Do Doctors Surprise Patients with Surgical Procedures? | Rheumatoid Arthritis Warrior

Do Doctors Surprise Patients with Surgical Procedures?

Some surprises are routine

Last month, I read a blog entitled “Patient-Centered Care Should Minimize Post-Surgical Surprises” by Jessie Gruman. Her article haunted me; I contemplated how I might guess what the right questions are to ask to avoid medical surprises. Actually, it seemed from her post that it might not matter too much whether I asked the right questions. I still might not get the right answers. She begins:

“Rick Hamlin, in an op-ed essay last week, recounted how his surgeon assured him that he would be able to go on a family vacation to Spain three weeks after his open-heart surgery.  In the New York Times piece, Rick described his disappointment and despair at the unexpected six months of fatigue, pain and depression that constituted his recovery.

Letters from patients and physicians alike confirmed that a six-month recovery from such surgery is pretty typical.  They also noted that the surgeon’s unrealistic prediction about Rick’s recovery is fairly common. I’ll leave it to others to speculate about why a physician would so mislead his or her patient.

blue elephant truckInteresting. I might not resist being one of those who speculate about the question of why. But, I’ll save that for later.

Last week, I had some minor surgical procedures done on my spine. (See the post describing Radio Frequency Ablation.) I can’t imagine a new patient being better informed than I was about the Radio Frequency Ablation (RFA). My doctor gave me printouts from good websites about the RFA procedures. I was able to read more online. I even heard online from several other patients who had undergone RFA themselves. To top it all, I wrote a blog post that discussed RFA.

Surprise #1: sedation for minor surgery

The first surprise came the day before surgery. The medical assistant called to tell me she was providing a prescription for Valium for sedation.1 Maybe I’m more wary of side effects than most, but I hate new drugs. She told me that the procedure is “a little more involved” than the previous ones I’d had and doc prefers Valium. Taking a new drug made me more nervous than the RFA, so I told her not to worry about the prescription.

For a couple of hours, I wondered about what the surgery would be like. I thought about the articles I’d read. I had no idea what it would be like. They didn’t really say.

Then, I remembered what the other patients had told me about how it had helped them and was not as difficult as expected. So, I knew I could go through with it. I also knew what I’d tell any friend of mine if she asked: I’d tell her to take the Valium and be a good patient.

So, I called back the office, “Hi. I decided I’m going to do it his way. I’ll take the Valium if that’s how he does it.” I felt good about the decision, but I wanted to know more about what to expect. So, I pressed with more questions, especially regarding post op. After the last procedure (some medial branch nerve blocks), I’d had one very rough day pain-wise. But this time, doc was “burning” away nerves completely instead of numbing them temporarily. So, I assumed I’d feel much better much sooner. Not so.

She said to “expect a slower recovery” and “a different kind of pain than usual.” She recommended rest and ice.

Surprise #2: more pain than expected

It took me a while to talk myself into swallowing the Valium, but the pharmacist encouraged me that I would probably not feel dizzy or shaky. Why are they the side effects I hate most?

The Radio Frequency Ablations went fine. Doc used local anesthetic injections so it was a bit like a major dental procedure. I asked the doc about post-op pain relief. Doc recommended only a couple of naproxen tablets. I asked the MA if they’d object to my taking Lortab (hydrocodone) that is prescribed for my RA pain. Fine. Good. Just in case.

Katie Beth played chauffeur. I had no side effects from the Valium. The thoracic sites stayed numbed for hours but, the local anesthetic wore off in only an hour on the cervical spine location (neck). The pain was harsh. I was grateful for the Lortab. I took it along with mega-doses of ibuprofen around the clock the first couple of days. I stayed in bed, letting others bring me fresh ice packs.

If you know me at all, you know I don’t ever stay in bed. I never use ice packs. And I hate to take to take pain meds.

Well, I was a good little patient; the first couple of days went by without real suffering. That couldn’t last forever. Friday, I had to go get my Actemra IV. Saturday, my sons had their last football games. I wouldn’t have made it without the soft collar leftover from a car accident. A few times, I have gotten brave stupid and let either the Lortab or the ibuprofen lapse. I regretted it.

