Have you ever directly disobeyed your doctor, ultimately to your benefit?

In My Humble Opinion
1

I have been told I need to use a catheter in order to void my bladder. I’ve probably been told this by at least four different urologists as well as a physiatrist. If I didn’t do it, according to them, I’d have major problems down the road. These recommendations began pretty much as soon as I became injured, 17 years ago.

Catheters are what is responsible for the majority of UTIs, etc for those who depend on them. I attribute me never once having a UTI, bladder infection or kidney issue (which is basically unheard of in the SCI community) in large part to the fact that I have never used a catheter. I can also feel my bladder and know when I need to pee, this is another fact that has benefitted me.

Even knowing that I’ve been without problems the entire time I’ve been injured, I STILL get told I need to catheterize myself. Given the fact that I have never had ANY problem that would point to that need, I have full sensation and the thought of pushing a tube up my dick sends shivers down my spine, I feel no inclination to start now.

My point is, if I had listened to those doctors, my quality of life would be much lower. In the SCI community at large, UTIs and catheter issues are a major area of complaint. I know that in the vast majority of cases, a catheter of some sort is required. But I wonder how many other people who’ve suffered spinal cord injuries could have the quality of their lives improved if they didn’t always regard their doctor’s word as gospel. This is common with spinal cord injured patients, because they’ve just undergone a life changing injury and doctors are the only ones who know what to do.

Has anyone else disregarded their doctor’s advice, to the ultimate benefit of their health?

2

I’ve had doctors prescribe me drugs that I refused to take once I learned the side effects. Does that count?

3

This feels a little like declaring the race won before crossing the finish line. When they said problems, ‘down the road’, perhaps they mean further down that road than you are currently. Has that occurred to you?

If in a decade you acquire truly severe and life altering complications, will you still be pleased with this assessment, I wonder?

(Were it me, I’d avoid gloating, out if a fear of jinxing things or begging a life lesson from the universe!)

Wishing you continued Good Luck!

4

I have taken myself off meds before when the side effects were really messing with me. I suppose if I had waited and talked it over with the doctor first then he likely would have ordered a change in meds anyway, so not sure this really counts.

5

The “down the road” comments started 17 years ago. When might I begin to see anything of a potential problem? Would I just go from totally healthy one day to BAM! kidney failure? :slight_smile: And if I had something more happen to me a decade from now, my assessment would change, depending on the specifics (duh!) But it is a fact that my genitourinary system is healthier and undergone much less trauma than a typical spinal cord injured person. I undergo regular blood testing and occasional ultrasound.

And I’m not gloating and I don’t believe in jinxing bs anyway.

6

Have they given you a reason for needing to catheterize? Are they saying you are not completely emptying your bladder, or are they just worried you will start having accidents? Or is it something else entirely? Do they insist that you can’t possibly feel when you have a full bladder, and you are fooling yourself, or are they worried you are going to injure yourself transferring to a toilet in a public place?

Personally, I’ve never ignored a doctor’s advice, but I’ve always insisted they explain something that sounded odd to me, or that I knew didn’t jibe with AMA general recommendations, or something. My OB/Gyn wanted me to start having mammograms when I younger than the recommended age. I asked why, and she said it was because women over a certain cup size can’t really detect things well in a self-exam. I talked about my other risk factors with her, and we decided together that I didn’t actually need one that year, but maybe I did need to start them earlier than was typical, so I guess on that one occasion, I turned down a doctor’s advice, but I more bargained with her; I didn’t just say OK, then ignore it. I think that would be dishonest.

Now, I’ve never had a breast lump, so avoiding unnecessary mammograms I guess was to my benefit, but it wasn’t a big deal, and if I’d had some major risk factor, like the BRAC gene, I would have happily had mammograms beginning much younger. I’ve been screened for it, though, and don’t have it. My only risk factor is that my paternal grandmother had it when she was in her 70s, but it was the slow-growing, non-genetic kind (the age-related kind), which they caught early, and she lived another 13 years, cancer-free, dying at age 86 of a stroke, after being diabetic for more than 30 years.

