I think my surgery did not work because of scar tissue. There was about a three week period where I started to feel a little better following surgery (after a horrendous 2 month recovery) and then the window just closed. I had an MRI of my brachial plexus 8 months after surgery to see why I was still having so many problems. The MRI showed moderate scarring on my brachial plexus and it was still in the process of forming. Scott Werden in SF did my MRI and he's done hundreds for people with TOS.

So maybe I was simply unlucky. I had PT immediately following surgery and I was a motivated patient. My nerve symptoms have gotten progressively worse and my headaches and migraines are worse, too. I can't really explain it.

I do know that when I first started reading the TOS forum on Braintalk in 2003, I thought a lot of the "lifers" were just whiners. I'm ashamed to admit it now, but I did think they were overly identified with their conditions. But it's 8 years later and I'm still here.

Don't give up hope. If you're able to manage your pain with some adjustments at work and some changes in behavior that's great. I have way too much pain, take way too much pain medication for my comfort and it's still poorly managed. But I still have a good life with a great family. But it's a really different life from the one I had before.

One thing I've learned from this is that I'm not in control. This is the new normal. I need to adjust and make peace with it because it's not going away just because I want it to.

You'll figure this out. Try not to get too far ahead of yourself -- which I know can be really hard. Hang in there.

Thanks everyone for the input, honesty, and candor. It helps to have a dose of reality along with some honest feedback. The last few months since April have been quite challenging. I have honestly not cried so much since I was a kid. I am not even one year into a marriage and my poor wife has had to see her husband go from a man with a promising career to a person who is uncertain of whether or not I can even work tomorrow. It's been hard on me physically, emotionally, and mentally.

I have been through hell to even arrive at a diagnosis and I have had weeks where "experts" led me to believe I have had MS, ALS, And the latest CIPD. Its been a roller coaster where at times I feel cursed and lucky to have ToS. Not the first year of marriage you see on tv or movies.

I feel 98% confident I have TOS with anterior scalene involvement and perhaps even slight pec minor involvement. I have exhausted my traditional means of PT and have seen 3 neurologists, a vascular surgeon, 2 chiropractors, and loads of other experts.

I have been suffering with this progressively for about 6 mos. and I am not seeing much progress. Not sure what to really do next, where to turn or what to try next. I know I am sitting on a ticking time bomb though which horrifies me.


• I don't have disability as I am self employed. So it's all or none and either I work or bring in zero income.

• surgeon I saw seems to think being an active and fit male my chances are greater for successful surgery but seems like load of crap. Especially if I go back to existing career which would likely create scar tissue.

• There is an egoscue clinic near me, have considered an evaluation. But it is not cheap. 2K for 8 sessions which I am not sure is money well spent.

• have reduced my hours to bare minimum with little change or effect.

Not sure if I gamble on surgery, take my chances on more conservative treatment, wait it out another 6 mos ?? Quit my job and go work at Starbucks? Become homeless ?? This is a tough call for me...

In a matter of months I went from being an active fit person with a lucrative computer business to someone who wonders how they will make the mortgage. I know many have it similar or worse. Just so sad and unfair for all of us.

I find myself looking at people with horrible posture and resenting them because I have TOS and they seemingly don't. Not a good emotional space.

For the moment when you are diagnosed with TOS you know you are ******, but at least you have something to accept.

So accept it and go on. Try anything. If nothing work you have something to accept. It's very clear.

You are now a toser.

It's hard at first but accepting it is a key.

KEEP STRONG!!!!!!! 343v343,
Neurological symptoms can and do subside. Remember that surgery is LAST resort. You can get through this.
Life changes are key however. Gently stretch those b******d muscles. You can get release. You have to make sure that you incorporate a relaxation/stretch routine into your day to focus on your trouble area. And most importantly to keep it going even if you feel ok.
If I stop stretching they very quickly tighten up or go into a spasms. POSTURE...... Yeah, I hear yah. Why is it that some people are totally hunched over but painfree??????
TOS is your own personal battle, its how you tackle it that makes the difference. Be considerate to yourself and you can get the better of it! If you stop nurturing yourself- Stretches/ meditation/ Belly Breathing/ self massage etc... Whatever works for you, then yes TOS will take over.
Look after yourself first before others....if you don't than you will be no good to them anyway!

POSITIVE. You CAN do it!!!!! We ALL can.

I apologise if this offends but can I just say that I absolutely HATE that term "toser" being used out there!
It's so defeatist!!!!!!!!
TOS is debilitating, it's horrid but it won't beat us if we work with our bodies to counteract it.
Just listen to your body and work with it!
I know that at the end of the day that we all try to remain light-hearted but its no joke. And I truely believe that we can occassionally better this condition by staying focused and positive.
There is no place for negativity with TOS, otherwise it will take hold.
We are not "******".
This forum is to help pass on facts and ways to get through or at least learn to live with TOS------ Lets be POSITIVE.

Many people here have gotten a substantial reduction in the severity of their symptoms by doing conservative therapy, both self and from pros, on a regular basis. Like SD38 has said, you need to do the stretches, posture fixes, meditation, etc. and regularly.

