[LAarchitect]

I have been reading posts on this site for a few weeks and finally thought I should make a personal post. I live in Los Angeles and work as an Architect, I have been recently diagnosed with "most likely TOS".
My story....18 months ago I was lifting some boxes (way to heavy) within a day my left shoulder joint was inflamed. Weeks later I went to a shoulder specialist who diagnosed Impingement and sent me for PT. The PT was great, they calmed the joint down and brought back mobility.....and then the chronic spasms, neck pain and unrelenting bi-lateral hand pain started. The PT had no idea what was happening...nor did the shoulder specialist...or the hand specialist. I eventually was at the Rheumatologist, and the Rehabilitation Specialist (who just pushed the Narcotics and I later found out didn't believe in TOS as a real diagnosis) but no one could tell me why my hands/forearms were hurting so bad. Prior to my injury I would have the same hand pain very infrequently and would take some Aleve and forget about it.
I had NCS/EMG an MRI of both shoulders and a battery of blood work. In the spring I started to have a strange throbbing in my neck at night. At first I ignored it assuming I was feeling a bit stressed. I then started to notice if I moved my head just a little it would stop. In the mean time I have been a few PT's (some a waste of time) ...the most recent was the the first in the medical community to ask me about TOS.
Recently I have been to the Vascular Surgeon (UCLA) and Orthopedist who referred me on to Dr. Sheldon Jordan in Los Angeles for Scalene Block and Botox. Dr. Jordan could not get my symtoms to appear in the office with the hands raised and open/close of the hands. He is suggesting we don't do the Scalene block but do Botox in the 3 sites (pec, trap, scalene) and go from there.
My symtoms have definitely changed over the past year. A year ago I had hand/forearm pain every day/all day, woke often in the night, stiff neck, shoulder pain, forearm pain etc. My current condition .... my new PT has taken charge of the immpingement of the shoulder joint (he feels this is a secondary condition caused by my forward posture), my posture is much improved, my back muscles are very developed (think swimmers back), left hand only has pain with left pec inflammation (now mainly brought on by the PT tissue break up), neck is still stiff with muscle spasms and pec spasms at the clavical, rt hand and forearm hurt almost every day, forearm pain is much better but not gone. The only way I describe the pain is as if someone is pulling from my finger tips to my shoulder, pulling so hard it hurts all along the way....forarm, deltoid, shoulder, traps, and neck. I now have days with LESS pain....it is the unknowing of what I did or didn't do that has caused this LESS pain day. The pain rollercoaster is mentally draining. I don't have any numbness in my arms...if it gets really bad I get some bubbles/tingles that run up and down my arm. At night I get tiny bit of numbness on my face above my left eyebrow while laying down. Generally I would say I have made about 30% improvement.

I am torn what to do next.....I have an appoint to see Super Joyce Wilkinson. (I really like the PT I am at but feel we have gone as far as we are going to go...I think he is dedicated but wonder if they are pushing me to hard on the strengthening without getting pain relief) Should I hold out to try the Botox? I don't want to mask any potential for progress at PT. I am pretty stressed about the whole idea of injecting the scalenes.

I am currently taking a lot of Aleve (6-9 per day). Not sure it does that much but I cannot function at work with any of the other meds. I do take Ultram on a super bad day. I take 4 mg Zanaflex at night. I just started on Cymbalta ...1/2 per day.

I have tried many things and still open to trying more.....just a matter of hours in the day and money. I have done two 12 week courses of Acupuncture, 3 rounds at PT, weekly trigger point/deep tissue massage (1 yr) and lots of self massage/stretches etc.

Things I am considering.....Botox, Chiropratic, leave of absence from work.
I realize my condition is not as severe as others on this site but any advice or ideas would be helpful. I have been alone in my struggle for 18 months with Dr's who didn't care or listen.