Terrible symptoms but no definitive diagnosis... Do I have TOS? Frustrated &depressed
 

Hello everybody. I have a long messy story so please bear with me.

Over a year ago: I had chronic shoulder pain over a year ago and found out I had impingement of my rotator cuff muscle. After months of Physical Therapy and rest the pain remained.
My pain was only present in my shoulder at my rotator cuff and only present if I tried to exercise or use my shoulder.

5 months ago (Aug 10th): After a year of rest and some physical therapy, I finally had surgery in my shoulder. My ortho did a subacromial decompression and distal clavicle excision. A bony spur was removed. He said The tear in the supraspinatus was minor and didn't require surgical repair. He also mentioned very minor damage in my labrum that didn't require repair but just needed to be "cleaned up." He says everything went perfectly and the surgery was a success.

I have been following through with physical therapy 3x a week and am doing everything right. But about a month after surgery, I started having a burning/inflamed feeling on the lateral side of my neck. This was soon accompanied by tingling pain in my arms (especially forearm and index finger)
I NEVER had these symptoms before my surgery. Nothing even remotely close to this

The RC area itself hurts occasionally, but I am moreso experiencing the tingling pain in my lower arm/forarm and really bad inflammation on my neck.
(all symptoms are worst the day after physical therapy)

I spoke with my ortho and he RIGHT AWAY said "This has nothing to do with your surgery....its incidental...You have cervical spinal issues

My ortho said to take the conservative route and have physical therapy/traction therapy done. Im worried and also confused as to why this is happening right after my subacromial decompression surgery.
I followed my ortho's advice and had cervical traction done and continued with physical therapy

The most frustrating part for me is the fact that I can't diagnose my problem.
My Ortho thinks its something spine related. One PT thinks its scar tissue after surgery and overall weakness of scapular stabilizers (even though i have fantastic ROM!)...my newest PT thinks some of my muscles are overcompensating because of overall weakness, and perhaps the muscles are impinging on my nerves?...

It has been 5 months since my surgery and Im still having these terrible smptoms all on my right side (same side as surgery):
-Pain in my shoulder
-Tingling pain in my elbow, forearm, and even fingers
-Arm feels like it has poor circulation
-Neck feels inflamed/painful on the right side
**All symptoms are worse the days after physical therapy**

I have been to my ortho, received a cortisone injection, tried cervical traction, active release therapy, and been to 3 physical therapists.
After reading about Thoracic outlet syndrome, I am starting to believe this might have something to do with it.

At this point I am extremely frustrated and depressed. I just want to know exactly what is wrong so I can pinpoint the problem and try to take care of it properly...

Since Dr "says" it is spine related - does anything show on xray or MRI?

If no MRIs or no fairly recent then that should be the next step- Imaging of Cervical spine & upper T spine - if for nothing else to rule out the spine as a cause.

the delayed pain is often a TOS thing.

Does it seem like you have highly skilled PTs - ask for a new evaluation from the top PT there.

I had a cervical MRI done which stated a very minor posterior bulge at c2/c3. My PT and primary care doctor think this is an incidental finding and a spine mri in anyone will find a minor buldge.
But my ortho insists this is the problem and it incidentally started happening a month after the surgery he performed...

I spoke with another neurologist and he says it is not a herniation, just a minor bulge. Not sure if this has anything to do with the matter at hand. My ortho seems to think it does, but nobody else does.

What types of things are they having you do in pt? Many "conventional" therapies like therabands, strengthening, etc make tos symptoms worse. I bet most people here have experienced bad therapy of some type :(.

Band exercises
-Lat pushdowns
-Internal rotations
-External Rotations
-Tricep pushdowns

Cable lat pulldowns, Cable rows

Weights: Shurugs, bicep curls, serratus push-ups

Keep in mind this was all protocol for Physical therapy after my rotator cuff surgery. But my neck/arm symptoms are making me think something isnt right...

