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/

Will be curious how the other anti depressant side effects manifest (or hopefully don't). I believe the Cymbalata is typically for Diabetic Neuropathy. But there are also typical side affects with SSRI's like sexual side effects, weight gain, and *oddly enough -- muscle pain, spasms, and tremors. Did you have any weird ones with Lyrica?

Really interesting about the NCV finding issues. I wish my neuro would have zapped me in more places besides neck and arms. *Not that I would have any really any more of a strategy.

What sort of conservative care are you doing for stretches / muscles, etc. Have you ruled out vascular involvement? How did you get TOS?

Hi MarcS,
I think you're right about psyche playing a BIG role. Seeing children in need and the courage that they show really does make you step back and assess your own outlook on things.
When you are low you focus more on the pain and that in turn seems to intensify it!
I'm trying sooooooo hard to break this vicious cycle. I've been hit really hard by anxiety/depression and I now know that its now or never!!!!!!!
I had my 1st visit with a therapist today to undertake CBT. I'm forcing myself to try new things. I'm also going to attempt Tai Chi and join social groups. OK I know its not like the rush of being at the gym ( which I miss desperately ) but thats about my limit at the moment and the quicker I get my head used to the fact than the quicker I can accept this life of limitations. I am sad that I can't do all that I used to but I'm here, I have a beautiful family who support me..... I owe it to them to at least try my best.
Yes its difficult to smile when you are hurting so surround yourself with joyous things...... It's all so easy to withdraw yourself from life and focus on the negatives. I do it myself ( too much )!!!!!
You have to teach yourself to live again.... but this time more gently! I want to make the most of my life, however different it may now be.
Best wishes to you all
SD38

Well put SD38. How is your healing coming. When (hopefully never, but) will you know the resulting scar tissue damage on your nerves on the operated side? How long does it take for the complications to come, if at all? I assume being in the UK, your surgery was "free" ? Is your therapy as well? I guess there's good and bad with the NHS.

Hi 343v343,
damn I've just spent about 15 minutes typing a nice long post to you and for some reason it wouldn't submit....ahhhhhhhh

I'll make this brief. In short.....well if thats possible for me.
The healing, its still healing!
I sense that scar tissue damage is potentially very easy to get after this sort of TOS surgery. I definitely know when to take things slow. The risk is high and I think it wouldn't take long before complications occur through over exertion. If you dont rest sufficiently than evidence is immediate, basically signals are there if I do too much too quick and your body definitely tells you what you can and can't do.....and what you can't do is rush. I still get numb hands occassionally at night and ache with little exertion. I've also gained a new symptom post op, Pulsatile tinnitus- from which I've received no help for regardless of my mentioning it. So come Friday I'm back to my Gps to ask for yet more help, and to experience their ' I'm bored with you now look'. Yes UK NHS is free ( thats about it ), its pretty much CUT AND RUN. After care is non existant and its up to you to get therapy ( again free but basic). Nothing is offered after an op and PT or advice is literally given in 1 minute while you are still drugged up in the hospital... its a joke. My experience was an eye opener. You are very much on your own..... the attitude is like, well we've done our bit - move on.
No compassion.
Is it different in the states? Because its done through insurance and stuff is it more personal with follow ups that actually assess and monitor your post op outcome?
Anyway, KEEP STRONG and best wishes
SD38

Yes, in that they send you a bill after. But pretty much the same here. If they can find a way to toss you out in the cold, they do. From my experience, doctors are more willing to help. But typically insurance will "deny" your request and you're back to square one.

My heart breaks for you. Why did your surgery fail? Scar tissue? Did you ever get any relief, or? Why are you bed ridden is it just from the TOS or?