What I've learned
 

A foam roller is my friend. It helps me relax. It opens up my chest. It allows my shoulders to drape back.

My body tells me what it wants. If I listen, it is responsive. If I ignore it, it will remind me who is boss.

Posture IS important.

A good PT is worth more than his/her weight in gold. That said, if one doesn't listen to his/her advise and work with him/her on a team effort, he/she is wasted. It's easier to complain that one has a bad PT than to do the work required.

Some pain can be useful and informative. I view it as a teacher of sorts. Silence it and you may miss the lesson. Work with it and it may pay off with benefits.

Exercise is not the enemy. Aerobic exercise can help with circulation and provides nutrients to starved muscles. Strengthening certain muscles helps to correct imbalances that cause compression.

Sometimes something far away from the BP can be a contributing factor to the neuropathy

How much pain is too much?

Some pain can be useful and informative. I view it as a teacher of sorts. Silence it and you may miss the lesson. Work with it and it may pay off with benefits.

It is hard to quantify "pain." What is too much for me may not be too much for you and vice versa. The important thing is that it is trying to TEACH you something. It is not just there to annoy you. If it screams at you and you can't hear the lesson through the screaming, well then that's that. I've taken ALL degrees and tried to catch the lesson. Sometimes I'm successful, and sometimes I'm not.

Another.....

Patience is a virtue. Remedies are not overnight.

Perseverence is a virtue. Some things require that we continue even if we do not see/feel results/better.

Sometimes what feels better may not necessarily be doing you good. If in the long run it does, so much the better.

No one is saying to strive for pain.
I said "Some" pain. It is something that happens whether we want it or not (no one really wants it). So when in pain I believe there is a lesson to be learned.
PT will inevitably involve some pain...it is a signal that oops went too far...or oops that movement/position is not okay. That said, the signal OF pain tells both the practitioner and the patient something of value.
Obviously one doesn't want to damage the nerve at all or further.
I disagree with strengthening. I have accomplished a lot of decompression because I strengthened certain weak muscles. In so doing, I did not create pain that did not already exist. Those muscles are now strong enough to HOLD my upper body such that it will not compress the nerve (more work is required to get complete relief as there is still some compression from time to time). Of course this is MY situation but it could apply to many others. I too have spoken with my PT and doctor about the pros and cons of pain and strengthening.

My one thought on the pain during PT. I had been diagnosed years ago with TOS. I have had successful surgery but started a relapse last year. My local neuorolgist referred me to a Physical therapist "supposedly" trained in TOS therapy. By my second visit, she "decided" that it was not TOS but a disc problem and began treating me for that. After the second session I qut going. First thing, I SHOULD NOT have listened to her. She screwed me up greatly and my doc was shocked that this woman took it upon herself to "diagnose" me.

I believe most of us want to believe what we are told when someone tells us that what they are doing is going to make you better and that the pain is ok. It will go away after awhile. In my case that was not what happened. When I told Dr. Togut about this he was upset. I was told to do NO therapy. This has been frustrating to me for the past year but, my pain is actually better than before. I want to exercise but am afraid. I have not gained weight, actually have gone from 145lbs to 120. Just can't tone because of fear of pain.

I know alittle pain, as in muscle pain, is ok, but not nerve pain.

As you said, EVERYONE is different and we all need to know our own bodies and know what we can handle. I really want to exercise. I need an appointment with Dr. T. to see what he says.

I hope everyone listens to their own bodies and doctors and does the best to feel better!! Linda

Humorme,

I tried to see your own TOS story, but did not find one.

Not to put you on the spot, but I would like to know IF and how you got TOS, how long it took to get a diagnosis, if you've had surgery(s), and how you're doing today. BUT, only if you are up to it, and feeling ok about sharing. IF not, that's ok, this isn't the "force you to tell your story" post...

I think with clarification that we actually are agreeing on the same points.

And YES, a good PT, and keeping up with your PT to the very best of your efforts I highly agree and believe is one's best bet for recovery.

I hope you'll continue to participate in the Board, I like your ideas on the foam roller. When we had TOS meetings at my house in OC, we would share this and other specific PT ideas and methods.

Welcome Humorme!

Interesting thoughts and ideas! I agree that pain is your bodies way of telling you something. My situation, being an athlete with venous TOS, is quite different from some of the others here. And we all have our own stories and we would love to hear yours. Some of the folks around are bedridden in constant pain, my biggest physical complaint (besides a swollen arm that I'm just going to have to live with, I guess) currently is an unbearable cold hand when I do my outdoor winter sports, like snowboarding... So I've got it good!

I agree that patience is a virtue! I wish I had more. Perserverance is a virtue as well, and thankfully I've got that. I have stuck with a PT program and program set up by a very experienced athletic trainer, even though there have been days in which its the last thing I want to do.

Excersice is not only healthy, but essential. However, too much excersice (perhaps being overly muscular in the upper chest and shoulders) is what may have given me TOS to begin with. My trainer has me working out a whole lot less (less time/less intensity) then I was before diagnosed with TOS. I miss the 'good old days' where I was in phenomenal shape and could do anything, but for my body shape and type it is risky and I need to be careful now not to aggravate anything. I have had some personal victories and some pitfalls. Celebrations of what I still can do, frustrations over my failures and mourning of what I no longer can do as well.

I was lucky and found a great PT. My PT was really only to regain strength after surgery. And my PT sessions were pretty aggressive compared to the average TOS patient and left me sore sometimes, but never in pain. As a matter of fact, my first few sessions of PT were just massage to relieve pain and to work on my scar. I was in so much pain the first time I walked into his office that I could hardly move, after the first session I felt the best I had felt in a month and a half since the surgery and I was so happy! Soon thereafter the hard, frustrating and tedious work began. I had to start slow and build up to where I should be.

I am so lucky to have not had to take many pain killers since the week and a half after my surgery, because for me it would mask to problem, but again my symptoms are not even as severe as the others around here.

You have found a great group of people around here who are very supportive. I have found them all to be so helpful and have learned so much!

There are videos with the foam roller use and other therapies in our useful sticky thread.

I'll post it here for those that are interested in seeing how to do it.

video link of Foam Therapy Roll = use & techniques-
the final part is what the adv PT suggested for me to do opens chest/pecs and drops shoulders
http://www.youtube.com/watch?v=4pQkgyYeV30

other therapy videos- explore
http://www.youtube.com/watch?v=vAjIH...elated&search=

I need to start doing these again - I've gotten off my schedule of doing the "maintenance" stuff, and with the cold and snowy weather we've been having I am really feeling the effects of this neglect.

Another snow flurry with nickel size flakes just starting now,
I posted a snowy yard picture from yesterday morning up in the Photo Gallery-
http://neurotalk.psychcentral.com/ph...ndex.php?n=118

Thanks Jo! The foam roll looks like a great idea to open up the thoracic outlet area. An idea that I had never thought of before. Gonna have to give it a try.

Also, I like to photo of the snow. Looks a little like my neck of the woods!