Is anyone out there "cured" of nTOS?
 

Recently diagnosed with "atypical" nTOS after 2 years of symptoms.

I have already tried conventional PT, fascial release (a la Sharon Butler), chiropractor, and massage - all of which caused flares. Now I have been on the Edgelow protocol for a few months with mild improvement.

I understand that this is a lifestyle change, not a 4-week program PT program, but I need to know, is there anyone out there that considers their nTOS "cured" or "managed" and who has successfully returned to work at a near-normal level, say at least 80% time?

If you describe what pain & symptoms you have and what your avg pain level is, it might help give a better base for others with similar to reply.
Many have varying sx & pain levels and different causes..

Are you working still?
My feeling is PT often cannot offset ongoing reinjury/damage...:(
Is your TOS possibly work related?
Any previous RSI injuries or prior whiplash injury?

Do you feel your PT was knowledgeable & advanced?
Or more of a one size fits all/ preset plan? (often does not work)

Anyone "cured" of TOS?
 

I was trying to spare everyone the details:winky:, but:

There is usually mild neck/arm pain 3/10, more of a fullness and tingling in the arm, but at the end of a long day at work, I usually start to get some weakness in my hand. If I work a regular week, my arm will get swollen, moderately painful, weak, and takes 3 days to get back to baseline. No history of whiplash or RSI.

Currently, I am back to working 3 days a week after taking 2 months off, but it has been difficult. I get the feeling that I "flare" myself up at work, and then try to play catch-up on my days off by doing Edgelow PT. TOS is certainly related to and exacerbated by work, but hard to say exactly what "causes" it since doing things around the house can also make the TOS worse.

The conventional PT that I tried was one size fits all and did not work.

The Edgelow PT program is the only thing that has worked so far - the breathing and other parts of the "Core" Program do help calm down the arm and provide relief. I have not yet gotten to the "Progressions," which focus on retraining posture and reshaping the spine and chest, with the ultimate goal of opening the thoracic outlet and decreasing nerve compression.

I am really trying to get some idea of what the range of long-term outcomes is. I.e. financially speaking, if the best that I can expect is a long slow decline in function, then we might have to make different financial decisions than if there is reasonable hope of maintaining a 3 day/week schedule or possibly getting back to normal work. My job has a little computer work, but lots of hand/arm task work, and does get stressful at time.

Any input would be greatly appreciated.

I will say, that for me (and probably many others) working & trying to heal did not work.. but I was doing assembly work speed & repetition & 10 hr days...:eek:
I already had multiple & various RSI dx's - probably all a factor w/ my TOS..
Mine is mild now & more of a myofasical pain syndrome.. but been off work since 04.
If I goof around on computer for many hours or a couple days in a row , like when I need to fix or upgrade my system, I can feel aches in my hands & elbows..
But I can stack hay & do some heavy chores, now my low back has more of an issue for those things..
I did find a really good chiro that was a healer of sorts I guess as he seemed to know what would work, and listened to what I described, and he did other soft tissue modalities too. Ultrasound, IF stim, low level laser Trigger point work...:cool:

I don't like to say it but taking some major steps now if at all possible to repair & heal will be better in the long run..

here are some easy things to try at home many times a day- if they make you worse then stop.. but don't overdo ofr force it, baby steps forward is the key w/ TOS..
http://neurotalk.psychcentral.com/album.php?albumid=422

check out the sticky threads of PT & trigger points..
But if you can locate a really good advanced/expert PT or an awesome chiro that does many things .. that will be a good thing...
Don't tolerate cookie cutter or same old generic stuff PT , run away LOL...:)

I had bad PT and some really good PT but I had to learn a lot myself to be able to tell the difference...but I did have misalignments from an active tomboy childhood and a few horse accidents.. so that chiro really was a plus over most of the PTs.. plus they didn't have the laser.. or the IF stim , and didn't seem to do/know much about trigger points..

Hi there, :Wave-Hello:
Managing TOS is not as much about curing it, as managing it. There is remission. It can calm its ugly head, just waiting to flare.

Learning what escalates symptoms and avoiding those activities or finding a new way to do them.
Working is very difficult, many do with the sedentary work, that which is no more power used than being home.
Finding ways to adapt your working environment, and changing jobs to less repetitive. Even reducing hours is good, or manageable for trying to maintain income.

Workers comp if work related can often be a battle, stressful and eventually ends. Social security can be such a minimal amount of income compared to that which working brings in. Add to the cost of paying for Medicatpre, supplentl coverage, drug plans and the out of pocket expenses is not a picnic.

