I was suggested to start a new thread, which I'm finally doing.
Please try to read all of this, if at all possible.
LONG POST AHEAD--BE PREPARED TO SIT BACK, RELAX, READ MY STORY, AND MAYBE HELP ME GET HELP. I'm so afraid/scared.
I'm young, 52, I have always been in GREAT health. No genetic predispositions except for diabetes, which I don't have. I do have high cholesterol, but have put that on the back burner because this issue came up.

There's so much info in this TOS section, I'm overwhelmed. Add to that how fearful I am that the longer I have to wait to get help, the more permanent this condition will be.

What I think has caused my issue:

About a year and a half ago, my husband and I moved to rural northeast PA because it was the only place he could find a job that paid well.
I went from being in a highly accessible suburban city outside of Philadelphia, to a town with a population of 250. The nearest place to go food shopping is a 25 minute drive. There's nothing in between me and the grocery store except a Subway sandwich store. Nearest gym is about 40 minutes away. I'm in the sticks...

I started spending more time on my laptop, on my sofa. I'm sure you can picture this in your head, me bent over the laptop. So, 8-10 hrs a day of being on the sofa, using my laptop, except when I could get myself to go to the grocery store. Not going out at all, like I used to. I was out almost every day before we moved.

I gained 15 lbs. in the 1st year we were here. I've maintained that, trying to lose it. I'm not feeling depressed, I just want to get the hell out of here, which we will be doing soon, hopefully.

Also--and I think this is IMPORTANT---my sinuses became worse than ever before. I now have severe post-nasal drip. What did I do about that? Well, the only way I could get to sleep was to sleep on my stomach, ALTERNATING EACH ARM ABOVE MY HEAD, under the pillow. For over a year.
I started feeling pain at night in the upper arm and shoulder area (when an arm was above my head while on my stomach in bed) about 2 months before I started having the bilateral upper arm pain during the day.

Chronological Summary re: doctors:

• Sept 2012: not related to TOS (...or is it??): The right side of my right foot (just the side, not the bottom) and the top of the foot right under 3rd-5th toes got numb. Couple of times, the leg was number when I arose from sitting, but not pins and needles. My right buttock numb also. The buttock and leg would stop if I became active. Doctor did x-rays and MRS-all normal. Over time my foot got feeling back (about 3 weeks). Still have issue with buttock.

• mid-Oct-2012: 1st symptoms of BILATERAL UPPER arm pain. I happened to notice my upper arms hurt in bicep area when I put them behind my back. I thought I needed stretching, which I did for 3 months, to no avail. Arms also hurt putting them above my head and trying to put on a coat or take off a shirt.

• Jan-'13: No change since initial symptoms. After searching for a DO because they're supposed to have extra education about bones/muscles, found one in Scranton, over an hour drive. Blood tests for Lyme, rheumotoid issues were negative. x-rays and MRI of cervical spin normal except for small foraminal narrowing. DO suggests pain medication, I said no because the pain is not constant. Suggests PT for pain management which I didn't want to do if we didn't know what was wrong with me--it made no sense to me at all. Anyway, I finally agreed. About 1 week B4 PT, starting having pain in tricep area as well upon movement

• Feb-'13 to Mar: PT felt I have TOS and created a program for postural improvement, with some shoulder massage. It provided some relief after about 7 visits. I could put on a coat and my left arm didn't hurt, but if I tried to put that same arm back further than necessary, that excruciating pain was there. Total of 13 visits. I couldn't do any exercises that required arms over my head because of the pain. The last 3 visits included new exercises that had me lie flat on a high table, dangling 1 arm off. I had to lift the arm to the side parallel to floor, then lift straight up backwards, and do a 90 degree bent raise, which caused tricep area pain. These exercises exacerbated arm pain, and added shoulder pain at night. Stopped PT

• Mar '13: Neurologist (Mr. "I have that too!")--Cavalier attitude, said I had a rotator cuff problem but upon touching ONLY my one shoulder and seeing it didn't cause pain, wasn't sure any longer but he was positive I didn't have TOS. EMG tests came out normal, done while resting with no pain.

• Apr '13 to now: Saw the only shoulder orthopedist in the NE PA region. ATTITUDE central! He looked at my x-rays of shoulders, turned to me and said, "I don't need to perform surgery on you, so I can't help you." I mentioned that he also is supposed to know about muscels, tendons, etc that attach to bones, wasn't he interested in an MRI? He said, "Sure, but I won't find anything." He said 1st I had Fibromyalgia, which I laughed at, and then he said it was depression (I have a psych and therapist for years--neither think this is the origin of my pain).
  Had MRI and results were normal. Of course they were! I was resting, in no pain!. Ugh.

