You need it the most when you have it the least

I go to my neurologist and say that my back still hurts like hell 73-days after I crushed my first lumbar vertebra, and I ask him what I should do. He proposes a kind of operation called a kyphoplasty in which a balloon is stuffed inside the vertebra, inflated with air, and filled with quick-hardening cement. Now, I know that the AAOS (American Association of Orthopedic Surgeons) doesn’t much like kyphoplasty, but I also know it’s commonly done because there aren’t a lot of great alternatives, and because it’s a low-risk moneymaker that doesn’t require a high degree of doctorly skill and intelligence. Still, it is surgery, and no surgery is so minor but what it can’t mess you up.

So, I ask him if maybe he could he hold off on the surgery for awhile and send me to physical therapy first, and he says that, yeah, that might work, and he gives me a PT referral. I then ask him whether an AAOS-recommended drug named Calcitonin might help, and he says it might, and he gives me a prescription. He no doubt realizes by now that I’ve been reading about my problem on the Internet, and a lot of doctors hate it when that happens because it’s ever so much easier and more profitable when sick people keep their mouths shut and do as they’re told.

Next, I ask him what he thinks of radio frequency ablation as a less invasive alternative to kyphoplasty, that is if it turns out that PT and Calcitonin aren’t enough to get me back on track, and as soon as I say this, he groans and puts his head in his hands. I’ve never seen a doctor do that before, so I just sit there looking at him and wondering what his next trick will be. Not a very good one as it turns out, because all he does is to change the subject. I don’t remember what he changed it to, because I’m thinking, wait just a damn minute here, there’s a question on the floor, so I interrupt him as gently as I can (doctors tend to be childish and fragile) by saying, “From your reaction, I assume you consider RFA too absurd to discuss, but before I consent to surgery, I very much want to investigate less invasive options, and from what little I know of RFA, it sounds promising, plus it’s a whole lot less scary than having my vertebra stuffed with a cement that might escape and wreak havoc with my spinal cord and surrounding vertebra.” He says, “I have two colleagues who perform the procedure, and I will refer you to one of them if you would like.” You will note that, if I hadnt made some suggestions, only one treatment would have been proposed, and it wouldnt have been the preferred one. He showed no empathy, volunteered little information, and became impatient with questions. In other words, he behaved like a typical doctor except for the groaning and head-holding part, idiosyncrasies that brought his grade for the visit down to a D+.

If you’re new to being a patient, you need to know that you can get better treatment if you take an active role in researching every aspect of your problem. Here’s why:
1) You will better understand what your doctor is talking about, and you will know what questions to ask in response.
2) Your doctor will take you more seriously even if he resents your unwillingness to treat him like a demigod.
3) Doctors sometimes fall behind on the latest research, so it's possible that they might learn from you.
4) Doctors like to stay within the confines of a limited number of well-beaten paths that they can walk without thinking, and this means that they tend to employ a surprisingly limited number of drugs, tests, and procedures.
5) Doctors tend to know little about treatments that fall outside their area of expertise.
6) You’ll be less likely to submit to a dangerous and expensive procedure that offers little if any promise of helping you.
7) If you run into an authoritarian doctor who takes the attitude that, “I AM A DOCTOR. How DARE you learn on your own; how DARE you question anything I say; and how DARE you suggest other treatment possibilities,” it will enable you to find a good doctor sooner.
8) You will feel strong, smart, and in control.
9) You will gain interesting knowledge that you can use to your own benefit and the benefit of others.

On the downside, it’s emotionally difficult to assume what verges on an adversarial relationship with your doctor, but, sad to say, the alternative is oftentimes to allow your doctor to run all over you by treating you like you’re worthless and stupid. Obviously, not all doctors are callous, arrogant, unsupportive assholes, but based upon my experiences with scores—at least—of them, I can but observe that most are. Yet, you need them, so the trick is to find a way to relate to them that is as beneficial to you as possible. I’ve learned that this means taking an active role in your own care even if they don’t like it, and being willing to find another doctor if they dislike it enough that it’s impossible to work with them. If this should happen, it won’t be your fault. You will simply be doing what your doctor gets rich from charging hurting people for, which is to see that they get the care they need.

