Lies, Damned Lies, and Statistics
From Corposcindosis
by csmess
6.5.05
For many reasons, there is no way to obtain accurate, verifiable statistics on the percentage of patients who regret the surgery. I have spent over three years trying to do just that. I am personally convinced, however, that the regret rate is probably much closer to 15-20% and possibly higher. And, I've discovered that the percentage of people in the "thrilled" category is a actually quite low.
Here's the deal. The published studies on satisfaction vary wildly. I've seen regret rates from 0 to 30 percent. But, there is no criteria for what satisfaction is and most of the studies are conducted by people who have a conflict of interest. Just like everything else with this surgery, each doctor gets to make the criteria as he see fit. For instance, one prominent doctor posted his data on approximately 650 patients last year on another forum. He bragged of a 90% satisfaction rate among his palmer hyperhidrosis patients. Once you include axillary sweaters, facial sweaters and blushers, the numbers got even worse. So, basically the guy had to eliminate a significant number of patients from his series to get bragging rights to making life worse for one in every ten patients who visit him with a cosmetic problem. Not very impressive.
The doctors use a lot of slight-of-hand with the statistics and the language to make things sound better than they really are. For example, the website you referenced said 5% were "unhappy with the results". Now, how is that likely to be interpreted by a prospective patient? I suspect most interpret it the way I did. That is, they will think it means the procedure merely failed to cure hyperhidrosis in 5% of cases and the other 95% were cured and ecstatic with the result. What it really means is that 5% live a lifetime of misery with conditions far worse than their original cosmetic problem.
One other thing I have learned through listening to literally hundreds of testimonials from "happy campers" is that the percentage of people who are "thrilled" with the result in the long term is very small. When you speak to the happy campers you usually find people who will tell you that, "well, the side effects of the surgery suck-less than the original condition most of the time, except when they suck more -- like in the summer -- the side effects suck worse then, but I can can manage those side effects by changing the types of clothing I wear and using topical or oral medication. Wearing black all the time helps and I keep a change of clothing handy and the weather is pretty mild most of the year where I live and, yeah I have to use lotion on my hands most of the time which I don't mind too much. I have noticed my hands get cold easy, could that be from the surgery? and yeah I sweat a lot when I eat, but it's still better than what I had before surgery, really I swear....."
I think you get the point. Out of hundreds of happy campers, I've found precious few that actually have anything approaching mild side effects. I don't doubt that they are satisfied, but their outcomes are far different than what is described by the surgeons as the normative result. Whereas the surgeon call it a hyperhidrosis "cure", you'll rarely hear that word from a satisfied patient. "Trade-off" is the operative term among the satisfied crowd. Their hyperhidrosis was displaced and they are happy with the displacement most of the time. It's a far cry from thrilled. Prospective patients are led to believe than there is a one-to-one correlation between satisfaction and mild side effects. That is not the case.
Another metric used by surgeons to measure regret is the number of patients who have had "reversal" operations. This is a bogus metric as well. There is no such thing as a reversal, even for clamped patients. The best case scenario is a modest reduction in side effects if the patient is only a few months out of surgery. After that period, it's hopeless. So, imagine you are a year and half out of surgery and you go to your surgeon to request a "reversal" and he tells you there's a good chance you will get no benefit and it will cost you ten thousand dollars for the procedure. Are you going to opt for a second surgery? Of course not. So, counting the "reversal" rate is a worthless metric.
I sorry for the long rambling post. I'm trying to cram all that I have learned about ETS statistics and outcomes into a few paragraphs and it's tough. It is my belief that if there is any one clear majority in ETS outcomes, it is ambivalence. For most people, the outcome is nowhere near as miraculous as they were led to believe, but they choose to try and emphasize the positive aspects. These folks all get listed in the "satisfied" column of the patient surveys. If you tell your surgeon, "I love my dry hands, but the side effects are horrible", he will likely put you in the satisfied column because you like your dry hands.
Like Mark Twain said, "there are lies, damned lies and statistics".
Edited by: csmess at: 6/6/05 2:52 am
csmess
Consider the following two factual statements:
1 - The vast majority of ETS patients will develop excessive sweating on other parts of their body equal to or exceeding the quantity of sweating experienced in the target location prior to surgery.
2 - Postoperative compensatory sweating is well tolerated by a majority of patients who undergo the procedure.
Both of the above statements are true, but which provides an accurate and clear description of the postoperative result? Obviously, that distinction belongs to statement #1. Which of these two statements are you likely to find in an advertisement for the surgery? If you guessed #2, you get the prize. Statement #2 is usually adequate in a court of law to exonerate the surgeon of charges he failed to gain informed consent for the surgery. There is no end to the treachery that can be accomplished with the proper mix of clever linguistics and selective statistics.
Edited by: csmess at: 6/5/05 10:36 pm csmess
(6/5/05 11:12 pm)
Reply Re: does anyone believe only 3-5% are unhappy w/ the outcome I just found a perfect example that validates what I stated about satisfaction not being a function of "mild" side effects. Compensatory sweating that soaks into clothing where it did not prior to surgery is the norm not the exception.
Check out the post from JRel in the this thread on ESFB:
www.esfbchannel.com/cgi-b...0&start=15
Important things to notice: 1) He is happy with the surgery [so far...he's less than a year out]. 2) He sweats through his shirt and underwear standing still on a warm day. 3) He has to wear extra underwear. 4) He must carry a change of clothing with him. 5) He was clamped at T3 and has CS is roughly equal to others who have had T2 surgery...
and 6) [this one is a prediction that I hope, for his sake is not true, but history is on my side] he will be much less thrilled with the outcome ten years from now and he will no longer be evangelical about it. If he still recommends the surgery at that point, it will be in a far more cautious manner. I've seen this scenario play out dozens of times.
Until that day, Dr. R. will use his early enthusiasm to recruit new patients. That's how this whole little industry stays alive.
JRel is the typical result. The location and technique of the surgery are not significant factors in the outcome. Satisfaction and mild CS are not synonymous. Truly mild CS is rare. The surgery displaces hyperhidrosis. It is not a cure. The descriptions of the surgical outcomes provided to prospective patients are inaccurate, misleading and fail to provide adequate information to gain informed consent. The statistics on satisfaction are hopelessly misleading because the fail to provide an accurate picture of the actual objective results.
Whether the "satisfaction" rate is 70, 80 or 90 percent is really irrelevant. What patients need to know are the objective normative results. Only then can they make an informed decision.