Anyway, when I go to the doctor, it’s usually seeking treatment, so I’m unlikely to then turn down treatment. But I did other things like follow my OB’s orders to a T when I was pregnant.

7

Double post

8

I have done this (beta blockers for high blood pressure) but then went straight to the doctor next day to tell her what happened and to get an alternative treatment. My symptoms were increasing light headedness and dizziness over five days to the point where I didn’t feel safe climbing the stairs. My doc agreed that I’d done the right thing.

9

I’ve been given different reasons over the years. The incident that stands out most was a few years ago, I suddenly began to have difficulty emptying my bladder. I made an appointment with a urologist (who had experience with SCI). When I got to the appointment, I underwent an ultrasound. Keep in mind, I was there because I *suddenly *couldn’t fully empty my bladder.

Well he reads the ultrasound and tells me, “Sir, you are not fully emptying your bladder. I think catheterization is needed…” I felt like I was in the Twilight Zone. I KNEW I wasn’t emptying my bladder! That’s why I made the freaking appointment. I believe he had a bit of a notion that what I felt was an empty bladder, in actuality it was much more full. Because it was as if he was just completely ignoring me when I told him this was a brand new problem.

I didn’t give him more time to explain his reasoning. He had already shown me enough to know the appointment was a mistake. I just ‘walked’ out of the appointment. His only response to my complaint of sudden inability to empty my bladder was to tell me to start using a catheter. Now it’s only my opinion but I also believe that there is a little bit of, bias? Assumption? Assumption that spinal cord injuries all share certain qualities and one of those shared qualities was catheterization. But that is only my speculation.

I never did figure out why I had that temporary problem. Within another day or two, everything was back to normal and I’ve never had that issue since. (this was 8 years ago)

10

A small matter, but I had a ganglion cyst at the base of a finger. My PCP told me I had to have hand surgery to remove it, followed by PT to regain “most of” my function. He said if I didn’t have surgery, I’d progress to trigger finger and the joint would lock up.

In the time-honored tradition, I smashed it with a book instead. That was more than a decade ago and I’ve had no trouble since. Much cheaper, and apparently more effective, than his strategy.

11

I have another anecdote I have re experiences as a paraplegic with doctors. This one is actually pretty funny. A couple years ago, I hurt my foot/toe from a mishap while working out. It hurt bad. I knew something was wrong and mostly likely I had broken something so I made an appointment with the PCP I currently had (and had been a patient of for a few years prior to this incident).

So I get to the doctor’s office and am put in one of the “secondary waiting rooms” or “exam rooms”, whichever term you prefer. :wink: After the nurse comes and takes my vitals, etc., my doctor walks in, greets me and starts reading my file. After a minute reading, he looks up at me and says, “So you have no sensation below your waist, correct?”
:smack::dubious:
No, doctor, not correct. I mean, jesus christ, the whole reason for the appointment was pain in my foot. Last time I checked, feet are located far below the waist. :smiley: This was not a new doctor either. He’d see me dozens of times before. I thought it had been long-established that my doc knew the particulars of my injury. I chalked it up to an overworked doctor and just gently reminded him that I had sensation. :slight_smile: But damn.
ETA: This was a hijack, I’m sorry.

12

I had one doctor tell me I should give up having cats as pets because I told her I was slightly allergic. I didn’t say ‘go screw yourself’ out loud, but that’s what I was thinking.

I will only give up my cats if I become unable to care for them. Life without them would be so sterile that I would beg for the sniffles I’d be missing out on.

13

Bottom Line - You are the one who makes your health care decisions.

Briefly: I haven’t been to see a dentist in over 40 years. Why? I have no cavities or other dental issues. I don’t take my car to a mechanic unless there is a problem.

I know several dentists who are very clear on the idea that I should drop by one day for an exam. And, yet, they don’t drop by my lab randomly - because they don’t need my services. It seems like it should be pretty straight forward. Need help? Seek it. Otherwise, have a nice day.