A relative named Patsy broke her back at the same time I broke mine, only her break seems to have left her in considerably more pain. Her doctor prescribed Vicodin, a weak painkiller, that would have been adequate even if it had worked, which it didn’t due to the fact that it made her too sick to take it. So, what does her doctor do when she tells him she can’t take her medicine? Nothing. Despite the fact that he had myriad painkillers to choose from, he left her in pain for no fucking reason. If he had been my doctor, I could have proposed a half-dozen alternatives off the top of my head, but because Patsy knows nothing about pain control, or medicine in general, or how doctors tend to behave, she went home assuming that this man whom she had gone to for help when she was frightened and in pain, had done his best to help her and was out of options. This is what happens to people who are ignorant or passive, and Patsy was both. I can find a lot of reasons to mistrust and despise doctors and very few to regard them positively. So, yet again, I will tell you that you have to look out for yourself. Ironically, you need strength the most when you have it the least.


kylie said...

i know all the standard poor medicine involved with birth and often think that it must be rife in every area of medicine. my big problem is how can the average person wade through the information and misinformation relating to their health problems? i think its next to impossible.

i totally agree with you, though. people just hand their treatment to their doctors and its not only bad because the docs can do any damn thing they want but its bad because the patient thinks they have no ownership over their health. if the general population wasnt in the habit of handing their health to their doctors we might have a healthier society.

PhilipH said...

This is, in my view, one of the most eloquent essays you've posted Snowy.

I heartily applaud your stance on this topic. Doctors are by no means the all powerful and knowledgeable beings that so many people seem to worship them as.

They must now recognise that many of us now have easily obtainable sources of research and information available to us and their opinion is not sacrosanct.

All my best wishes go with you.

possum said...

Good for you, Snow! And excellent advice for everyone.
Here on the Shore, as in many back woods areas, we get many of those Drs that just can't get hired anyplace else. Remember, out of every graduating class, there are those who graduate at the bottom of their class... many of them are in our yellow pages! Thankfully every now and again we get a really good one here who has family nearby or just loves this place and wants to be here. Otherwise, we head out of state or across the Bay, driving over 60 miles one way to go to a doctor. Sad, isn't it?
I do hope you find a good healthful solution. It is hard to get used to being in pain, or to adjust to not being able to do this or that anymore. But, if that is your lot, I have no doubt that you will be up to the task.

Sissy said...

Absolutely a brilliant post Snowbrush and I think it ought to be in some national publication - seriously. All along I've been told to "ASK QUESTIONS, participate in my medical care. Yeah, so I started doing just that and quickly found myself butting a brick wall mostly. So many of the medical field do consider themselves to be demigods, including nurses; ha, even the front receptionist on occasion! No doubt they all know more than I but lowly treatment begets fear and passiveness if one doesn't know what question to ask. Doctors' short dismissal of my questions or requests caused me to give up, then blaming the situation on my impatience, then flaming anger with the whole system.
Being alone and responsible for helpless animals, I can't afford side effects with a doctor's "Hey, let's try this" remedy. So today I cope with my health issues best I can, hoping they don't become worse and I'll perish fast when life becomes intolerable. I haven't seen a doctor since August, when she sharply told me "Everybody has pain" and all along had refused me anything for pain - told me she didn't believe in prescribing pain meds and suggested the mental health services.
I'm thinking that there are coming some drastic changes with health care that may not be to our liking, especially for the elderly; that's bad enough already. Yet I'm one of those conspiracy theorists, so get rejected a lot for my thoughts. We shall see; yes, we shall see.

rhymeswithplague said...

Perhaps the doctor groaned and put his head in his hands because he had good reasons to dislike RFA of which you were not aware, or perhaps he groaned and put his head in his hands because he saw dollars flying out the window that might have been in his own pocket -- we'll never know -- but when you call RFA "the preferred" treatment it is clear that it is you who prefer it and not the doctor. I just wanted to make that point clear.

Mrs. RWP (my RN wife) was having excruciating back pain and was diagnosed a couple of years back with degenerative disc disease and stenosis of the spine. The orthopaedic surgeon who had previously replaced both of her knees and repaired her rotator cuff wanted to do an epidural, which she refused. At that point, Mrs. RWP went to a chiropractor for the first time in her life, neither of us really having any faith (not that kind of faith) in chiropractors prior to that time, and he has done wonders. At first she went once a week, but her visits have settled into a once every two weeks schedule. He may not be an M.D. but he is managing to keep the back pain at bay.