I’m wondering whether the doc has any idea how much post op pain there can be with this procedure. It’s not in the literature. I think they might have prescribed pain meds when they called in the Valium. Or maybe called me at home to see how it was when the anesthetic wore off. The dentist does.

1The articles described using IV sedation for this RFA; however, my doc does not use that.

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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34 thoughts on “Do Doctors Surprise Patients with Surgical Procedures?

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  • October 25, 2010 at 9:23 am
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    Kelly, that is terrible. Not just the pain you went through and are going through but how easily the doctor and MA dismissed you and your concerns. Sometimes I wish doctors would be doctors again. So much of what doctors used to do (talk _with_ patients, examine patients, have bedside manners that are amazing) have gone to sitting at a computer or laptop in the exam room, talking TO it, only regarding the patient so they can click the appropriate response to a question they have asked, not actually putting hands on the patients or looking at them up close, but from a distance, and heaven forbid they actually tune INTO their patient’s emotional state or have time for answers to important questions.

    I wish there was something I could do to help the pain. Take care of yourself.

    Reply
    • October 25, 2010 at 9:48 am
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      Hi Katie. As long as I rest and take medicine, I’m doing ok. Within the next day or so, I hope to be a lot better, right? Don’t worry about me. Like you, I hope communication could be better though. I trusted the doc’s skill. So, I would have trusted his recommendations post op too. If he knew it could be bad, I wish he’d have told me. I can handle the truth. :O

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      • October 25, 2010 at 1:21 pm
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        Sorry Kelly.Sometimes they seem to breeze over so many things we consider important. In one respect they act like we have zero pain tolerance and at other times it’s as though we can handle anything. Hmm.

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        • October 25, 2010 at 6:49 pm
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          Rachel, that is such a puzzle. Trying to figure out what is ok to say to docs about pain. People act so strange about pain. One patient told me never to tell the doc we have a “high pain tolerance.” How do they interpret these things? You are right: I feel like he thinks I have a low pain tolerance, so why wouldn’t he treat this pain then?

          Reply
  • October 25, 2010 at 12:36 pm
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    Thats it in a nutshell. If your dentist calls to see how you’re doing after a procedure, what the HELL is wrong with the doctor calling after a serious surgery?

    Reply
  • October 25, 2010 at 12:48 pm
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    I have had 5 major surgeries and have been surprised many times in ways like you have. My latest surgery, a nerve and muscle biopsy, surprised me a lot. I didn’t think that it would be all that painful, but I had to take percocet for almost a whole week due to pain. I also didn’t know that when they took out a section of the nerve it would make part of my leg numb and other parts very painful.

    Before the surgery, no one told me about the possible extent of nerve damage I would have. I may not have agreed to the procedure if I’d known this. It could take up to a year for the nerve to regenerate if it does at all. Now I’m left wondering if I’ve just brought more pain into my life than I had before.

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    • October 25, 2010 at 2:28 pm
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      Heather, that just does not sound fair or right. I hope and pray that the nerve will regenerate itself for you, and sooner than later.

      *hugs*

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    • October 25, 2010 at 6:35 pm
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      Heather, I’m sorry to hear that. I hope it improves. 🙁 I wonder if the warning was in the fine print or it was just poor skill?

      Reply
  • October 25, 2010 at 12:52 pm
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    Oh Kelly,

    Don’tcha hate surprises?!

    I received blocks to see if RFA would work for me. The blocks didn’t help my Migraine/cervicogenic issues as my PMS hoped, but he wanted to see me in a month. My pain was worse when the blocks wore off – much worse because now not only did my neck hurt, but so did my head! It did not get much better although the steroids in the blocks helped the inflammation for a short while. When I went in for my appt, I assumed he’d try something else. What a surprise to find that he had scheduled me for RFA anyway! *shocked* So, I starved myself (just in case) and arrived ready to tell him no-way Jose’, only to hear him tell me… no RFA. Huh? He backed that up by telling me to either choose a neurostimulator or “I’m sorry, there’s nothing else I can do for you.” I wasn’t prepared to deal with anything worse than what I already was enduring and I found RFA made the majority of patients I spoke with worse. I also was not expecting him to mention neurostimulators or to tell me I was essentially a hopeless case. I was depressed for a really long time over that one.