If you have HR, they can bring in an Occupational Therapist to make your work area more ergonomic, you may need to change jobs, then know how to reduce symptoms when you are off work.
Finding ways to sleep decently, I have a hot tub that use to run endlessly, Biofreeze, daily baby Aspirin in a flare become a reg strength, and a good physiatrist to make your symptoms too.

Freaking problem with TOS is that its one of several things that go together, not the only thing. Many of us have (I am guessing)

1. Whiplash - which means injured muscles & weakened zones wherein the wrong ones are overactive. Ta-da scalenes - ever ready to help out.

2. Bad posture from years of work in specific manners - eg FHP, rounded shoulders, weak back muscles, which mean pec minor syndrome comes along and so does carpal tunnel

3. Accident guys tend to have disc bulges, facet syndrome and stenosis also lurking. Freaking impossible to figure out which of these is working along with good ole TOS to make our lives a living misery.

4. So, I now think to address TOS you have to hit everything. No exceptions.

5. Another issue with TOS (for me), I became immobile, further weakening my core, my lower back muscles adding to the injuries i have.

6. Moral of story remain mobile, keep walking, doing cardio as much as possible. Keep your core strong.

Hi,

Just because others have not been able to "cure" your TOS does not mean that you can't. A lot of the times this disorder comes from gradual changes in your body's mechanics. You need to analyze every aspect of your body from your standing posture to your hip allignment to your scapular position, find abnormalities or weaknesses, and work on them tirelessly. I have had disputed nTOS for 3 years now and every single day I'm looking for ways to help it. I just want you to be positive and know that it is possible. Everybody has bad days with TOS, but with the right mindset you could reduce symptoms A LOT. Mine now feels more like an annoying itch on my shoulder whereas two years ago I could only sleep in 25 minute intervals before I would wake up in pain. Im working full time, getting in the gym, and actually living a fairly normal life.
You got this.

Thats good to know. Any specific exercises or methods that helped?

Sorry Jo, wrong post quote, out of practice..

Look up Evan Osar corrective techniques for shoulder disorders. That guy is really great. Upward rotation shrugs have helped, also face pulls. And psychotically rolling my chest and subclavius on a lacrosse ball. This stuff has got me back to 80% normal, still no heavy weightlifting but I am free to mountain bike, run, box and rock climb and stay at a 1 or 2 out of ten on the pain scale. However I still do get crippling flare ups where I cant even get up out of bed. Id say once every couple months. But im hoping they will become less and less frequent until they are just gone

I should add that mine didnt come about from a traumatic incident. It set on very slowly and insidiously until I was in a lot of pain and unable to sleep. I whined for 2 years before I actually did anything and I regret that very much. I think if I would have attacked it right away I would be completely fixed by now, or at least close

Great question, one that haunts me as well. Couple of points in response:

1/ I haven't yet managed to do this, but am hoping against hope to be there in 3-6 months.

2/ My belief is that thoracic outlet syndrome (like all other repetitive stress injuries) is a manifestation either of bad posture or some fundamental structural defect (the latter are kind of rare, from what I understand). My goal with treatment is to first calm the pain in the short term so that I am good enough to work regularly (am not there yet) and then focus on fixing the overall body mechanics through regular yoga / physical activity / trainer. My belief is that the second phase is difficult but can be achieved with a year or so of disciplined activity. However, the challenge seems to be to get out of the cycle of short term pain enough to be able to pursue the second stage.

3/*edit* is an example of someone who seems to have achieved some form of the above.

Thanks but wouldn't upward rotation shrugs overstrengthen an already dominant upper traps?

I don't know, but keep something general in mind: TOS is not one thing. There are at least three different places where the relevant nerves can become impinged. As I just learned this week, you can also have problems starting right in the spine. So if your problem is mostly in your neck, you may not benefit from following the treatment plan of someone whose problem was mostly in the pec minor, etc.

Did you have a specific book that showed how to do this safely? Or a PT or some other teacher? Or did you just grab a lacrosse ball and run with it? Thanks!

Im pretty sure all TOS is different. But raising my clavicles resting position actually helped quite a bit in terms of symptom management, it definitely didnt magically solve my problem

I just went with it! I dont think there is too much danger in foam rolling/soft tissue work with a ball, as long as you are careful

Got it. Thanks.

Did you have drooping shoulders/downward pointing clavicles to begin with? Or were you ok with upward pointing clavicles and the upward shrugs helped strengthen your overworked Upper Traps?
Very valuable point you have brought up.

