My Reluctant Surgeon Keeps Bursting My Bubbles

Yesterday I had an appointment with my reluctant surgeon to follow-up my consultation with the second opinion surgeon. She does not agree with his assessment. She said that she and the second opinion surgeon have “binary opinions” about how to proceed. She still does not believe there will be any positive outcomes to the surgery that has been identified as necessary to remove the growth in my pelvis and restore my health. While he believes the only way to improve my situation is to undergo that risky surgery.

As it usually goes, I walked into my appointment feeling hopeful and I walked out feeling deflated. The only time, since my first meeting with her, that I felt any hope is when she suggested that I meet with the second opinion surgeon to get more guidance about my condition and options for how to treat it. I see now that she expected him to support her position. She wanted him to say that I shouldn’t have the surgery because it would be too risky and could considerably reduce my quality of life. She wanted him to take responsibility for making the decision. She had even told me that he might decide to take over my case after reviewing my charts and meeting me and have her assist during surgery.

But the second opinion surgeon didn’t say or do any of that. So yesterday she offered up the possibility of getting a third opinion. She said I shouldn’t view it as a “tie breaker” – because this next doctor’s opinion would clearly fall on either side – but it would make sure that all perspectives had been considered. How many perspectives are there in a case like mine? I can either have the necessary surgery with good outcomes or I can’t. What more is there to investigate? And what happens if this third opinion surgeon’s views land on the same side as the second opinion surgeon? Will my reluctant surgeon still be reluctant to do surgery? Will she continue to seek out other opinions until she gets the support she wants? Had she even considered that she was sending me to see a doctor at the hospital where I was misdiagnosed to get this third opinion?

When I questioned the rationale behind seeking a third opinion, she offered up the option to move forward with another exploratory procedure. This time it would be a laparoscopy. I mentioned that the second opinion surgeon asked if I had had one. The laparoscopy would be done to take a look into my pelvis to see if the structure growing there could be seen with more clarity than from all the imaging and other procedures I’ve had over the last 21 months (countless abdominal and trans-vaginal ultrasounds, two CT scans, an MRI, a colonoscopy, and two failed fine needle aspirations), and to confirm the growths exact origin. The structure and the origin of this growth have been debated since I first became ill and I was under the impression, until yesterday, that these issues had been resolved. But clearly not, and now instead of moving forward to completely remove it from my body she wants to take another small diagnostic/exploratory step.

Although, I should make something clear. She wants me to consent to this small step – the laparoscopy – with the understanding that depending on what she sees she may go ahead with the more complicated resection. I cannot consent to that. I cannot consent to that because my pain specialists have developed a detailed pain management plan for during and after the resection, which if not followed could leave me even more f****d than I am now. The pain plan must be started before surgery for a successful outcome. So the thought of allowing my reluctant surgeon to do something that would put me at risk of having more pain than I have now scares me beyond words.

After the appointment, when I got home, I contacted my doctor that referred me to my reluctant surgeon. Even though he is not my family doctor/general practitioner – he’s the gynecologist I was sent to because of my misdiagnosis – he has managed all my referrals. He’s the only one I trust to help me make the right decisions about this situation. I’ve requested an appointment to see him within the next few weeks. Whatever he says I’m sure will be better than my reluctant surgeon telling me that if I was her sister she wouldn’t recommend I have the surgery, which amounts to I shouldn’t have anything done at all and continue living with this unbearable pain and taking the mountains of pain medication that barely make a dent. Or worse, that I should make the decisions and absolve her from her responsibilities as a surgeon because she might put on her best, god-like performance in the operating room and fail.

This morning a light went on. My reluctant surgeon is not reluctant. She just does not want to do my surgery. She has not only burst my bubbles she has become the fly in my ointment.

 

Miley Cyrus – The Climb

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14 thoughts on “My Reluctant Surgeon Keeps Bursting My Bubbles

  1. I was desperate for pain relief, so when my surgeon said the procedure had a 70% success rate, I thought that was pretty darn good. Looking back, I should have asked him what his definition of “success” was…

    The surgeon believed an increased range of motion in my jaw joints after the surgery would be counted as a success, while I was only interested in pain relief. I didn’t care how wide I could open my mouth, if the pain didn’t improve after the surgery, I wasn’t going to count it as a success. And since the surgery made the pain worse, it was definitely not a success.

    What is your definition of a successful surgery? Is it the same as your surgeon’s?