    I SO hope it works for you, and I’ll be waiting to hear how it goes. Prayers and fingers and toes crossed for you my friend…

    Reply
    • October 25, 2010 at 6:40 pm
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      I know you’ve heard this before, Ellen: I hope you fired that guy & can find the right doc to treat you. :heart: It’s a shame it is sometimes so hard to find an answer – just finding the right doc who listens & knows how to help.

      Reply
  • October 25, 2010 at 1:10 pm
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    Sorry you had a rough go, Kelly. I often wonder exactly where doctors get their perception of recovery times and post-procedure “discomfort”. I think maybe they are afraid they will plant a worst-case scenario in your mind, and you will then experience the worst case pain and recovery times. Too often, they trust us too little, assuming we can’t take the bad with the good and make our own choices. I hate that paternalistic attitude, but boy is it out there!

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    • October 25, 2010 at 6:44 pm
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      I think you are right – that is a big part of the problem. What if we just politely do not tolerate it? The thing is, this doc (who has never once looked up at my face) really is 1000 times better in manners than a back specialist around here with a reputation for being abusive to patients & staff.. :O

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      • October 26, 2010 at 11:12 pm
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        Oh Kelly, you gave me a deja vu moment; my husband’s neurosurgeon (who does his nerve block injections) must be a brother-from-another-mother to your doc. I call him “Dr
        Personality”, but truly – I don’t care if they give me eye contact or not, as long as they give me “ear contact”. lol

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  • October 25, 2010 at 5:56 pm
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    Praying for you, Kelly. Hoping and praying this works for you and that your recovery will come quickly. In the meantime, take care of yourself and, even though you don’t like to stay in bed, please get plenty of rest! Your body needs rest to recover. That’s what you’d tell other patients, right?

    Do you have a follow-up with this doc? Will you talk to him about the pain and recovery surprises? It might help him become more sensitive to his patients’ needs. Or maybe the only thing that would help would be for him to have the surgery himself, along with the RA, pain, and other complications you and his other patients have!

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    • October 25, 2010 at 6:54 pm
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      Thank you Caysea! I asked for follow up. They gave me 6 weeks. I’m considering a polite letter with thanks & suggestions for improvement of the patient experience. How does that sound? I agree most of them have no idea how much pain we have.

      Reply
  • October 25, 2010 at 6:33 pm
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    I agree with Caysea, if you can let him know how your recovery was it will help others. If nobody complains he won’t know.
    I’m glad you are done and on your way to recovery, hopefully it will be worth the pain and inconvenience you went through.

    The unknown, that is what scares me about having shoulder replacement. Before I have this surgery, I will be sure to read everything I can from “patient experiences.” I have definitely learned this is where to find the whole truth.

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    • October 25, 2010 at 6:55 pm
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      Maybe we can run a poll on shoulder replacement just to get you some more info! 🙂

      Reply
  • October 25, 2010 at 6:55 pm
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    Hi Kelly! Sorry you’ve had a difficult time with the RFA but glad to see that it looks like you’re on the road to recovery. I’m glad you posted what you went through because I think it’s all something we need to remember and think about when we’re undergoing any procedure.

    I’ve been thinking about this a lot lately because of the problems that I’ve been having since my knee replacement in July. Like you, I thought I was well informed about the procedure – this is my second replacement and I used to work on an orthopedic floor during my working days and was well aware of all the different kinds of knee replacements, as well as all the issues (or what I thought was all the issues) that could occur. Unfortunately, I wasn’t aware of the complications that could occur with knee replacements and RA. So needless to say, since having this procedure I’ve been in a living hell with little end in sight. I’m having problems with flexion and extension in the operated knee and am looking at having to go under again in two weeks to have the knee scoped to remove the scar tissue that has built up.

    My ortho, who has operated on me several times, and rheumy finally said that my complications can happen with replacements and RA patients, especially if you happen to have a flare during the recovery. Their mistake and mine was that we were too aggressive in my recovery plan and neglected to be sensitive to the needs of my disease process. A huge mistake on all of our parts and now I’m paying for it.

