surgeons discouraging patients from seeking support/information

Some posters here have said their surgeons recommended they visit this site.  Others have said their surgeons told them to stay away from this site, that they would get incorrect information here.  I have heard of doctors discouraging patients from using the internet to look for information, and I can understand where they're coming from.  It can be hard to evaluate information online, hard to know what's accurate and what's not.  Sometimes you find just a little information and that can lead you to false conclusions - for instance, you might read that gastric bypass patients should not take NSAIDS and decide to disregard your cardiologist's advice to take a baby aspirin every day because of that, and end up having a heart attack.  So I can understand doctors wanting their patients to be cautious about trusting information found online and to check with their docs before changing meds and things like that.

It bugs me when doctors discourage patients from seeking information, though.  It seems to me that it would be better for them to suggest reputable websites where patients can find info.  For instance, they could suggest patients check out the ASMBS website, the Mayo Clinic website, things like that.  They could encourage patients to discuss information their find with their doctors before making changes to their meds or anything else.  That would make sense to me.  Trying to keep patients from accessing any information does not.  I think it’s a good thing for patients to be interested in learning about their health.  I think it’s a good thing for patients to be well-educated about their condition.

And, in discouraging patients from seeking information on internet forums, doctors are also discouraging them from seeking support on those forums.  People post on this site for info, yes.  But they also post for support.  Doctors could encourage patients to check with them regarding any information or medical advice they find on the forum, while also encouraging them to take advantage of the support they can get here.

What are your thoughts?  Does your doc discourage you from seeking information and/or support?  Or does your doc encourage it? 

I found this site as a result of a recommendation from my surgeon's office.  It was on list of recommended reading.

Cindi

 both surgeons' info sessions i went to recommended this site. i do research on everything anyway, i mean if a dr told me i had a sinus infection i'd look up everything i can (i have one right now so that's on my mind lol), so i knew having a major surgery would be no different. i looked everywhere online, read books, talked to people, etc. i think it's important to look for information on your own and make your own informed decision rather than just blindly following someone.

I found this site along with others from the first doctor I saw when I was looking into getting wls (lapband). However, when I moved and found another doctor who would eventually give me RNY, I mentioned this website and he said to stay out because it would be full of failures complaining about how their surgery didn't work.

I wonder why he didn't want you to hear anyone talk about being unhappy with their surgery?

I remember mentioning this site when I was in my second informational seminar (when I changed surgeons) and they thought it was a good idea to go there but they did caution me not to accept everything I read as fact.

I thought it was a balanced approach. I don't know if tehy recommended tihs site in their actual packet of information Since it was so flawed (full of typos and bad grammar) I couldn't do much but skim over it. I pretty much knew everything they were tellign me anyway from my 8 months on OH prior to surgery.

It makes complete sense to me to caution patients not to accept everything they read online, just like patients shouldn't accept everything their neighbor/coworker/mailman says as medical fact.

During the info session, my surgeon recommended this site as a great source of info. He encouraged attendees to do as much research as possible before committing to surgery. This site has been great for first-hand experiences, YouTube has been great to watch surgeries and other people's journeys and various medical sites to look into the physical and psychological aspects of surgery. 

Whenever I find something new on here, I usually Google it to find out more. Sometimes it's good info, sometimes not. You have to use common sense to weed through some info you find on here and on other websites, IMO. Just because it's on the Internet doesn't make it true. 

Mine has a patient manual that every patient gets. It has a section that list ASMBS, OH, NIH, even obesitylaw among others. The entire manual is also online. They also have their own websites for apnea, diabetes, etc. There is always new literature in the waiting room. One of his patients wrote two books that are well regarded. Since I have mentioned OH and Eggface at support groups I suspect lack of information this has not come up for a lot of people there. They even have support groups for binge eaters, alcoholics, the clueless, etc. in addition to general support. The docs in this program publish a lot so they better believe in education.

It is in the docs best interest to have an informed patient. We all had to go to a seminar to start. Mine has a required online educational program as well. I think the program at this hospital gets it.

I trust my doctors.

Many patients do not follow doctors orders. Or don't understand the orders although they think they do. Studies show this. Does a patient think it is no big deal to stop a med? Or not mention a herbal extract that she is taking that almost causes her to bleed to death on the table in heart surgery because she didn't thing it was a medicine and didn't tell the surgeon about it? Knowing how many people take supplements, shouldn't that question have been specifically asked? Shouldn't the reason a med must not be stopped be explained so the patient understands how important it is to take it? Or do they still not realize it? Or think it can't happen to me? How many times has this been mentioned on TV? Even with instructions written down, do they get read? Happens all the time. Why? How?