The interesting thing is there is a raging fight going on between all sides on whether trigger points exist, whether stretches work and what not. But all the anecdotal evidence I have seen states it does work.

Fair points but I learn a lot from what you guys bring up.
I think we just have to hit pretty much everything since a lot of us have similar dysfunctions mostly due to having some sort of RSI element worsen things.

Yes my clavicle sloped down and my shoulders rolled forward
I went to my teams physical therapist and she pointed out that the bottom and inside edge of my shoulder blade rests in such a way that it sticks out of my back. This implied that my shoulder blades were unstable which is a main cause of "shoulder impingement syndrome" which they are sure is my problem. So the plan was to strengthen the upper traps and serratus and lower traps to stabilize my shoulder blades and stop my shoulder pain. My body responded to the upper trap shrugs extremely well and I improved by about 45% over the course of 6 weeks. I now do a couple sets every couple days to maintain strength but any of my upper trap problems I would consider managed/solved. It was a huge help and I recommend it.

The serratus and lower trap stuff isnt doing its job however. I cant flatten out that shoulder blade. This is probably an issue with my medial scalene putting pressure on my long thoracic nerve. Maybe not though, who knows.

Im positive if I fix my shoulder blade position, whether that be from physio, botox or surgery to free up my LTN, I will be 100% cured.

Im ranting a bit but what im trying to say is that there is a lot of focus on changing the first rib position and adjusting the first rib, when in my opinion, the clavicle/scapula complex is much easier to manipulate with upper trap/serratus/lower trap strengthening

Hi

Can you please describe the shoulder shrugs?
I am back to work but have had several flare ups and have had a miserable week.
I think Ozone shots may have helped me a bit. I can't get out of the pain cycle enough to strengthen, but i do roll on the soft roller and ball quite a bit. i want to try Edgelow-Did you buy a kit? And Where from?

Thanks,
JKL

I did not do edgelow and I dont know what it is sorry. Heres a video though! Hope it helps!

https://m.youtube.com/watch?v=WvFhnUWjMVA

Thanks JZP.
So from your post it appears you had overstretched, weak Upper Traps and probably LT was already strong to begin with. By strengthening the Upper Traps, stress is being taken off the clavicle by the muscles below.
In my case (I think), I am already Upper Trap dominant (a very common phenomenon) so Upward Shrugs should be added only after I manage to make my UT:LT ratio dysfunction less. Otherwise the strong Upper Traps will overpower the LowerTraps again.

Exactly! Thats what a lot of people miss, the whole lower trap/upper trap relationship is about balance, at least thats what I think. So the shrugs definitely wont help everybody!

This is why TOS is so frusterating. It has different ways of manifesting in different people, so my TOS is different from your TOS. I wish there was a magic surgery that solved everyones problems and it was universal for all of us.

Chtam- keep trekking man, there's still options.


Yes yes Yes!
(Loving this thread btw. )
This is part of why surgeries, even conservative treatments etc are not successful if they are not tailored to the specific individual and their specific set of issues. It's very easy for new, or busy, or uninterested medical providers to just follow the flow chart of treatment and then get peeved at you or failing to arrive at the correct conclusion.
There are 3 types of 3 TOS (veinous, arterial, neurogenic) in some combination that typical exist in 3 main points of constriction (interscaelene, costoclavicular, subcoracoid).
http://www.physio-pedia.com/Thoracic_Outlet_Syndrome
This little section of the neck/shoulder/scapula is intensely interconnected and messing up one part tends to really throw off the rest.
For whatever reason, interscalene TOS is the most common form of treatment and typically only around the anterior portion when it comes to injections and surgical release. This makes no friggin sense to me if the nerve pathology is causing a clavicle droop, especially of there is a chronic winged scapula involved!'

Balance balance balance!
Finding the right PT may be the answer, and I'm going to be looking up all these names (thank you!) as the docs argue if the clavicle is a shoulder, neck, or thoracic dr's problem.

I have lived with TOS for over 20 years and still work full time. I am lucky that I have moved into management, because there is no way I could still be an electrician. My arms get worn out just removing the screws to change a light switch cover.

I am having more and more trouble functioning, but still work 50 hrs a week and drive 45 minutes each way. But the way it is going I think at the most I have 4-5 more years of working in me.

My normal pain level is 4-5 and it hits 8-9 regularly. I get PT every 3 weeks, massages as needed and on 2 prescription pain medicines and 1 muscle relaxer.

Can you tell me the frequency and dosage/weights for the Upper Trap shrugs? I just read that many folks think that Upper Traps are basically stabilizers and strengthening them is mostly a plus.

Thanks