For Egoscue you can work from the books. You can get their kit for < $400 and use it for years. I did this and it helped with my shoulder and pec minor pain, although by itself it was not enough (but no one thing is).

Also, try corpse pose. Then add brugger relief. Then add sternal positional swiss ball stretch.

You have to keep trying things out like boytos said. I just ordered the well-reviewed iPosture to see how often I'm slumping when engrossed with my work.

I also have upper cervical problems (http://www.upcspine.com/self.htm) for which I'm getting chiro care for.

You get the idea. Good luck!

Interesting link Chroma.
I have C3-C4 facet joint sclerosis but so many of the symptoms shown on C0-C1 page???? Probably because of their closeness to the region? Thanks for putting it up.

Call it toser or not, once you get it you are... different. I don't consider myself as a normal citizen. So i don't compare myself with normal people, which is positive. You must accept it is debilitating and horrid, because of course it is.

1) accepting things
2) build resillience
3) Positive

I'm ****** but i'm ok and i search while being positive.

You don't like the word toser, because being ill is not good-viewed by our society, but it is better to be a toser than to be a normal person who can't use arms.

It's not a shame, anyone who got tos will get so ******, even the president.

What kind of computer work do you do?
What about Voice recognition programs - like dragon naturally speaking??

I've even read of programmers that have figured out ways to use it for 90% of their work.

Or maybe hire a college kid to do some of the actual keyboarding??

Think outside of the box, to find work arounds...ways to make is easier for you and allow more time for healing.


One thing I do suggest , is live as frugally as possible, avoid all unnecessary expenditures.
It just helps take some of the pressure off when your monthly pay out is lower.

Thanks to all for the input, encouragement, and advice. I am certainly not going to roll over and die or accept my situation lying down. I guess I am just faced with some very difficult decisions about what to do next. I have been stretching religiously but cannot notice much in the way of improvement. I am not sure if I'm stretching too much, too little, or too vigorously. Or perhaps not vigorously enough? I've been trying to get a decent, gentle stretch for about 10 to 15 seconds.

The stories of people not being able to hold a fork or cut their meat or shake hands is horribly scary. That almost sounds like it would be easier to simply amputate my arms as crazy as that sounds. That just seems like poor quality of life and I find it difficult not to become depressed with such a prognosis. I in no way want to embark on surgery so the challenge for the next several years is to find a way to manage my symptoms. I am fortunate that I work out of the house so I am free to make my own schedule and my own hours. Heck, I would stretch and do exercises most of the day if I thought it would do any good. I think my challenge now is just that I look at my computer and worry that even simply using it or touching it will only add to my issues. I am not motivated to work and in fact am even fearful as weird as that might sound. I play tricks with my mind and ask myself… If I just quit tomorrow, would I get better? Or if I continue to do this will I put myself in life altering debilitating pain? It almost feels like a drug addict flirting with a substance knowing what the eventual outcome will be.

I went to a massage therapist yesterday who is very familiar with trigger points. I know that JoMar mentioned that stretching may do little good if there were still active trigger points present. It was a very interesting experience to say the least because it would seem that I have ascending muscle issues as far down as my mid back and definite muscle imbalance which is evidenced by worse symptoms on one side. I also have pretty bad TMJ on the side that is affected the most. I did have one or two trigger points, but they were in my mid to lower back, so I guess I am good on doing more stretching and hopefully it is a little more effective. The massage therapist also suggested that I try yoga to help with opening up my rounded shoulders and improving posture. I'm wondering if any of you out there have tried this or if it is something that is to be avoided with TOS.

It seems by the consensus of feedback that some of you are optimistic and some of you are pessimistic and I imagine that some of that is dictated by the severity of individual symptoms. If I ever get to the place where I cannot even write on a piece of paper, I fear that day and wonder what sort of mental state I would be in. I have been using the Dragon dictation and find it to be helpful for e-mails and correspondence. In fact, I'm even using it to write this. Or should I say speak this. However, my main form of work is very mouse intensive as I am a graphic designer. I do my best to hire people were possible to take some of the workload off my plate. Unfortunately, there still a large element of hands on labor that is required.

I think my challenge thus far is finding stretches and exercises that target my particular issues. Thus far I have had a real challenge in localizing that.

A few questions for those who have suffered with this for a long time:

Number one: what sort of physical activity do you do for general fitness? I would imagine that some would say lift no weight or avoid any sort of strengthening exercise. While others seem to suggest that it is the only way to help cure muscle imbalance and posture.

Number two: for those that have ongoing issues but are still able to work, can you talk a little bit about what a typical day is like or how you've had to adjust your situation? It seems a vast majority of you are either disabled or do not work which I imagine helps not to aggravate symptoms further.

• How many of you still work?
• How many of you still drive?
• How many of you have functional use of your arms or hands?

Are your symptoms a constant? Do they come and go? I don't want to get on hard-core pain medications either, that seems like a slippery slope.

I apologize if I sound like a complainer or somebody who is bitter but this is all still pretty new to me. I know life is not fair and I realize people have it far worse. Just difficult to come to terms with the challenge ahead and the unanswered questions of what that means for my career, being able to maintain quality of life, and not losing everything I've worked so hard to get. For what it's worth, it is important and helpful to have people to think out loud with and I appreciate everyone's input.