    So I guess the lesson learned here is that there is never enough patient education, we shouldn’t be complacent in the search for answers regarding these major procedures and that, again, what we do here is not only comforting to each other but an important aspect in learning to live with the ups and downs of our disease

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    • October 25, 2010 at 7:12 pm
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      Jacque, how would we know the complications that are specific to RA?! You are right about patient education! But how would we even find out about all the contingencies? And what on earth of those who never have a break in flare? Can they ever have surgery?

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      • October 25, 2010 at 7:41 pm
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        Kelly, these are exactly the questions I’ve been wrestling with over these past couple of months. I thought that originally I had asked all the right questions and depended on two doctors, who know me quite well, to help to keep me informed of any surprises that might come up about a fairly common procedure, in fact, performed hundreds of times a day in this country.

        I guess one of the main things that we can all do (and I know that you, for one, are good at this) is know how our disease affects our own bodies and be more vocal about what’s going on. I know my body extremely well but still put a little too much trust in the professionals rather than listening to myself. If I had only been more vocal about saying “stop, this is too aggressive and while I understand the importance of what you are trying to do, it’s not the right program for me,” I think my recovery would not have taken the turn that it did.

        I’m not sure what the answers are but I know that I’m glad that we have a dialogue here to talk about it and to try and find some.

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        • October 26, 2010 at 2:18 am
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          Thanks Jacque, very helpful info you shared. I don’t want to lose more than I have now, that is a fear. I’ve heard ROM can be worse after replacement and that many end up having scar revisions, after that, I don’t know if the revisions worked for them. Keep us up to date, hoping the best for you and the knee.

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  • October 25, 2010 at 6:59 pm
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    Kelly
    Sometimes things can get pretty rough.
    Here is a joke that my Chriopractor did not find to be funny. How many chriopractors does it take to change a light bulb? Ans: Only one, but it takes 12 visits.
    Hang in there. We are all rootin for ya on this end.
    Phil

    Reply
  • October 26, 2010 at 7:57 am
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    Hi Kelly

    I’m so sorry to hear about your experience and sadly I’m not in the slightest bit surprised. :-(( I’d just like to pre-empt my following comments by saying that this is one area that has bothered me deeply for a very long time on both a personal and professional level.

    Just briefly changing hats (into my RN hat) the simple answer is that neither doctors nor nurses are generally very well trained in the area of pain management. 😕 More often than not it just falls into the area of anaesthetics (possibly because they perform epidurals and run ICU departments as a rule). Unless a doctor decides to specialise in ‘pain management’, it is just not an area that many even think about in their general day to day work and it’s disgraceful :-X

    My closest friend had a very similar procedure last year but in her lumbar spine region. She is like many of us who will not make a fuss when in pain, however she was in absolute agony afterwards, had to lay down in the car on the way home (a 2hr drive) and was unable to sit for days. She also needed Morphine (which she also had prior to this procedure) and ice to assist in her recovery. I thank God that she did have it as she was offered nothing post procedure.
    What advice was she given beforehand by the Specialist and the Nurse – “Oh it’s a walk in walk out procedure”.
    I did write to the hospital a few days later on one of their clearly displayed feedback forms. Their response when they rang after about 2mths + was not helpful. :talktothehand:

    She suffered a similar situation a few years back following surgery for ‘Carpal Tunnel Syndrome’ when amongst many other shortfalls – on discharge was told that the Dr had prescribed narcotic analgesia, but the hospital pharmacy was closed and in Oz at least you can’t use a script written in a hospital at an outside pharmacy and there was no 24hr service in our region!! In those days – neither of us had ‘strong’ analgesia a home to utilise.

    Many health professionals still focus on a task orientated approach to providing treatment instead of the holistic approach that is really only paid lip service to in many cases.
    Unless health professionals really listen to their patients’ feedback – they cannot possibly understand the pain their ‘procedures’ cause.
    Detachment from patients is still encouraged and whilst this continues I really don’t believe that doctors and nurses can ever truly understand.