My newest PT has toned it down much more. Now all im doing is lat pushdowns, and internal/external rotations.
I also spend a good amount of time on the electrical muscle stimulator.
Unfortunately, I am still experiencing symptoms after therapy..

hmm, if it is TOS or something like it...
the bands & weights and such (active on your part) type exercises should wait until all, or at least most, of the symptoms /pain/tingling are resolved by passive means first.

What kind of muscle stim? do they use IF stim (interferential (sp) ? or another type? IF stim is nice as it can be set higher without the tingle /zapping of other stims - and if it has the right options/settings it does feel like someone is massaging all over your back - if it used on the back anyway.

Any massage?
manual trigger point work? *If TrPs are present they have to be released before any stretches or strengthening will help*
posture evaluation?
forward head/shoulders?
passive stretches to open the chest/drop shoulders?
my profile has pics of 2 styles of those in my album - they are up in the useful sticky thread also.

I'm not sure if there is any time line for scar tissue issues.
I think some tend to have it and some don't have problems from it.

Sharon Butler's gentle stretches were a real help to me - plus she has really good info about fascia &how it gets damaged and how to repair it.
she has a book (in libraries) & a website.

if it's scar tissue :

VIT E + PTX for 6 months to 3 years :)

Sometimes we can have more than 1 thing wrong with us and it sounds to me like the surgeon knows the RC area is sound now. Give your body a good 1.5-3 years for healing. I believe that some surgeons assume the healing process to be faster than it actually is, and this leads the patient to depression when things don't get better as quickly as they want.

Therabands... if these new, easier exercises are still making you worse, stop and tell your PT people. Ask about Feldenkreis PT (do a search on it in this forum to learn more) as an alternative to strengthening exercises. It will keep scar tissue from adheering to things and give you the range of motion that you need.

TOS is a 'syndrome' and possibly this RC surgery made nearby muscles and nerves angry, which now are causing the classic TOS symptoms.

Which fingers are numb? Was/is your pain properly addressed? Are you sleeping ok?

Anne

Diagnosed with TOS but not sure
 

I started with sharp, stabbing pains in my sternum and the ability to pop my ribs from my sternum, then I had my left hand change color (blue veins) and pain in my last two fingers. That was three and a half years ago, and after the problem became so bad--i.e. sharp pains up my neck and palpitations, I went through a battery of testing to see if it was my heart. All tests were negative, except that the occasional arrhythmia was detected, but not enough to even be treated. I found that using a neck and back brace sometimes helps, and that I have TOS on both sides of my body (although worse on my left side) after a vascular test. My heart rate is good, my veins are supposedly perfect, and my blood pressure is low to low normal on both sides of my body.

I'm so frustrated because, after years of being tested for everything from a pulmonary embolism to heart problems, I finally saw a vascular specialist who said it was TOS but that no one in Orlando treats it. Now I'm supposed to go out of network and pay for care and testing several hours from my home. How can this be my only option? Does anyone know of someone who sees patients for TOS in Central Florida? Also, has anyone else had palpitations from TOS? I'm still not sure if that's what I have and I don't know where to go from here.

Oh yes , quite a few have even had to go to ER for heart check- all due to severe spasms of the chest muscles & intercoastals - those muscles go nuts and makes it seem like some sort of heart thing happening.

I had it too, but by then I had read here about the others same experiences & the descriptions- and I knew I was having severe spasms at the time too. So I just monitored myself , just in case it might be heart related...but as soon as the spasms faded the weird chest & heart sensations faded away too.

there was a DC -I think he was based in FL.. he had TOS type sx too.
I don't think he has posted here but did join, I'll try to contact him.
Maybe he would know of someone good in FL.
I checked and looks like he is located out of the country now.


If you can find a really good /expert PT place, or expert chiropractor that does PT type modalities - that will be a good benefit.

Most MDs don't really treat it - unless you need rx'd meds or rx'd PT.

but if you can find the PT place you want to go to then tell the dr that you think it will be a good place, and hope they rx it for you.

home stuff - posture, gentle stretches, trigger point work..
see the sticky threads up above for more