Hope you find some relief.

ellen abbott said...

I could not agree more.

Linda said...

I am the patient who goes in with questions. I also know their medical jargon. When the latest doctor said a word I had never heard, I asked him what it meant. Then, I asked him if he would write it down. I was shocked at how willingly he jumped up, got one of his cards and wrote it down for me. The doctor at the hospital doing a test was explaining something. I said, "Do you mean like peristalsis?" He looked really happy and said, "Exactly like peristalsis!"

It took me a long time to figure out his reaction. I live in an area with people who don't know much about many things. They either don't care or have beliefs that are totally off when it comes to their health.

I suppose I tend to ask questions like you do, questions that show I have been reading or have knowledge. Actually, I learned the word "peristalsis" when I was in the 7th grade.

I am with you on the concrete. When you mess with my spine, you are messing with my brain.

Myrna R. said...

Thank you Snow for your good advice. I've heard this before - to be in charge of your own health and treatments. But never, has this made such an impact than reading it from you, who have gone through so much. It's outrageous that some doctors are so insensitive to their patient's pain. I hope you find a doctor who explores alternatives and has compassion. I hope your relative does too.

Paula said...

I don't even know what to say!!

Charles Gramlich said...

Quite ridiculous. We have to be our own doctors these days, as well as everything else. Why do we pay specialists?

All Consuming said...

"Ironically, you need strength the most when you have it the least." - no truer words were ever written. Well they might have been on a par with them but anyway. You are spot on shock for me. It is the most vital and necessary thing to educate yourself on your health issues and keep up on all possible pain relief and potential cures and the like. This often means taking on a kind of university course, or so it feels, but it is well worth it. It's only off my own back that I found out one of the steroids I was taking was making me suicidal. I'd say dangerously so, but I'm not sure there's any other kind. I found out on the web about a new steroid, just over from your land at the time, and asked my consultant of ten time about it. She was furious I dared to challenge her original decision and said it didn't exist. I went to my loaf GP who was lovely and she prescribed it for me immediately. It made a massive difference to me. There are far more instances, and it can be a battle, all the more so here because we don't get to choose our doctors and consultants beyond the three of four in the local practice (you can't go to one outside of your local area), or in my case, the two consultants at the hospital. Any other hospital is too far away for me to get to. The upshot of all this gibbering is that no matter how hard it feels, or what you come up against, you have more chance of living longer and being in potentially less pain if you take the matter into your own hands. Those who believe their doctors to be Gods, often get to visit the heavenly realms rather sooner than they might have done I find. x

Joe Pereira said...

I agree with you Snow. My life or the lives of my loved ones, will never be in their hands- completely. 20 years ago I developed stomach problems (reflux) and by sheer chance had recently read a science article on digestive system problems associated with the then newly discovered superbug Helicobacter Pylori. Australian doctors discovered this bacteria and it is now proven to be the major cause of excess acid production, ulcers and colon cancer. I had to visit my doctor 3 times and literally beg before he agreed to refer me to the only hospital in West London specializing on the subject. But I had to do the research and find the hospital -that in the days before Google Search. My doctor was not up to date with this subject - thankfully I was! I was eventually diagnosed positive for HP, treated and have never since had as much as heartburn despite eating everything I was told not to eat before treatment. My Doctor would have me still on antacids if he had his way.I would have still had the bugs lodged in my stomach. Incidentally, approximately half of the world's population is thought to carry the bug but only Australia have embarked on a successful eradication program. Ignorance is NOT bliss

Snowbrush said...

"So many of the medical field do consider themselves to be demigods, including nurses"

The staff are sometimes worse than the doctors. They seem to either be excellent or horrible with not much in-between. In my experience the medical staff tends to occupy the former position and the office staff the latter. They are 99.9% poorly paid women who work for rich arrogant men, so maybe that's where they get their bad attitude, but the fact is that if they don't like you, you might as well find another doctor because they will thwart you at every step.

"she sharply told me "Everybody has pain" and all along had refused me anything for pain - told me she didn't believe in prescribing pain meds"

She should be a pain specialist because they're almost that hard to get narcotics from.

