Pondering...

I am not discouraging surgery for TOS. Just my decision and why.

I'm sure many TOS suffers have success with surgery...

To cut or not to cut, that is the question on a surgeon's mind, and at their discretion to do so, and if, and only if they deem necessary.

Next to God some say...

Well, at times I feel it's a toss up between a surgeon and a federal judge. Their decisions and judgments will have lifelong effects upon a person's well-being. For better or for worse... right or wrong and everything in between.

Working as a court reporter for over 20 years I have heard lots of stories.

Keyboarding being unmerciful for TOS patients, I still peck away

I have also heard, amongst surgeons and lawyers, that if you haven't been sued yet, you're not doing enough surgery. Word to the wise!!!!! but where would be without them?

And yes, I do know there are too many knife-happy surgeons out there, but I don't think it is at the TOS level. I truely feel TOS is one of the most difficult conditions to diagnose and get the correct help for.

And yes, there are some really bad surgeons that should not be cutting on nothing but paper. And yes, they can make a patient much worse than they bargained for and those are deserving patients of settlements for their added misery. I do get to hear the bad side of unsuccessful surgeries. It's bad all the way for those involved, patient, family, doctors, caregivers, hospitals, insurance companies, lawyers, etc.

Nobody wants a bad outcome for a patient. That is not the desired intent by anyone.

Here in eastern Ky, you can go to the best hospital and end up with the worst results or you can go to the worst hospital and end up with the best results, with no discretion or respect of person. There are many things in a hospital setting that can kill you, or cause you damage and more suffering. Try to stay out of there at all costs.

(MVA 10-2000)

Then later, about 2008 or '09, by info on this forum, I discover I'm suffering with pectoralis major and minor involvement. Finally an explanation. Another problem, yes, but understanding why I'm suffering is helpful. The medical providers were clueless about my "upper body" chest tightness pain complaints and why. So, I don't feel surgery, by the best or worst surgeon, would have been successful by any stretch of the imagination. I feel I was listening to my own body as I never heard a logical reason why I was having soooo many symptoms.

I have had the best doctors and I also have had the worst doctors too. I praise Dr. Atasoy (Louisville, KY) and cuss Dr. Powell (Ashland, KY).

It is with these thoughts and realities that I elected not to go forward with bilateral rib resections and scalenectomies. Major surgeries, and by its own history, not very successful.

And even though I've suffered now going on 11 years, I do not regret not having surgery. And even though I have read many success stories, I do not feel I'm a LUCKY person. I am complicated by a bad neck and back then a very bad back. I do not feel I have the support system to take care of me after two major surgeries. Their depth of willingness would not guarantee a successful recovery. You need to realize your individual potential for success.

Now is not the time to see how things go. Aftercare can cause failure and is often the reasons why a surgery is not successful. Too late after harm has been done.

A surgeon gets credit for both success and unsuccessful outcomes, and most of the time, it's regardless of the "whys" and "why nots".

A story on paper does not necessarily reflect the reality of a situation.

Sometimes it's really not fair to them either. A surgeon takes a patient as they are. Bad habits, bad posture, little knowledge, and a failure to understand and carry out orders for whatever the reasons, all have their part in success and unsuccessful outcomes.

TOS patients are complicated. A cardiothoracic surgeon does many other surgeries besides rib resections for TOS patients. When a surgeon is tauted as a "TOS expert", you should get an expert in TOS. Not a guarantee for success, though. Your chances of successful treatment/surgery/care is greater. There are so many variables to consider.

I am stable and my pain from TOS is mild. Driving being the biggest problem. No surgeon would cut on me now, with my symptoms. I have never felt that my TOS condition was life threatening in any way, other than suffering with pain and lack of sleep, depression, and loss of socia, financiall and family life, which can be hazardous in and of itself. It certainly has taken its toll on my life.

I can only hope that better surgical approaches are discovered, more options for treatment become available, and patient awareness and understanding can be found for this miserable condition. Hopefully, in some way, I pray for relief for all.