So in essence that sounds like a 66% failure rate if you count no change in symptoms "no success." That sounds a little more credible and realistic based on what personal accounts are online.

It seems that some seem to quote that high, but I have sincere doubts. Where are all the success stories? I have a difficult time believing those with "successful" surgeries are 100% symptom free. My guess they have flare ups even still and you'd think they'd visit a forum like this from time to time. Even if the odds were 90% failure, you'd think that 1 out of 10 'miracle' someone, somewhere would know of.

I realize every case is different, but you seem to be a NTOS surgery person with actual experience, whereas most are VTOS or ATOS. Do you know WHY your surgery fared poorly? Scar tissue? Surgeon's fault? Complications? Did you have rib removal and scalenectomy? Was there ever any relief? Did your lung collapse or did you do permanent phrenic nerve damage?

How do you remain positive? Taking opioids every day - chronic pain? God knows there are crazy side affects with all of those pills. I fear getting to a very dark place and questioning wanting to live like that once I got to a certain point. Are you totally out of options? Could they even do a revision surgery if you wanted?

Like I told Dr. Annest in Denver (they do most surgeries at that time) I didn't care if he could only help me 10%, which he did, but mostly he stopped the progression of the injury.

I was injured by over work on the computer, and my pain went from a year of headaches, to a blown up arm and pain of 10. I cried, I wanted death, and I begged pain mgt. docs to please help me with my misery.

it is 8 years now and I'm still learning my way - I am about 90 percent bedridden, sometimes do okay, but then othertimes I need to be fed broth by another person. I have a nurse(s).

I am a very angry advocate of TOSers' rights especially in the area of work, when verbal software is available and could keep us all out of this sickness.

All of my dreams, my looks, my MONEY is gone!!! It is survival and lawsuits, etc.

Don't give up, anyone, and I try to plug in here once in awhile.

These stories are depressing. I don't know how either of you have gone through such a horrible surgery only to wind up worse and still manage to go on.

I admire you for not wanting to end it all. Perhaps I am not as strong as you are but I think if I got to the point where I was bedridden and had no quality of life that I would contemplate very seriously ending my own life. It is horrible to even think along those lines - a few years ago I thought people in chronic pain mostly were self limiting. Now I see the err of my judgement. :-(

I feel like TOS is going to kill me- whether it be slowly or quickly. It is hard waiting for my quality of life to diminish slowly, day by day... And have no control. I stretch and do exercises daily. I have seen nearly 30 doctors and tried almost everything. My pain is only about a 3 - 4 but it has gone from a 1 to a 2 to a 3... It's clearly getting worse despite my efforts which is deflating and saddening.

I can't get disability and there is no one to sue for workers comp. So I'm totally screwed if I cannot work.

I feel angry and bitter and find myself resenting people with poor posture. I think why me and not them? My posture isn't even that bad. And people who seemingly are horribly worse posture wise are symptom free.

I miss my life and have a hard time accepting this is my future. Hard to watch my family slowly distance themselves from me because they sense me being less of myself. I am a newlywed and my wife doesn't deserve to lose her husband or a partner who contributes. Sucks.

Sorry to sound so down but this just feels hopeless. Wish I could read of someone who had a more favorable outcome.

I wish there was -SOME- kind of recovery story. Something. But I can't seem to find anything even remotely close to a success story.

It took me a long time to make peace with my limitations. I used to try to power through and that only made things worse.

Yes, I have NTOS, but also some mild vascular involvement. I had a relatively experienced surgeon in SF. I came out of surgery relatively okay except I had some palsy of the phrenic nerve (I think) which made my diaphram not work properly. It resolved over time.

I had a rib resection and scalenectomy. It was done above my collar bone. I had a very difficult 2 month recovery from surgery. Then I had about 3 weeks with less pain. Then things just kept getting worse. At 8 months post op I had a MRI of my brachial plexus by Scott Werden in SF. He specializes in TOS studies. He found a moderate amount of scar tissue surrounding my brachial plexus. He could tell by the density that it was still forming. My doctor at the time said scar tissue on your brachial plexus equals chronic pain.

I don't really thing of re-doing surgery since I had such a bad experience the first time. Even cleaning up scar tissue is sort of an endless loop of forming new scar tissue. I don't see a reason to go down that road.

I'm not a depressive or suicidal person (thank goodness). I had a very supportive partner, step-children and a 13 year old son. I would be in a very different place emotionally if it were not for my family -- especially my son. I do a lot of things because I want my son to have a normal growing up. If I were alone, I'd give in to the pain more often.

