More Daunting Decisions – What Surgeon

I was warned that I would have a long wait from diagnosis to consultant appointment, and it was several months before I received a letter from my chosen hospital.  This informed me that I would be under the care of Surgeon A.  When I received my appointment letter, I did a Google search of Surgeon A and was reassured by his depth of experience and accomplishments.

At the appointment, I found Surgeon A to be very kind and empathetic.  He explained that his approach was to take a long-term view of my care over the next 40 years and that I was really too young for surgery.  That was strangely flattering.  However, I was greatly taken aback when he said I should wait for surgery until I was 55-years-old because I would be lucky if a replacement joint lasted 6-8 years.

I was so surprised by this very limited life for a new joint that I struggled to take in much more of what he said while he gave me additional advice about movement and pain management.  In my head, the phrase “lucky to get 6 to 8 years” was on a permanent loop.  As I prepared to go, he mentioned that he would see me annually to check my condition and that, if at any time, I felt the pain was becoming unmanageable, he would do my surgery sooner.

Off I went home thinking that I should now focus on accepting the limitations I was experiencing with good grace.  I decided to embrace my high pain threshold and stop whining.

In the year that followed, before my next appointment with Surgeon A, I was appointed as a Patient Representative with the NJR and began to become much better educated on the subject of joint replacement surgery.  Having access to the data in the Annual Report, the Public and Patient Guide and, most importantly, to other patients’ experiences was an enormous help in giving me a better understanding of my condition and the options available to me.

It was my good fortune that an early meeting of the NJR Patient Network was held on the eve of my follow up appointment.  My fellow patients were very open in telling me about how they went about choosing their hospital, surgeon and even, in some cases, their precise replacement device!

I was given excellent advice on how I might frame my questions to understand my options in greater depth and I jotted these down on the train ride home.

On reflection, I know that I benefited enormously from the advice of one of the Network members who described her many surgeries.  Her view is that it is vital to have a surgeon-patient relationship where the patient feels able to ask questions and understand the rationale for any procedures.  She described the times she was unwilling to compromise when she just didn’t “click” with a surgeon.

Next day, I went to my annual review with a spring in my limping step.  Armed with my list of questions and the latest copy of the NJR Patient and Public Guide, I felt better informed and more optimistic about asking the right questions.  I was determined to listen carefully, to write everything down and to avoid getting unduly distracted by any single unexpected answer.

As I entered the waiting room, I was further buoyed by the site of these posters which covered every wall:

How wonderful that the message on this poster so succinctly captured the questions on my list!  My expectations were raised, and I was anticipating a much more informative discussion.

When I was called in, my first surprise was that I was not seeing Surgeon A, but his fresh-faced registrar.  He was perfectly pleasant, but did not inspire confidence when he asked how I was going on with my knee.  I replied that my knee was fine, but I was there regarding my hip.  “Your hip?  Are you sure?” he asked.  I promised him that I was indeed sure that it was my hip keeping me up at night and not my knee.  I gestured at the computer screen in front of us which was displaying an x-ray of my pelvis.

Once we agreed that it really was my hip we needed to discuss, I took out my list of questions and asked what was planned for me and what my options were.

The fresh-faced registrar said that, unfortunately, he really was unable to comment on my options.  He added that if I remained under the care of Surgeon A, I would receive a cemented ceramic hip and a type of incision with certain risks.  I asked if this was because these approaches represented the best option for my circumstances, and was told, no, these were the approaches Surgeon A felt most comfortable with, and, therefore, what all his patients received.

In the end, I resorted to the question that women of my age rely on: “If I were your Mum, what would you advise me to do?”  He said he would advise me to seek a second opinion with Surgeon B with whom he was also training.

I confess I felt a bit deflated by this meeting.  Putting posters in the waiting room exhorting patients to “Ask 3 Questions” should, at the least, be met with clinicians who are prepared to answer the 3 questions.

I discussed the meeting with family and friends and decided to follow the advice and to seek a second opinion via my GP.  I was told that I would have to undergo another orthopaedic assessment and that the current waiting list was several months.  I said that was fine, believing I had nothing to lose, particularly as Surgeon A wanted me to wait another eight years before having my joint replaced.

Eventually, I received an appointment with a specialist physiotherapist for the assessment.  This was a real turning point for me.  I was very fortunate to be seen by someone who was exceptionally caring and utterly determined that I should receive the right treatment.

She advised me of three things that made a massive difference to me:

• I was doing the right thing in seeking a second opinion
• Doing so was not, as I feared, a betrayal of Surgeon A
• My increasing pain and decreasing mobility were relevant considerations.

What’s more, she advised me that if I were not happy with my second opinion, I should seek a third, fourth, fifth and so on until I felt completely confident.