In your case, with your SCI, it’s likely that communication & education are what’s needed. If you don’t have a doctor who is willing to listen and engage, find one who is. Although I generally dislike Osteopaths, personally (I’m not a typical patient.), they have a general reputation for being a really talkative crowd who are good at this sort of situation.

14

Based on my spouse’s experience with doctors, urologists, and spinal injuries… urological problems are VERY common. He had to self-catheterize for years. And yes, that did put him at risk for UTI’s but in his particular case he was flirting with kidney damage if he didn’t use a catheter so yeah, appropriate in his case.

And yes, there are assumptions made about SCI.

In my spouse’s case, he had very little sensation from his buttocks down but the assumption was usually that he did have sensation because he was able to walk. It’s sort of the opposite of Ambivalid’s injury - my spouse’s motor neurons still worked but his sensory ones did not.

But, back to the OP - at times I think I’ve been overmedicated for allergies. In particular, I tend to push back when the doctors start offering steroids. It’s not that I never take them, but I think sometimes some doctors are way to eager to hand them out for allergies. But like RivkaChaya I’m more inclined to argue/bargain than simply ignore advice.

15

I’ve had doctors knee-jerk a Rx for statins for a high cholesterol reading, I just adjusted my diet and got it quickly back to normal. No doctor has ever asked me about my diet and suggested any changes in it. Most just throw pills at you. Eat a whole pizza at midnight, and your doctor will give you polls to prevent heartburn.

Another doctor immediately scheduled me for an injection of steroids for sciatica. I said let’s try physical therapy first, he said OK. That worked perfectly.

16

Don’t really have a “doctor”, but the place that carved off my cancer keeps wanting me to come back for “regular check ups”.

Why? We both know I’m going to die. You basically told me so. Why should I funnel a ton of cash into your pockets in the interim? Oh, that’s right. Its your fucking job. You all have house and car payments.

Well, it’s not my fucking job.

17

Mine’s a slightly different situation, but does indeed open up the possibility that Docs are not necessarily right all the time.

Back-story (no pun really intended)! I have a bad back, insofar that I have spinal stenosis and two herniated discs. Problems started around 7yrs ago with acute episodes of disc prolapses every few months, but between times I could still function sort-of OK. Cue to around 7 months ago, and I could barely move at all. Pain was constant and utterly debilitating. Doc prescribes various anti-inflammatories and pain-killers, some of which took a vague edge off the pain, but nothing really helped. Appointment booked with a neurosurgeon to look at surgical relief.

Another back story is I was ‘re-diagnosed’ with glaucoma and had surgery in Jan this year. Surgery (lens removal) was OK, but a few weeks later my eye suffered further inflammation so prednisolone-forte drops (every 2hrs) were prescribed.

A week after starting the new regimen I had a very unpleasant afternoon, feeling all bloated* and bursting into tears* for no apparent reason, but an hour later MY BACK PAIN HAD TOTALLY DISAPPEARED. Like, one minute I’m at my desk working, with a hotpack on my back and dosed up on narcotic painkillers, the next BOOM, no friggin pain, nothing, not a bloody twinge!

So I asked my GP whether there was any chance that I was absorbing the drops systemically and that the cortisone had performed a miracle, and he laughed at me.

Asked an ophthalmologist the same question a few weeks ago (at a social event) and he looked at me strangely too. :smiley:

Now googling suggests that ocular drops CAN be absorbed systemically (some can cause asthma attacks for example) but the consensus is that the amount of cortisone in pred-forte drops is minimal so should NOT have an effect. But given that I was displaying classic signs of cortisone side-effects that very day (the bloating and emotional fragility for example) I still maintain that the doctors are WRONG and the drops have (at least for the time being) fixed my back!! I have not needed any sort of painkiller in over 6 weeks now…and will be cancelling the neuro appointment too.

*I have previously had bad times with oral cortisone, very bad times with high-dose and long term use. I suspect I now have a sensitivity to it (and have reaped the benefits this time) but apparently this goes against medical orthodoxy. Now I just have to figure out how to get my doc to prescribe me more drops when this script runs out!