This is a long haul. You'll get better at dealing with the physical and emotional pain of this experience. Don't expect yourself to be an expert in only a few months.

LOL I totally hear you on being jealous of other people's health. "Why can't I be healthy g_dd____t!"

Why don't you consider Jo*mar to be a success story?

Why don't you consider Shelley to be a success story? Note that she doesn't post much here since getting her TOS under control.

JennyHurts also got hers under control, but also doesn't post much any more since then.

I've said it before and I'll say it again: People who get their health back just don't hang out here.

Jo*mar is one of the exceptions.

There have been some in the past - way back- that came back and posted that they were doing better after surgery.
Some had the extra c rib, some had vascular & a few were due to acute injury if I recall correctly.

Often there was just a few posts and updates, then I'm sure they got busy with job & things.

A few did return after some time, one or 2 had a bad fall or car accident that set them back in to pain mode again.

I think some might have felt bad or maybe guilty ??... that they had a good outcome and others posting were still in pain .. , maybe they just didn't know what to say after awhile...


I think at some point we all accept that we have some dumb condition and eventually make peace with the new "us", then a lot of the added stressing about the what if's, why me & such fades away.

I have bilat. NTOS (confirmed by NCV) and on a scale from 1 to 10, I would say that I am on a constant 6-7.

I don't think there's anything I am not able to do, however there are certain things which provokes my condition, for example heavy lifting and computer use.
At the moment I don't have any muscle wasting or atrophy, but it is becoming a real concern, as my fasciculations and nerve twitchings become worse.
My pain is in my forearms and in my hands, which sometimes feels like they are on fire.

I'm on 600 mg of Lyrica daily, which unfortunately doesn't have any effect. I can feel a depression coming, and I expect a medication switch to Cymbalta.

Try to stay positive

Interesting you had yours confirmed via NCV. I have had two tests which showed as "normal" - how long have you had symptoms. How long before they showed up on the NCV? Did you previously show as normal on older tests?

I can relate 100% to the pain you describe. Forearms cramping. Burning sensation. It sucks. I have heard Lyrica doesn't touch the pain, I wonder if Cymbalta will.

Question - are the twitches and fasciculations signs of atrophy or muscle wasting? I have those too. Thumb twitches especially. I still have the same strength however, near as I can tell.

Do you still work MarcS?

Sorry to sound like such a downer here. I'm just under an amazing amount of pressure. I am a newlywed, have a mortgage, a job -- my wife depends on me to provide income and help around the house. I just can't resign myself to this. Perhaps it's just denial.

MarcS, could they tell where the nerve was damaged or impinged?
Like a double or triple crush at the elbow or carpal tunnel, or somewhere else?

I've had light symptoms for about 2 years, then this last year symptoms increased, why i dont know but for 2 years my condition was treated as CTS or RTS.

A few months prior to the positive NCV, a negative NCV came back - i think the neurologist's experience and expertise reallly plays a role when it comes to EMG's and NCV's. I was told that he was one of the bests in the country - if that is true or not, i don't know, but he used to train students in the use of the NCV software and more.

The guy who made the positive NCV was much more thorough, placing the electrodes on my neck, armpit and collarbone area, he used special rulers to measure the length of the nerve and after the whole deal was over, he said he needed some time to do some number crunching.

Yea, the burning really sucks - i hope the Cymbalta will take the edge off. Regarding the fasciculations, you should check out the video i made of my hand: http://www.youtube.com/watch?v=2T47I...EB1B03CB6D5FAD

As far as i know, fasciculations are usually a sign of nerve irritation, whether they then lead to atrophy i dont know. I also have normal or close to, strentgh in my hands. Next month i have an app. with a neurologist who hopefully is able to answer some questions.

I still work, work at a kindergarden 22 hours a week. Glad to still have a job, however it is quite draining to be in constant pain.

Even though i don't have a mortgage or anything (im only 21) i can still relate to your thoughts, it is important to keep your hopes up. I once saw a study on kids with cancer - the chance that they beat the sickness was much higher when they had regular visits by a hospital clown. I guess you psyche plays a big role in your physical healing.

I've chosen to upload my NCV here, some of it is in danish, however i will try to translate.

@JoMar --> The tests show that there's no impingement in my hands or elbows. Tinell's test was also negative and has always been.

If you have anymore questions, feel free to ask.

My NCV:
http://imageshack.us/g/259/dsc3512g.jpg/