    It reminds me of the movie ‘The Doctor’ starring William Hurt. For those who haven’t seen it – he plays a particularly arrogant doctor, who only ‘gets it ‘ when he needs surgery for throat cancer himself. Also a book I recommend is ‘Cry of the Damaged Man’ written by Tony Moore MD where he suffers an MVA and experiences things from the perspective of a patient.

    I know I must have failed patients particularly in my early days of nursing because of inexperience in the first instance, and not having ‘been through it’. However, because of my own fears of being in pain and not being able to communicate this – pain management and palliative care became an intense focus for me in the days when I was well enough to work.

    Of course many doctors and nurses defy the norm. But it’s a lot like finding a good Rheummy – they are there, but they are too few and far between. :rainbow: I believe that education and feedback from patients is the only way we can possibly start to change things.

    Thank you Kelly for your bravery in sharing your recent experience again – I sort of get how difficult it is for you to do so :star: :clap:

    Reply
    • October 26, 2010 at 9:32 am
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      Kathryn, I can hardly reply. Your perception is so good & this is so much good information. Thank you.

      btw: The doc in my case is a back pain specialist, so he does these procedures all the time and should know better. Like you said, the obvious trained detachment is there, but so should be a script or a call for pain relief just in case.

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    • October 26, 2010 at 9:32 pm
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      Bravo Kathryn :clap: Thanks for taking the time to share this valuable information.

      Reply
  • November 2, 2010 at 3:03 pm
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    Hi Kelly — Excellent post!

    Your stories — and the stories of your commenters — on doctors’ lack of interest in the specifics of your recovery point to a problem larger than any one of us or our physicians.

    I’m really aware of this right now as I am recovering from stomach cancer surgery: my surgeon’s advice about what I should expect seem to come from the last patient she talked to, not any systematic gathering of information over time and across patients — something she doesn’t hesitate to do with regard to cancer recurrence, for example.

    Why is this? My current best guess is that physicians underestimate what it takes for us to care for ourselves generally and particularly overlook how many additional responsibilities we have to take on with advances in medical procedures, such as the one you describe, where you did ALL the post-procedure care yourself.

    I don’t attribute malevolence to this lack of attention — just a lot of competition for their time and a lack of imagination.

    I do think, however, that more responsibilities will fall to us as technology advances, requiring more energy, skills and knowledge. I am sometimes stretched to the limit now and am concerned about how those who know less and have less will fare under the load.

    Keep up the great work Kelly!

    Jessie

    Reply
    • November 2, 2010 at 6:59 pm
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      Jessie,
      What a fantastic post. And an excellent case for our doing all that is possible to help to empower all patients, making it easier to get information. There is an important role for sites like this one all over the net to help patients find information & cope with managing that huge responsiblity of our health.

      Reply
  • November 2, 2010 at 10:52 pm
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    I’m late to this party – been traveling a ton, still on the road another 3 days!

    > considering a polite letter

    Just make sure it’s STRONGLY AND CLEARLY WORDED. Polite letters can sometimes be politely read and politely set aside, without it sinking in that you had a REAL PROBLEM, so bad that you’re writing about it weeks later.

    You don’t need to rant (not your style) but to make a difference the message needs to clearly say you had NO idea this was going to happen, and it REALLY hurt and REALLY messed up your life for x days, and you REALLY were not prepared because they did not inform you that this was possible.

    And, that you REALLY feel this was unprofessional, and you urge them to REALLY be more careful.

    In my case, even if there’s a 1% chance of life being a living hell, I want to be told that, so I can prepare for it.

    I know someone – can’t recall details – who was not told there was a 10% chance they’d get extremely sick two weeks after some procedure. Blithely, he planned a long campging trip. Almost killed him. The office was, like, “Whaaat? It was unlikely; what’s the big deal?”

    If we don’t speak up and CLEARLY communicate “NOT GOOD,” they won’t learn.

    Great post, btw.

    Reply
    • November 4, 2010 at 10:52 am
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      Not late at all, Dave! Comments come in across the site at any time. Reading yours, it seems like I’m still too mild-mannered in my thinking. I’m learning. If we are going to educate the doctors ( about RA especially – see today’s post), we’ll have to be firm. Can be hard for all patients. And women. And RA sufferers since our disease is “invisible” but you are right.

      Reply
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