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    • My definition of a successful surgery is definitely tied to pain elimination. However, I have had my expectations set by the pain specialists who have made it clear that the longer I’m in pain and just the way my body responds to pain the chances of complete elimination become more unlikely. I can live with a reduction in pain that will allow me to get back to living me life. What I can’t live with is not trying at all to reduce it and getting me off all these pain meds. Besides this growth has to come out at some point so why not now when I’m still healthy enough to handle the recovery

      Liked by 1 person

  2. Maybe the problem isn’t in possible “success”. Your “reluctant surgeon” looks to be the real barrier here. If someone reluctantly does something, how much confidence can you have about the outcome? When you talk about the second opinion, I believe that more faith can be heard in your writing. I would proceed cautiously myself but in the end, “reluctant surgeon” wouldn’t be my choice to do any procedure.

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    • That is exactly how I’m feeling now.
      I’ve written about her before and at that time I was appreciative of her cautious approach, but I can’t make sense of what happened in this last appointment.
      She sent me to see the ‘second opinion surgeon’ who is her mentor/teacher and he said without any hesitation that I need surgery. Now she wants to send me for a third opinion from another surgeon who is her peer and most likely was also taught by the ‘second opinion surgeon’.
      How can I have confidence moving forward when she is disregarding the opinion of someone who has been doing this work for 30 years?
      And I agree that anything done half-heartedly never goes well. I can attest to that from experiences in my own career/life

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  3. Reluctant could just mean cautious and conservative — two things not usually found in a surgeon. And if one of your goals is to get off the pain meds, the increased pain from the surgical procedure will not let you do that any time soon… You’re looking at many months of rehabilitation, which can be just as painful as the surgery.

    If the surgery does decrease the pain in one area, it could increase the pain in another. All pain signals share the same transmission lines, so a decrease in pain in one area doesn’t necessarily mean a decrease in overall pain.

    Any surgery is a trauma to the body, the same trauma the body feels when, say, you’re in a bad car accident. And say before you were in this bad car accident, you had never felt that much pain. Now, the pain signals have learned what this much pain feels like, and the likelihood of your body again feeling that same level of pain has increased.

    Maybe the worst pain in your body is centered around the growth, but that can sometimes allow you to ignore the other pain in your body that’s not at the same level. So, if the surgery decreases the pain in that area, you may begin the feel an increase in the other painful areas of your body.

    I’m not trying to dissuade you from surgery. I just want you to be prepared for the results, whatever they may be, because I wasn’t. I was in no way prepared for an increase in pain. And when you’re unprepared, there’s always a price to pay.

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    • I know that reluctant can just mean “cautious and conservative”, that’s how I have been feeling until now. She has already tried non-surgical approaches that have either failed or not delivered the results she expected.
      One of my goals is to get off the pain meds but the bigger goal is to get this growth out. Everything I’ve read says the only way to treat what I’ve been told is most likely a rare congenital condition is to take it out because it can mutate into cancer over time. I would rather have more pain than risk getting cancer in an area of my body where it won’t be easy to treat.
      The pain clinic has been educating and preparing me for the possibility of more pain. They have developed a plan to manage my pain during surgery to make sure that I don’t have more pain after surgery that can’t be managed by my current level of medications or less. My reluctant surgeon is also not acknowledging the pain clinic’s recommendations.
      I already have pain in other areas of my body because of this growth in my abdomen. All of the pain in the other areas of my body keeps getting worse and spreading further down limbs and up my back. The belief is that the growth is sitting on nerves and that the pressure is causing the additional pain.
      I have to do whatever I can to advocate even more aggressively for myself now.

      Liked by 1 person

  4. Sometimes modern medicine seems so limited, in spite of the super-advanced technology we appear to have. The biggest issue with your reluctant surgeon is her inability to appreciate your pain. Your second opinion surgeon had an understanding of that. Can you have your second opinion surgeon do the surgery? If he’s as renowned as he seems to be on paper, there may be less post-surgical complications as well. If not, then maybe that third opinion is the correct solution. That way you can really be sure that you’ve tried all avenues of information.

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    • I don’t think she does appreciate how much pain I have every day and how it limits my life.
      As soon as I got up yesterday morning. I called the referring doctor’s office and explained what happened. They called me back today with an appointment for next week, which is an indication that they understand my distress.
      I’m going to request that my case be transferred to the second opinion surgeon.
      I am also going to be very clear about my loss of confidence in my reluctant surgeon. I can’t imagine allowing her to cut into me for any reason now when it’s so clear that she does not want to do this surgery. She only ever talks about poor outcomes. I appreciate that she has attempted non-surgical approaches to treat my condition but they have failed to yield the results she expected. She has not once suggested that there might be something that could be done surgically to minimize the poor outcomes she predicts.
      On top of this it doesn’t make sense to me that she only sent me to see the second opinion surgeon to get him to agree with her position.

      Liked by 2 people

      • She might be a fine surgeon. But I think a lot of doctors underestimate the importance of bedside manner, and listening to your patient. I have often chosen doctors with much less experience because their bedside manner gave me confidence in them, and I think that confidence is important to setting a positive mental outlook from the patient’s point of view.

        Liked by 1 person

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