I've been reading these posts for several weeks now; I keep thinking that I should stop because it makes me crazy, but by now I've come to accept that I have TOS even though I haven't been actually diagnosed. I spent several weeks on an old pair of crutches (still haven't read anything about crutches causing it) on the thinking that I wouldn't need them for too long. Several weeks later the symptoms started in my hands (I'm a musician, so I'm particularly sensitive to that) and have now spread into my chest, primarily. I've come to accept that I may never play again, but I can see that the possible prognosis is actually far worse. I live in NYC, single and alone. My parents (my only real support network) are in CA, and all I can think about is the shame of moving back there if this disables me. I'm also feeling amazingly stupid for having caused this to my own body, and I have no idea how I can live with that starting at the age of 36. Where will the rest of my life go?

I could use a bit of help. Sure, I have medical questions but it's more how you all have survived this and lived your life. I'm just not sure I'm strong enough to do that sometimes...

Hi and glad you found us, the door is always open and light left on for our new friends.
I can really sympathise with your age and limits, but you can make a heck of a life by adapting and not over doing.

Links and more links....All types of information.

I wanted to say hello, and welcome.

there is a search this forum option at the top of the page and whatever topic you are looking for can give a good real people feedback.
di

Hi J,

Don't freak out , catching TOS or chronic RSI stuff as soon as possible is a good thing.

What kind of instrument do you play?

Anything with arms forward & head forward { most instruments}, reps & long hours of practice can really impact the body/posture relationship.

Any previous injuries? whiplash, hyper mobile? these factors add up too.
The crutches use adds to it too.

If you've been reading for awhile I guess I don't need to repeat my usual newbie replies LOL

ask away with whatever questions you have.

You can turn it around if it is myofascial based - but it's isn't a easy fix - takes time and rest & proper rehab and self care & posture awareness.

Do you make your living as a musician?

I did assembly work so had to eventually step away from job when I finally realized I needed time away to get maximum healing.

What is your avg daily pain level now? {0 =none up to 10 = highest}
What are you most bothersome symptoms at this point?


for me -
self care- body work/posture, far infra red heating pad, trigger point self care as needed, Sharon Butler stretches & reverse posture stretches - only once in awhile now - back at the beginning of my injury many x's a day was my focus.

a really good chiropractor- does upper cervical & PT modalities too - ultra sound, IF stim, LLLT, NIMMO { had some misalignments from many many yrs ago}

A couple of advanced PT people were very helpful.

I haven't gone back to work, but I suppose I could if I carefully choose an appropriate job for myself.
But I can pretty much do all activities without too much problem.
It did take a couple of years to get to this point, and at first I didn't know anything about TOS until I found these websites.
Learned much along the way, but the most important thing is to learn about it early on and work to reverse the damage before it becomes a major & permanent problem.

Some pressed thru the pain /symptoms & tried to keep working - not knowing it could become something like TOS and so permanent.

My hope is to get the info out that by learning about TOS early on and working to reverse it before yrs go by {while waiting for a dx from Dr} most can avoid the worst of the problems.

I can see that you really keep up with this group and very thankful for the time you've put in - I've read a good portion of your posts. I will respond below in the hopes that some of my replies will perk up some useful responses from others. Then I'll ask more questions at the bottom and, if you feel they've been answered before and I haven't found them, you can direct me to the proper place at your leisure. THANKS!!!!


Don't freak out , catching TOS or chronic RSI stuff as soon as possible is a good thing.


Is two months from the onset of symptoms (first in the little finger) catching it early? I suppose in comparison to years, it is...

What kind of instrument do you play?
Anything with arms forward & head forward { most instruments}, reps & long hours of practice can really impact the body/posture relationship.


I play viola and piano, and this is mostly on the left side (though also on the right). It seems fairly straightforward from that standpoint: Neck forward, arm elevated, laptop use on the subway, heavy backpack use = bad!

I don't practice long hours, but I was doing a lot while on the crutches, which was really the thing that set if off.

Any previous injuries? whiplash, hyper mobile? these factors add up too.
The crutches use adds to it too.


Save a fall while on crutches (onto my back, no big deal), no previous injury. I think it's RSI over a long period...set off by less than ideal crutch use.

You can turn it around if it is myofascial based - but it's isn't a easy fix - takes time and rest & proper rehab and self care & posture awareness.


