implied at all my first visit.

How come I feel like I'm not being listened to as "ME" and treated for "ME" ?? Do any of you feel the same way? I really believe that my dr is good, but I'm not getting enough information to make me understand the complexity of this. All I can seem to do at dr appointments is cry and be frustrated.

I am an active and athletic person. I have went from running/playing vb/zumba/walking to completely sitting on the couch and doing nothing. I think this makes me feel worse!! I need to be able to sweep my floor when it needs swept, or reach up in the cabinet for a bowl way up high. I can not do this right now.

I realize that many others have it way worse than me but I need to know how you all cope. I keep getting the "we can get you an appt with the pain mgmt doc" speech, and I don't want to go and be doped up on meds. I have 2 children that need their mother to function. I have a job working with children that need me. I need to be able to have a life and this is wearing me down.

Have any of you heard of the alpha stim? My PT shared some info with me about it and I've researched it. The testimonials are pretty awesome to read!

Thanks for listening, and if you have any words of advice, or specific questions I need to ask, etc. please let me know!

Also, have any of you ever had your shoulder blade (scapula) move over close to your arm pit? Um, that's where mine is at.

Thanks,
rjewels13