• This last week: Spoke to my doctor. Apparently the shoulder specialist diagnosed me with myofaschial regional pain syndrome, although he never gave me a formal diagnosis while in his office. I told my doctor he was wrong, my symptoms are not indicative of that. She said, "What test do you want next?" Yeah, she really asked me that. I said that I need a TOS specialist who can diagnose me clinically, by actually touching me and moving my arms around to see when the pain occurs, etc. She's checking on someone I found in NY, but she is useless. I will keep her as my doctor in case I need to go somewhere that will require a referral.

Right now, I'm worse. The pain occurs with less movement, so I can't put my arms up as high as I could several weeks ago, and the arm pain presents itself when I put my arms only slightly behind my shoulders. Some times if I move incorrectly, the pain is so sever it lasts a couple of minutes before I can move my arm again, and it will ache for a while after that.

I don't believe I'm getting frozen shoulder, just less mobility probably because I'm not doing any postural exercises. (A guess)

Shoulder pain happens at night. I've found new ways to sleep so I can at least sleep some. Sometimes the shoulder pain sticks through during the day.

I've been reading things in here, and am so confused. I see MRI/MRA/MRNeurograph. I see others not supporting these things to determine TOS. So many links to read through, and I'm overwhelmed so much it's taken me 3 months to get the nerve up to find a forum like this.

I don't know how to find a TOS specialist. I have found that doctors who specialize in orthopedic manipulative medicine can help people with TOS, without (hopefully) needing surgery. That's how I found the doctor in NY (he's in the NY listing in this forum), but I have absolutely no idea if he's good. Ratings on healthgrades.com don't give me much to go on.

I read about the Dr. at UCLA that someone highly recommends. I swear I'll go there if I need to. I need help, it's been 7 months of pain. My doctor doesn't know what to do, the specialists are idiots and they think they're right when they aren't.

I truly dislike the western medicine approach of treating the symptoms, not the underlying cause. I want someone who wants to find the underlying cause, someone who knows about TOS and can tell me either I have it or I don't. If I don't, I'm pretty sure that same person WILL be able to figure out what I do have.

I'm not sure about a chiropractor--my gut tells me my brachial plexus (which I can feel a swelling on the right side just below my clavicle, can't feel on the left side), is being compressed.

If you've read all of this, thank you.

Whew, I got through most of the post. This is all I have to say. Sinus problems get better with a GOOD probiotic. Sinus problems are related to how much bacteria is in your gut....but give it time. It takes 4 weeks to cure this.

Then you have another problem. To me it sounds like RSD or sympathetic maintained pain syndrome. You can look that up.

I am a nurse with tos so I have been round the block couple of times.....I have sympathetic maintained pain syndrome which made me feel like I was just crazy...doctors treated me bad too....they just are ignorant and do not know about pain syndromes,,,...anyway,hope this helps...good luck

I'm not you...but if I were you, I would travel to see Dr. Dean Donahue in Boston. You can call ahead to make arrangements for exam and tests since you are travelling from a distance.

Many have tried and failed to find a competent TOS doc in NY.

http://surgerydept.wustl.edu/TOS_Consortium.aspx

http://www.instituteofphysicalart.com/ipa/referral/list


Check out these lists to see who is closest to you. The PT list isnt TOS specific but folks have found them to be more knowledgable than others about it. I have also heard that the lists are not updated that often, but once you find someone you can google them to see what they specialize in.

good Luck finding help.

If you are pretty sure that the laptop/couch combo started this, then I don't think you really need to find a surgeon yet.

I don't know if the PT you went to was highly skilled or especially talented.

Did they check your top rib/rib mobilization?
Trigger points manual release?
overall posture assessment?
do you have a better computer set up now? so not to make sx worse?

You might focus on seeking out expert body workers, advanced PT or even a chiro that has many skills/talents and does soft tissue work. Mine did and he was the most help for my version of TOS (chronic multiple RSI type)

There are many things you can do at home to repair the posture and soft tissue restrictions. Youtube is full of so many therapy types, posture assessments, you can get an idea of what might be best or who to look for.

Since you are so from a large town , I would suggest exploring Sharon Butler's website and possible getting her TOS plan (does have a 100% guarantee) www.selfcare4rsi.com
she suggests very gentle stretching to loosen the sticky tissues..
her articles are very good -
http://www.selfcare4rsi.com/rsi-articles.html

I forgot to mention that I have chronic sinusitis from allergic rhinitis with post-nasal drip. I use NeilMed Sinus Rinse to deal with the post-nasal drip.

http://www.neilmed.com/usa/products.php?=#isotonic

Can you share why you think I don't have TOS? I have symptoms of it, symptoms that many others in this forum have, and also on other social media sites. Just curious why you think I've come up with a regional pain syndrome without any prior injury. Thanks!

Thanks for the name. I'm receiving recommendations for doctors all over the U.S., just not sure what to do, who to pick. Then I would need PT, I'm sure.

Thanks for the links. I need help in finding what kind of an MD will diagnosis me. I've been to a PT who feels I have TOS, but the regimine of exercises he put me on made my condition worse.

What can you tell me about Dr. Donahue?