Ok, I had some questions about that, but please see them below. But, how can I tell if it's myofascial based? What exactly is the distinction between that and something else? Do you mean neurogenic in nature, primarily?


Do you make your living as a musician?


Part of it. I am exploring ways to make life work without it, and have some amount of financial security in order to make that happen in the short-term. Actually, there are other things I want to accomplish anyway, so in that sense taking 1-2 years off is not the end of the world for me.

What is your avg daily pain level now? {0 =none up to 10 = highest}
What are you most bothersome symptoms at this point?


It's nice of you to ask, and I could use some guidance there actually...

Mostly it's the ulnar distribution of the left hand - numb for 3 months, some pain into the 4th digit and (with activity) the whole hand. Tight chest, really tight neck and itchy shoulders. With any sporty activity (even not using hands), burning of arms into chest. Average pain 2-4, with too much activity 5-6.

for me -
self care- body work/posture, far infra red heating pad, trigger point self care as needed, Sharon Butler stretches & reverse posture stretches - only once in awhile now - back at the beginning of my injury many x's a day was my focus.

a really good chiropractor- does upper cervical & PT modalities too - ultra sound, IF stim, LLLT, NIMMO { had some misalignments from many many yrs ago}

A couple of advanced PT people were very helpful.

but the most important thing is to learn about it early on and work to reverse the damage before it becomes a major & permanent problem.


1) What are the Sharon Butler stretches (I assume they are mostly to stretch chest and neck, like my PT is already giving me). Are there stretches to avoid?
2) How did you learn the trigger points? Is there a post on them?
3) FAR Heating pad? Again, if there's info I'd like to know. What's FAR?
Also, what's IM Sim, LLLT, NIMMO??
4) You would go to a Chiro before a PT? The chiro I had also was focusing on the pec minors, but I think the seriousness of my condition scared her off - she isn't returning my calls. Some warn against them...
5) What do you mean by advanced PT? There's someone in NY who has trained with Edgelow, and I thinking of going to them (though my current PT - it's been 2 weeks - does good trigger point and neurofascial work and I feel much looser after a session). I called Edgelow to get their info, he was really nice!

MORE GENERAL POINTS AND QUESTIONS

No matter what, I AM educated now, many thanks to you and this site! I'm glad I found it as soon as the hand doc suggested TOS (and thankfully, he did so before I went through the classic shuffle...which I'm actually still going through).

My principal question is in regards to EMG's. Mine is not totally normal (first one was, but it wasn't done by a neurologist, second one did not specifically LOOK for TOS and the neuro wasn't convinced it was, hence no official diagnosis). Though it might cost me this time, I have considered a third one since I DO have some sensory loss along the ulnar and some "reduced recruitment patterns" in the inner hand muscles. How can I find the right person on the East Coast and is it worth it? Is this an accurate way to monitor progress (or lack thereof?). If I am losing use of my arm slowly, I think that might be a good reason for surgery, especially if I ever hope to play again. On the other hand, I FOR SURE would like to avoid the operation.

FYI: I've also had an MR angiogram (ordered by a doc I found on the ATOSA site in my network) that was normal. I'm assuming that doesn't rule out neurogenic TOS, and he confirmed that.

That's enough for now. I'm incredibly grateful for the response (admins feel free of course to bump the post if needed, as long as I can find the replies) and thank you in advance to anyone who has ideas for me. Hugs to all!

Joshua

Just Jo is fine I just added the *mar as an add on thing


Much of the info on most questions are in post #1 of the useful sticky threads - Trigger point links, chiro info, Sharon Butler info/link {she has an RSI & TOS info site}, links to videos that help to explain a lot , another post has testing info and many other contributions from others.

http://neurotalk.psychcentral.com/thread84.html


gotta run - back later with more.

I went to PT places first actually but it was a work comp injury & my doc Rx'd the PT.

Long story but due to claim & denial and a few other changes I went to about 5 diff places, each was better than the one before.
But if I was referred to a good DC early on I might have avoided some of the ongoing issues or just plain got beyond the almost healed stage sooner.
Chiropractors -I know there are good ones and poor ones , luckily I happened upon a good one. Been going since mid 04 & no problems to report only feeling better stuff.