18

Maybe not “disobey” but disagreed.

First was a series of dentists who all told me I should have my wisdom teeth out. Having had my share of tooth-pulling and dental work as a kid/teen, I was not at all excited about getting MORE teeth pulled in my early twenties. They weren’t giving me any trouble, but the dentists swore they would eventually do Many Bad Things. I said I’d wait until they started giving me problems, then think about removing them.

Fast forward, I’m in my late 40s, they’ve never given me a problem. Latest dentist says if they were going cause issues, they would have already done so.

The other time was more serious. When I was first diagnosed with diabetes, all the local docs swore I was Type 2, despite being relatively thin & active. Now, it’s not IMPOSSIBLE to get Type 2 without lifestyle issues, but it’s uncommon. The common drugs they give Type 2s weren’t doing much for me, so when I finally got in to an actual endocrinologist, I’d had time to study up on things and very much suspected I was Type 1.

Endo was having none of it. I was Type 2, I had to be. 38-year-olds don’t get Type 1 (which is blatantly untrue, as I found out). He did, however, decide to put me on a long-lasting basal insulin. He said average dose for a Type 2 is 50 units a day, so start with that.

I was like… um… I still don’t think I’m Type 2. And Type 2s on insulin need WAY more insulin than Type 1. I asked him a couple questions, and it was apparent immediately that he was one of those docs who did not want their patients questioning them. After a few minutes of back-and-forth, he threw up his hands and said “fine, start with 10 units and adjust as you see fit.”

Which I did. Now, many years later, I still think of that story. I know now that had I taken 50 units at once, I’d’ve ended up in the hospital. My basal rate nowadays is around 16 units a day. 50 would have been very, very bad.

Same doc also tried to put me on a drug (Byetta) which was relatively new at the time, and I’d hear horror stories. I asked politely why I’d go with that as opposed to an insulin. Same story, he threw his hands in the air and said he’d write me a prescription for anything I wanted since I was the expert.

That was around the time that I decided to find the best experts in the country and go visit them for a diagnosis. Best decision I ever made - yes, I was a Type 1. Yes, insulin was the way to go for me. Never went back to that Endo.

19

Oh, yeah - forgot about the wisdom teeth. Same thing for me - although mine came in with no problem for years dentists pressured me to get them out, repeated various scary stories, etc. I just couldn’t see the rationale to remove healthy teeth that weren’t causing a problem.

A couple years ago one of them decayed and I had it pulled - never actually caused me pain, probably because I don’t ignore problems I get them looked at. Other than that… no problem.

Was also told by dentists I needed to be “put under” to get them pulled - when I finally got one yanked all I needed was a novacaine local.

20

I don’t have any significant stories, but I long ago learned that doctors are people, and that the medical profession in the US at least, is very oddly guided.

Doctors are trained to give us universally agreed upon treatments, for the most part. Not to experiment or guess or follow their instincts. This is reinforced heavily by the pressure of the insurance companies and the collusion/advisory pressure of the AMA.

This means that our treatments will be designed to do what’s considered overall best for most people, not what’s specifically best for us as individuals. And some of those treatments will be dictated not by what’s actually best, but what’s most cost effective for the INSURANCE COMPANIES. Some doctors will, and some wont, let you know that there is wiggle room in their recommendations. Some will explain that they are required by the AMA and the insurance companies to prescribe the exact treatments they do.

Finally, because medicine is always evolving and discovering new and often better treatments, and there are always some diseases, disabilities and ailments which have no complete solutions, there are going to be situations where the recommended treatment isn’t measurably more desirable than doing nothing.

The best advice I can think of for anyone, is to talk to their doctors when they don’t like a treatment, and specifically ask what the risks are in choosing not to follow it. This way you can make a logical decision rather than a purely emotional one, AND you can be better prepared to watch for whatever natural downsides might occur because of your decision not to follow the primary advice.