TOS symptoms, test results, and physical exam
 

I'm finding there are many TOS doctors that are not willing to operate unless there is conclusive evidence of compression through test results, regardless of clear evidence of a positive physical exam. I would like to know for the people out, did you have surgery with all negative test results, what type of surgery did you have, and was it successful. Conversely, I also would like to know if your test results were positive, how successful was your surgery. It would be good to know for the group of people who had no positive test results yet had a positive physical exam how their surgery turned out. Compare this outcome with the outcome of people who had positive test results and a positive physical exam how their surgery went. Also, I would like to know what additional tests are out there that I haven't tried. Any reply to any individual topic would be much appreciated.

Here's my symptoms, test results, and physical exam:

Symptoms:
- Bilateral arm/shoulder/hand numbness when arms raised
- Numbness occurs in less than 10 seconds when shaving or brushing teeth
- Neck discomfort / aches / numbness at night time which is causing insomnia with 30 – 60 wakeups every night for the past 10 years

Tests:
MRI Cervical Spine: Negative
MRA/MRV Chest (with arms above my head and not): Negative
MRI Chest: Negative
Sonogram Neck (with arms above head): Negative
X-Ray Cervical Spine: Negative
EMG: Negative
SSEP: Negative

Physical Exam:
- Complete pulse drop out in left arm when raised above head and head turns to the right
- Mild pulse drop out in right arm when raise above head and head turns left
- Numbness in left and right arm when raise above head
- Numbness in occurs in 30 seconds when arms are parallel to floor and fists opening and closing

Thanks

It's difficult to get at those statistics as there are a number of confounding factors -- age and duration of symptoms being most commonly cited.

With regard to additional "tests", you might consider a lidocaine block and/or botox injections. Several studies correlate a positive response to either intervention (lidocaine or botox) with more successful surgery outcomes.

Do you have any ideas on how you acquired TOS?
Accident/injury, sports, related, repetitive or desk work?

I didn't have surgery , but at one point my hands totally stopped working for awhile, repetitive assembly job 10 hr days..total of 15 yrs.
My pulse stopped with arms outstretched, hands would turn white and red when lowered. I couldn't sleep much due to elbows sensitive to pressure of mattress, had to pad and wrap them and had to sleep on my back with arms straight along body.
I didn't have numbness or extreme pain though.

I did have symptoms moving from hands, to arms ,to neck ,to upper back, to elbows, to wrists. MD & PTs kept chasing each area vs looking at the whole picture..
Most of my sx were due to muscle imbalances and myofascial adhesion/sticky tissues. And later on when I had severe spasms it pulled my top ribs up and they got stuck in that position.. more symptoms and limitations..
but kept searching and I found a PT teacher who found my top ribs were raised and dropped them down quite easily.. Instantly felt relief.
Also at same time my chiro was doing a very helpful mix of therapies too. I told him of the top rib fix then he followed up on that when needed.

So, my point is, soft tissue problems can really do a number on us.
Sometimes surgery isn't needed , just some expert treatment providers that understand how the body can get messed up , and that they have the skills to remedy it.
Of course it did take time (2 yrs approx, some wasted time due to work comp rules etc) and I was off work when treatment really started to make a difference.
I know that is not an option for everyone.

I can do most activities now as long as it isn't too repetitive or many day in a row.
Cool/cold weather affects me in a negative way but feel pretty good in warm weather.

I never had an accident or injury, it must be my anatomy because I have similar symptoms on both arms. Supposedly this very rare which is not helping me find doctors who can explain what's going on or believe me.

Jo*mar what tests have you had done that you tested positive for?

I wasn't in extreme pain, so i didn't require in depth/extensive testing.
The standard rule in/out of x rays, MRI, EMG/NCV were all negative.
The chiro & PT teacher did the most comprehensive positional testing and history and came to TOS dx.

myofascial based with positional arterial components.
past whiplash, sport activities & repetitive job as major factors

Best tests are Lidocaine block and botox in my opinion. Read up on Pec minor syndrome too.

All my tests:emg, mri, xrays, cts were inconclusive. I got the diagnosis at Johns Hopkins based on the physical exam(pulse drops) and Scalene block(lidocaine block). I had surgery on my L side in January, and am having my right side done at the end of July. My L side surgery had a lot of complications which are taking a very long time to recover from, but aside from those, I would say that the surgery was a success. My L side is not constantly in pain or going numb any more. Different approach and surgeon planned for my right side, so I expect it to go better.