I would like to see the medical profession do follow up on those of us who had surgery and were not made better. I sense that the old figures of 1/3 better, 1/3 the same and 1/3 worse are pretty accurate. In my old profession, law, if we had failed 2/3's of the time, we would have been fired. I don't understand how doctors can continue to use the same techniques for 20 years with such horrible results.

My surgeon told me he was improving his surgical results by choosing his patients more carefully. He wanted patients who were more "motivated." As someone with bad surgical results, it was less than helpful to have the surgeon insinuate that the problem was my motivation -- especially when I was referred to as "highly motivated" before surgery.

Kelly

I can't even imagine. If I might ask - what were you told BEFORE the surgery regarding the outcome, likelihood of scar tissue forming, etc. How many surgeons did you consult with prior to doing it? Did you know right away it didn't work?

Found this link today: http://ves.sagepub.com/content/44/7/550.abstract

I would like to meet or talk to ONE person who has had successful NTOS surgery. Just one. Not a few months, but long term. Would it be illegal or unethical for a doctor to put me in touch with someone he's had previously that was a "success." Just wondering what they constitute as a "success" anyway. Back to work but still in pain?? Or fully healed, or?

I was told that there was an 85% chance I would be better but the surgeon couldn't say how much better. He also said he would wrap my nerves in a wrap that would reduce scarring. I later learned that the surgeon changed to a new kind of wrap or a new protocol because the wrap I got was not effective.

I'm not sure how many surgeries he did before me; I think it was about 30 or 40. He was doing 1 to 2 each week during that time.

I think if you ask, some surgeon will let you contact former patients, or maybe that was before the HIPPA laws... or if the patients agreed to share the info ahead of time.


It might be easier to look at sports players that had surgery and see how there health/stats are a year or more later.
But if they go back to playing hard....possible re injury is high IMO.

Do a web search on Hank Blalock - baseball player had TOS surgery, recovered OK , but did still have reoccurring shoulder injury, wrist sprains etc...

I don't know how that Jonas brother is doing?? He had TOS surgery.

And I'm sure the big money famous people do get extra special care & mega treatment - because if something does go bad - it will be reported on. No surgeon wants his name mentioned in a bad way.


sorry if I sound a bit cynical LOL

EXACTLY. I'm pretty anxious about 2nd op and thoughts of going through it all over again.
Scar tissue is a real possibility. The weather is starting to drop quite abit now here in the UK and I'm starting to get quite alot of signals and tightening from the incision site. Scary, and to the point where it is actually making me rethink my whole outlook regarding WORK V RECOVERY.
I really don't think that working at the moment is an option for me. I still haven't returned ( 8 weeks now) and very anxious as they are expecting me to contact them next week on Monday to discuss what is happening. I don't want to say that I'm not ready to return for fear or them letting me go.
I know my health is more important but the stress of this work dilemma is obviously taking its toll. All this worry over a part time job. I just don't want to lose it as I feel that I will lose apart of myself and the sense of independence that I get from doing it. I'm not keen on the idea of staying at home and not contributing ( no matter how little ) to the household.
Oh dear, here I go again rattling on with an extra long reply...... SORRY, its just that when I get started I try to vent out as much as possible to relieve some tension. I PROMISE..... next time the reply will be short!!

What is the follow up schedule for your first surgery? In other words do Ty have regular MRI to see how well it heals? The blood flow sounds improved which I'd imagine to be encouraging. Plus it sounds like you avoided a collapsed lung and phrenic palsy.

@343v343

I certainly hope as well, that the Cymbalta will be without any serious side-effects, however I haven't had any real side-effects with the Lyrica even though I am on the highest dose (600mg) per day. So I guess that I'm pretty medicine tolerant.
The only real side-effects I had with Lyrica, was weight gain and increased appetite.

perhaps you could share my NCV with your neurologist? Maybe there's something he can use...

I'm doing numerous types of stretches, my problem is that I forget to do them. I'm doing pectoralis minor stretches, neck stretches, physical therapy and lots of supplements. I haven't really ruled out any vascular involvement, but since I don't have any real weakness of the arms or blue hands it has never been a real issue at the doctors office.

I think I got TOS from bad posture, weightlifting, poor working habits, and lots of computer use - even though i was only 18 when this started.

@SD38

have you tried a pain clinic (or whatever you call it in the UK)?
I'm also really trying to break several vicious circles, and I hope my pain clinic is able to help me. I haven't heard of CBT before, what's that?

CBT = Cognitive Behavioral Therapy. Like counseling or "therapy" - which, if you're depressed, is not a bad thing to include in the treatment. I have gone to a few sessions myself as the enormity of dealing with this has taken its toll and added stress to my home life.

Seems those types of medicines don't touch the sensory pain. :-( Will be curious to see if the Cymbalta helps. If you tolerated Lyrica well, my guess is you'll tolerate this one well the same. The weight gain is a pretty common side effect from what I've read. Elavil is also another one that came up in research. Seems both are more geared for diabetic neuropathies however. Good luck with them! Please do let us know your experience.

Do you have droopy shoulders? Just one shoulder sit lower than the other?

I forget if your TOS was both sides or one side or even if you said. I'm curious about the shoulders though.

Both mine were droopy, but one more so and that's the side I have TOS on.

Nope, got normal shoulders (as far as i know). Im pretty tall and i have a real tendency to be very hunched over. My TOS is bilateral :/