The adv PT were the ones that actually did the in depth positional /pulse testing for me - to rule out if sx were from c spine or TOS, none of my MDs did the full group of those tests - DC did.
this page has good info on those positions - http://www.nismat.org/ptcor/thoracic_outlet/

due to sports, falls & roughhousing tomboy stunts as a kid and a minor car accident in my 20s I had some long time minor misalignments - they played a part - plus age - my mid 40's then, and being hyper mobile.
All these things add up along with rep work or static upper body postures.
IMO - the longer misalignments go without being addressed the longer it will take to resolve them.

Trigger point sticky thread- I'm slowly adding to it - there are more posts scattered thru the forum.
http://neurotalk.psychcentral.com/thread125577.html

for a firm diagnosis many other things need to be ruled out - there isn't a test that will prove you have TOS.

basically x rays/ MRI of C & T spine to be sure nothing as a cause there.

EMG & NCV will show if there is a actual compression on the ulnar or radial nerve but it doesn't test the sensory nerves

Long story but due to claim & denial and a few other changes I went to about 5 diff places, each was better than the one before.But if I was referred to a good DC early on I might have avoided some of the ongoing issues or just plain got beyond the almost healed stage sooner.


And how did you determine the next one was better?

Chiropractors -I know there are good ones and poor ones , luckily I happened upon a good one. Been going since mid 04 & no problems to report only feeling better stuff.


I guess I'd have the same question here...

Trigger point sticky thread- I'm slowly adding to it - there are more posts scattered thru the forum.


Ok, but I still couldn't find the butler stretches, only a ref to them. Help?

basically x rays/ MRI of C & T spine to be sure nothing as a cause there.


I have not had either one for the thoracic spine. What would that show that I don't already know (I assume some kind of spinal compression, right?). I've had both of the cervical spine already, nothing more than c5-c6 slight bulge and some arthritis.

Again, I should thank all the info here for my being able to guide providers through my own care (they all say I don't have TOS but offer no other explanation...but I'm sure you've all heard that story before)

EMG & NCV will show if there is a actual compression on the ulnar or radial nerve but it doesn't test the sensory nerves

I'm a little confused there. If the compression is measured in the sensory aspect (which it is) does that confirm neuro TOS to some extent or mean that I don't have it? I know there is also some lack of hand muscle response. Brantigan (in his 2004 article) says that is a sign of advanced stages, but I don't know enough to say. Any thoughts?

THANKS A MILLION!!!!

The first place I ended up with a rookie PT - still looking in his books to figure out stuff got out of there fast.

I did have a bad RSI in 99 & some shoulder injuries in 02 & 03 so had some experiences with PTs already- then when the final big injury came about {all the others accumulated IMO}
I did a ton of Google-ing & reading about all kinds of RSIs and that eventually led me to finding info about TOS.

Sharon Butler has a website with some good info but to really understand her theory about sticky fascia - you need to read her RSI book - it took me more than one reading to get it to soak in {in libraries} or get her TOS program { http://www.selfcare4rsi.com/

Her program is copyrighted so can't be posted online.

I see she added more things to her program since I got mine 6 yrs ago..and it costs more but there is a 60 day try it and a 20.00 off.

but getting the book from the library would be a good start and to see if it will work for you - in the book it covers all RSI problems so you would have to figure out which ones work for you or not while her TOS program is laid out for you step by step - I started with the book and then decide to go with the program.

Her main thing is to do very gentle stretches and totally listen to what your body is telling you - over doing is what got us here so we need to slow down and be aware.
you stretch until only the smallest tension is felt - you don't ever force a stretch only baby it along step by step and soon you notice the tension is going and then another small step forward.
Plenty of rest & recuperation time is important - relax, breath de stress
stress = tension
keep hydrated - clear fluids == flushes out the toxins

If you use the forum search for her name lots of older posts will come up.

Some of the PT type stretches they tend to rush you thru them and want you to push it .. there a more general - cookie cutter regimen

You should be fine on the MRI - mainly it's to verify no cervical ribs & large bony structures/anomalies and to be sure no disk /spinal problems that could be a cause.

I've only had one emg/ncv test and all showed fine test wise. But I still had pain in the back of my hands , forearms and up into the neck & upper back muscles.
So I'm not an expert on that part of it - just going by what I read from others over the years.

for more details & info you can search the forum for NCV or EMG.