Like many others in this group, I've struggled with pain and failed attempts for relief for three years. On my own, I recently saw a local thoracic outlet syndrome expert. He's a really good surgeon, but was perhaps too quick to diagnose me.

In order of severity, my symptoms are (all on the right side):
- Neck Pain (where the neck meets the back).
- Chest tightness/pressure
- Light Headed
- Armpit to elbow nerve pain
- Headaches
- Muscle spasms in my neck - mostly at night.
- Jaw Pain

Multiple attempts at physical therapy have failed. Chiropractic treatment hasn't worked and nor has massage therapy. All three detect a myriad of muscle knots and functional problems but have been unable to offer me any relief.

So my primary question is, have others out there had TOS without hand pain, hand numbness, or hand tingling? It seems that everyone has had one or all of these, which makes me question my diagnosis. It surely makes me hesitate to have my first rib removed.

The hand issues probably depends on where or which nerves are involved.
I'm guessing you have mainly NTOS and not VTOS per your description..

Do you feel that the DC, PT and others were highly skilled?
You can explore our sticky threads like this one - trigger point info- Trigger point information {TrPs} for short

Did any of them focus on top rib mobilisations, forward head/shoulder postures, resolving the muscle spasms or the standard protocol of stretching & strengthening?

I'm assuming you had imaging/MRI to rule out other causes already..

Do you know the cause of your TOS? repetitive, accident, sports, family history of similar?

I would also guess NTOS, but the doc was very short with me and more focused on signing me up for surgery.

I do feel like the PT guy I was/am seeing is good. I've been to 3 of 4 before him so I recognize where he is. He's done some soft tissue and trigger point work. He's also done rib mobilizations. Neither offer much relief. What relief I do get is short lived.

I've had tons of imaging. MRIs of neck, c-spine, chest, shoulder and brain. I've also had a few X-rays and CTs. All have come back as "unremarkable".

I don't know the cause. The best I could figure is that it could have been from running. I didn't exactly have a runners body, and decided to train for a half marathon. I lost of ton of weight in a few months. I've always had poor form when running. I put far more weight on my left side. The chest pain/pressure started first. I took a few weeks off from running and it just went away. Ran a long race one weekend followed by the half the following weekend. The morning after half, the neck pain and light headed feeling started. Chest pain came back, and other problems followed. Three years later.....

I did move on from the first surgeon. He wasn't able to answer my questions and is leaving for a 2 month trip to Greece. I'm on the schedule to see another local Expert 17 August. In the mean time, I'm still in PT and doing to prolotherapy - neither of which is helping yet.

Have you ever been in a accident or any fall/hit to the head/upper body?
It can even happen during birth or a fall as a infant..no one may know or remember those instances..
hips, shoulders - level across or not?

You might benefit from an Upper Cervical chiropractic evaluation.. aka atlas/axis, C1, C2 etc... info videos can be found on you tube..
It is different from regular chiro, some chiros do a mix or regular & upper cervical..
info-
Up C Spine - A New Approach - Sign / Symptom Checklist
Up C Spine
NUCCA, National Upper Cervical Chiropractic Association

Good PT /DC /other therapies may take years to really see major improvements , especially if any aggravating activities are still being done..

Can you explain what specific examples you were doing for exercise in Multiple attempts at physical therapy have failed.

Also, prolotherapy - where are you taking it and is there any specific protocol?

- Armpit to elbow nerve pain

Does indicate nerve compression. If you are not having arm pain or hand pain, that's a good thing but people in computer positions/typist positions tend to have that more.

I have TOS and it primarily was arm pain, specifically in the tricep area. I had the rib resection which helped some but after that did have some tingling in the hand which is controlled by meds now. I have had multiple physical therapists and while my current provider (Spaulding Rehab in MA) is the best and has reduced my otherall pain levels, I often have painful reactions in the triceps to strengthening exercises and trigger point massage. Interestingly, the only other TOS patient I've met never had finger tingling either, his symptoms were focused in the shoulder.

Has anyone tried low level laser therapy? (LLLT/cold laser/soft laser)
It might be a beneficial treatment for those that can not tolerate hands on therapy.

Muscle pain, joint pain, trigger points, acute pain.

My chiro had a LLLT and it really helped for when my wrists, elbow, neck, shoulder flared up, even used it on my hip and foot pain..

It might be something to try.. it is a fast treatment per area much quicker & deeper than LED light therapy. LLLT- 20-30 seconds per spot vs LED - 20-30 minutes per area.

If you have a lot of muscle/myofascial pain it might be worth trying a far infrared heating pad.. if a regular heating pad makes you feel better, the infrared will go deeper & help with cell healing.. I've had a Thermotex Infrared Heating Pad since 2003 and use it often...

Here is an Amazon link with info on many sizes and styles and reviews if interested - Amazon.com: far infrared heating pad: Health & Household