There is a reason it takes 4 years of medical school and 3-10+ years of training beyond that to practice medicine. Every case is so individual that what applies to one person might not apply to another. There are just too many variables.

It drives them nuts when a patient comes into the office with an article from a magazine or the internet--which happens a lot--and then they have to take time to address that. If they are unfamiliar with it they have to take time to review it. Then you wonder why you have a long wait to see your doctor because the patients in front of you are taking so long. Try this over and over again day after day when you are overworked and the easiest way to handle it is to "just say no."

Have a parent come in demanding an antibiotic for a kids cold or sore throat even though it is no good for a virus and in a few decades you have germs like MRSA that are resistant to almost all antibiotics. It was just easier for the docs to give in. Do that often enough and they studies they started doing in the 190's or so showed a lot of dosc no longer knew how to prescribe antibiotics apprpriately at all.

I'm one of those on aspirin after a heart attack and a blood thinner for the stent. I figure it's my duty as a patient to make sure that my docs get educated about all my conditions, all my medications so they know the right decisions to make. If I have a question they are only a phone call away. My primary care physician actually has a written list of questions she want to ask me at every visit after reviewing my chart before she sees me again. I am going to do what she says and she knows it. My aspirin and vitamins are written down as any other prescription to take. So to just stop would be disobeying doctors orders. I'm not sure how many people see it that way.

I spent close to $1K on books about WLS and with access to to the medical literature I have a few notebooks filled with my favorite journal articles as well. You can bet I did a lot of research on the web. I got no complaints from my docs. With my research background I know how to evaluate information. Even so I got panicked a few times by what I was reading online.

I came across one anti-RNY site that had a convincing argument against WLS until it started on about how surgeons have for the most start abandoned doing the RNY except for WLS because of the side effect. Uh, wait a minute. They stopped doing that surgery because it was done a lot for bleeding ulcers and medications that treat ulcers like Zantac, Pepsid, etc. came along as well as other non-surgical options. Not to mention the doc who discovered a germ causes most ulcers got a Nobel Prize for his discovery and you can treat that with an antibiotic. Your doctor would know all this. I am just lucky enough to know this because of a research project I did involving GI bleeding. The average person surfing the web isn't. So how is the average person going to know what info is good and which is suspect? My doctor spent time with me over that.

Another post is about vomiting. We can guess that a problem is caused by the usual suspects but we can't be sure. We can only go on our own experiences. The usual suspects are a stricture or drinking too fast or its too cold, too hot, etc. With blood right after surgery? Maybe blood from the surgical wound. Now? The docs have seen and dealt with it hundreds of times.

ASMBS has a consensus on post-op vitamins. Why doesn't everyone in the field know about them and use these guidelines? Why doesn't everyone in the field go on the pre-op liquid diet like my psychologist did to see what it is like so she can understand what we go through? As opposed to the psychologist I saw in the old program I went to where the psychologist was in a building without an elevator--didn't she realize SMO people are prone to heart attacks?

It's just a different standard of care. Most of the time it does fine. May not be efficient, may not be the best. You have to go to Cleveland now for your back. Your said before your local docs didn't see in your tests what they saw in Cleveland where they explained it to you. Your new doc is just in a different league.

Your travels reminded me of when I was consulting out of town. A patient in ICU for heart failure was getting an outpatient dose of a drug by mouth rather than a larger controlled dose by IV. All I did was say the medicine and the dose. I knew what the hospital's Quality Assurance Director sitting next to me was going to say. "You're from Cleveland. You do things different there." That's exactly right. The average hospital in this country used to have under 100 beds. Cleveland has a few over 1200 beds. The top talent is attracted to each other and you need a big patient base for that. There used to be counties in this state that didn't even have a cardiologist or other specialties or even an x-ray machine yet alone an MRI. It affects the care you get.

Where do those docs get support? How do they keep up? It is going to reflect in their attitudes toward patient education and support.

It might drive some doctors nuts when patients bring in an article or other information and they have to address it.  Still, I think informed patients are more likely to be compliant patients.  And I think educating patients should be part of a doctor's job.  As far as I know, it does not drive my doctors nuts when I bring in an article or other information.  If it does, they've never indicated such.  In fact, my PCP indicated that she learned some things she had not known from me. 

I don't wonder why there is a long wait to see my doctor and I don't wonder why patients in front of me are taking so long.  In most cases, I don't see patients in front of me taking very long.  Doctors usually spend very little time with patients, in my experience.  But if they do take a while, I assume it is because the doctor is addressing their needs, just like the doctor will address my needs when it's my turn.