"Perhaps the doctor groaned and put his head in his hands because he had good reasons to dislike RFA of which you were not aware"

But which he didn't share with me despite the fact that I asked.

"when you call RFA "the preferred" treatment it is clear that it is you who prefer it and not the doctor."

You misquote me. I said that, from what little I knew of it, RFA sounded promising. I asked him about it because I wanted to know his opinion and not because I wanted to suggest that I knew more about his job than he did. As your wife probably knew when she refused to go along with her doctor's recommendation, any kind of back surgery is serious business that often leaves people worse off than before they had it, and that's saying a lot sometimes.

"I went to my loaf GP who was lovely"

I guess GP means General Practitioner. I don't know if that designation is still in use here. One's main doctor is often called a Primary Care Physician, and the one' I've known either specialized in Family Practice or Internal Medicine. They are the workhorses of doctors and are also the lowest paid. Specialists tend to disrespect them and dump as much of their own work on them as possible. They are also among the nicest of doctors. The doctor whom I wrote about in this post was a surgeon, and surgeons have an often well-deserved reputation for being unpleasant.

kj said...

snow, if a kyphoplasty is an ambulatory care day procedure, my mother had it and it took away her ongoing back pain for good. done by a physiatrist (rehab medicine).

i would never put up with a doctor who would not work with me. i consider myself an equal and i make that clear.

my back kills too. i'm about to begin a search for relief. finished up pt, signed up for the gym, but it's now chronic not episodic pain so i have to try. oh and weight loss for me--the worse and hardest part.

good post


Rob-bear said...

Sorry you are having so much back pain, Snow. I hope someone can do something for you. And that it is something worthwhile. From an amenable doctor.

I usually go to doctors well-prepared with questions and ideas. And I expect to get good answers. I must be fortunate to have good doctors. But they also learn quickly that I know the system pretty well and am not to be messed with. Perhaps 13 years on the ethics committee of the health region does that.

Blessings and Bear hugs, eh? Or just Bear hugs. Or whatever.

lotta joy said...

I'll be losing even the worst of the healthcare I have, in March when HUMANA pulls out of our county. A very poor county where ObamaCare will run private insurances into the poor house, as well as me and Joe.

When I gave my doctor the list of refills I needed, she said "Who has been giving these to you?"

I said "YOU have. For three years."

She disagreed, and said she'd do it this one time, but never again.

And I'M the one who needs a doctor??

But that still leaves us in the position of having to PAY these imbeciles out of our pocket now.

My surgeon said the only pain killer he prescribes is ibuprofen. Because drugs are rampant here, I have to take ibuprofen. I don't see the connection.

I informed Joe's neurologist of the rare, and highly invasive cancer Joe has. The doctor had never heard of it, so he dismissed it as not existing.

MY intelligence hasn't made one bit of difference with these pompous, arrogant, hicks who graduated at the bottom of their class. They are still better than me, an incompetent (meaning not like them), yet highly informed patient.

I was also forced into having THREE CT scans in a month, because the radiologist didn't notice the visible mass tucked into my liver until the last one.

Mir Stella said...

your doctor sounds like an idiot, I can't believe he held his head in his hands and didn't offer alternatives. what a jerk!!!! no other word for it frankly. What's wrong with giving you his opinion about the different options.

Find another doc,

CreekHiker / HollysFolly said...

So true and very well said! I learned this all too well going through chemo with my sister. Her chemo doc was one of the rudest people I've ever met. Would say really nasty things about my sister within earshot! My mother came UNGLUED on this doc and chewed her a new one! When the doc retreated down the hall, the staff and other patients applauded Mom! We never went back...

kj said...

Snow, I don't know if you know that robin had a freak accident and is hospitalized at saint Francis memorial hospital in sf. She fell into scalding water and has been in their burn unit. I know you'd want to know


Snowbrush said...

Some of you commented day ago, but I am just now approving them because I've had no electricity for five days. Oregon has mostly escaped the weather extremes that so much of the US has suffered this winter, although we have had so little precipitation that most of the ski lodges haven't opened. Now, the Willamette Valley, which rarely gets any measurable snow has had nearly two feet of snow (more or less, depending upon where you live), the second storm being followed by ice.

KJ, thanks for letting me know about Robin.