Second Time Very Unlucky

Again, after a long wait, I received a date for my second opinion with Surgeon B.  A Google search yielded evidence of his extensive experience, and the nurse at the hospital (pre-consultation x-ray) advised me that he is an excellent surgeon.  Unbidden, she added that I should be prepared to answer his questions succinctly and should focus my answers exclusively on my hip as any irrelevant detail or venturing into trivia would be most unwelcome.

Heeding her words, I made sure I had my questions written down and rehearsed for pithiness.  I took heart in spotting that the “Ask 3 Questions” posters were still adorning the walls of the waiting room.

The meeting was a complete disaster.

Surgeon B arrived accompanied by a young woman physiotherapist who stared at the floor and did not speak before, during or after the consultation.

He asked me why I was there, and I explained I had been advised to seek a second opinion by his registrar as I had questions about the treatment planned for me and how long a new joint would last.  Before I could finish my first question about what my options were, he shouted, “Stop!  Stop there.  You have no business asking about such things.”  He clearly felt that my interest was inappropriate and that I was in some way challenging him.

It was a very uncomfortable ten minutes during which Surgeon B went on to tell me that although I was meddling and out of line, he would describe his practice and the approach he would take if he were doing my surgery.  On average, his patients get an average of 20 years from a new hip, he identified the surgical approach he would take and named the replacement device he would select.

I could not wait to leave and felt deeply upset.  I felt horribly embarrassed, as though I had been presumptuous and overstepped the mark and then got found out and was soundly told off.  It was awful.

I really did not know what to do.  I felt I had the choice of Surgeon A, a very kind person who was predicting a limited outcome or Surgeon B, who predicted a much more successful result, but who made me feel bad.

This choice rattled around in my head for weeks.  I decided to keep taking the codeine and avoided making a choice between Surgeon A or Surgeon B.

At the time, I had forgotten the sage words of advice from other patients and physios about continuing to ask for opinions until you feel confident in your choice of surgeon.  I’m not sure why I forgot about this advice, but I was stuck in a mental holding pattern between choice A and B.

Some time later, a wonderful NJR colleague asked me how I had gone on with my second opinion.  I outlined the bare bones of the meeting and the dilemma I felt I faced.  She insisted I should seek a third opinion immediately and set about making this happen.  I am immensely grateful to her.

Third Time Is The Charm

As a direct result of my NJR colleague’s intervention, I sought an appointment with Surgeon C.  By this stage, I had had a fall and was feeling concerned about the way my hip function was deteriorating.

In light of past experience, I concluded that I should not attend any further appointments on my own.  Mike, my husband, agreed to rearrange his schedule to come with me.

As an aside, I would say, no matter how confident and prepared you feel as the patient, it really is important to have someone else there to take in the information you are being given and to remind you if you forget to raise something.

There is a world of difference between acting as an advocate for someone else and receiving information yourself, as the patient.  I have concluded that it is very difficult to process information dispassionately and accurately when it’s your body being discussed.  I recognised that I had a tendency to get stuck on a detail mid-conversation, and I certainly did not want a repeat of my experience with Surgeon B.

So with some trepidation, we arrived for a meeting with the very experienced Surgeon C.  I need not have worried.

Instantly, we were put at ease and filled with confidence.  Surgeon C reviewed my notes and x-rays and asked me questions about my pain and movement.  He explained my situation clearly in terms that were easy to understand and gave me his advice – that I should not hesitate in having my hip replaced.

He inspired total confidence in every way.  I did not need my list of questions and concentrated on listening to his advice which was comprehensive, clear and reassuring.

When he said, “I’m thinking because of your age, activity and height, option A device should be….and that I should have option B as a back up just in case, but I would be interested to hear your view,” I wanted to shout “hallelujah!”   Not because I had a strong view on device A or B, but because this was confirmation for me that Surgeon C was applying his knowledge and experience to work out what would be best for me given my specific situation.  That was all I really needed to know.

That he was so delightfully nice and kind and such a great communicator provided the icing on the cake.

I wish his approach could be bottled and shared with other surgeons.  I hope he has lots of students who are learning from his technical skill as well as his humanity and communication skills.

Because of Surgeon C, I am now facing my date with destiny in two days with much more confidence than I imagined possible.

I am sorry for the self-indulgent length of this posting.  I hope that describing my experiences may help other patients feel confident in choosing a surgeon.

To recap the excellent advice I received from others:

1. Do not be reluctant to request another opinion
2. It is important that you feel confident in your choice of surgeon
3. Do review the surgeon-level data available at: www.njrsurgeonhospitalprofile.org.uk This is a developing area, and the data available now indicates whether your surgeon is providing data to the NJR and how many similar operations he or she performed.
4. Do prepare questions (the Ask 3 Questions are spot on)
5. If possible, always bring someone else to any consultations.
6. Do seek advice and support.  Arthritis Care provides a great online forum http://arthritiscareforum.org.uk/ and a free helpline.  Patients are also very welcome to join the NJR Patient Network.