Eh, I'm not really looking for compassion from medical staff. They see sick people all day, all week and all year, so it's only natural that after awhile they become habituated to it.

What I want, and we have a right to demand, is effectiveness. How did the ER of a top ranked hospital discharge me with "undiagnosed chest pains"? It's not like TOS is new. It's been around for decades and I'm not the first person to show up in the ER with it.

In software engineering we typically stay on a problem until it's fixed. And we use problem solving techniques like "process of elimination" and "try a different test". Some doctors do as well, but not enough of them.

I also don't see any advances regarding TOS. What was the solution 20 years ago? Removing the first rib and scalenes, and hoping that (a) it works and (b) there are no complications? What's the solution today? Same thing, right? Where's the progress?

TOS seems so relatively rare, most doctors I have met really know little about it. I have brought it up to doctors and in many cases I know more about the pathology and nuances than they do. It's why I'd make the trip to an expert before doing anything non-conservative.

That's made me think differently and wake up abit..... Compassion is not the issue, its misdiagnoses and incompetence that matters. I'm just feeling sorry for myself of late. It's a scary realisation that despite having such invasive surgery for A/VTOS I still hurt, get headaches etc etc. May be things will improve after the 2nd op OR am I just kidding myself????

I say/think improvement is relative. If you can sleep better knowing you're not in danger of a life threatening blood clot or worse... That's peace of mind. Obviously you've gotten improved circulation so thats a big plus!

No doubt the surgery is invasive. I couldn't imagine knowing you're due for a second one. But I guess what are your alternatives. Just hoping you don't get scar tissue...

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.