Second Opinions

As I’ve stated many times already, I’m a mess.  I have mental blocks that cause me to do or not do things that I know, intellectually, are silly.  Yet it doesn’t stop them from affecting my behaviors.

One of these mental blocks is seeking a second opinion.

Here’s an example of a time that a “second opinion” snuck up me without even really realizing it…and how the “fall-out” was exactly what has kept me from actively seeking second opinions.

In April 2013, after switching to my second rheumatologist (“Dr. B”), I was referred to an ophthalmologist (we’ll call him “Dr. O”).  Dr. B referred me for dry eye testing to confirm the Sjogren’s diagnosis that he suspected from my new blood work.  He indicated that Dr. O was someone that has handled many Sjogren’s cases and is familiar with the dry eye testing – he said it wasn’t difficult but that Dr. O was already familiar with it.  He did ask if I saw an eye doctor and I said that I did (annual exams for glasses/contacts).  Dr. B told me that I could go to my regular optometrist but he wasn’t sure if my specific one was familiar with the techniques that he was requesting (there’s more than one way to test for dry eyes, apparently).  I didn’t even really think much about it and said that I’d just go to the Dr. O that Dr. B was suggesting just to make it easier (they’ve already worked together and we know for sure Dr. O already is familiar with what Dr. B wants him to do).   This exchange never even occurred to me as setting up a “second opinion” circumstance – if it had occurred to me to look at it that way, I probably would have chosen different because of my “mental block” towards second opinions.

I went to Dr. O, he performed the dry eye testing, confirmed that I did indeed have chronically dry eyes.  He placed temporary punctual plugs into the holes that allow tears to drain out of my eyes to try to keep them around longer.  A week later I went back and said I hadn’t liked the plugs so he gave me a prescription for Restasis and did my field of vision test (one of the medications I’m on for my autoimmune disease has a side-effect that can damage the eyes – so anyone that is on this specific medication needs annual testing to monitor the eyes for changes).  He had me re-book for a follow up appointment in a year.

This all seemed pretty straight-forward and normal to me (well as normal as chronic dry eyes and punctal plugs can be).  I never thought any thing more about it in terms of which doctor I’d gone to see after that initial conversation with Dr. B.

And then my kids and I went for our annual eye exam at our regular optometrist in mid-August.  My two kids each had their turn having their eyes checked and updating their lens prescriptions.  Then it was my turn.  I sat in the chair and started telling the optometrist about how things had changed since the last time I’d been there.  For the previous 24 years I’d worn contacts and just had a pair of glasses as “back-up” that I only updated every few years (my prescription changed so minimally from year to year that the back-up glasses could be a couple years out of date and still work for as little time as I used them).  I let him know that I had been diagnosed with Sjogren’s and that I’d gone to an ophthalmologist that I was referred to by my rheumatologist.  I told him about the punctal plugs and the restasis and the order from Dr. O that I not wear contacts because they were beginning to damage my eyes.  Mostly I went through all of this because I wanted to let the optometrist know that I wouldn’t be needing a contact lens prescription or the “contact lens fitting” that you always have to do.

The optometrist immediately became defensive and indicated that he could have done all of that for me.  He had done a special imaging of my eyes in 2011 when I had first gone on the medicine that has possible side-effects related to the eyes (2013 was my second time being on it after it didn’t work the first time).  In fact he still had those images in my file in front of him.  He picked them up and let them drop back to the table and said “Now there’s two doctors in the mix with it.”  He also made some comment about MD’s always referring to other MD’s because the OD’s weren’t seen as being as well qualified.

I beginning to feel pretty anxious at this turn of events.  As I mentioned earlier I hadn’t even considered that my going to see Dr. O had been a “second opinion.”  I see lots of specialists.  I go to an endrochronologist for my thyroid hormone regulation, a rheumatologist for my autoimmune disease and I’ve seen various other specialists throughout my life for other issues.  When Dr. B referred to me a specialist to have a test done to confirm his diagnosis, I never even considered that it would be viewed in this way by my regular optometrist.

I immediately began to backtrack and muttered my way through some explanation of “I just did what my rheumatologist said to do.”  It was clear that the optometrist felt his toes had been stepped on and I wanted no part in the blame for that.  He was, after all, just about to do an eye exam on me and I prefer to have my medical professionals thinking of me in a positive light while working with me.

So this is a beautiful example of why I have the mental block towards second opinions.  This had never happened to me before this incident, but yet I always felt like there would be some kind of backlash from seeking a second opinion.

I didn’t want any “first” doctor to think that I didn’t believe/trust/respect/listen to him by my requesting a “second” opinion.  Even though it had never happened to me before (mostly because I’d never sought a second opinion for anything in my life), I had always imagined that it would.  I imaged that if I then went back to the “first” doctor after having met with the “second” that the “first” would somehow treat me differently.  Like he didn’t really want to be working with me or like he was thinking “well then why don’t you just go to the other doctor if you don’t think I’m doing the best for you.”  I even go so far as to imagine that even if I never went back to the “first” doctor – even if I continued with the “second” – that the “first” doctor would be out there somewhere holding a grudge against me.

I’m a non-confrontational person.  I’m a pleaser.  I don’t want anyone to not like me.  I don’t want anyone to have a reason to not like me.  I don’t want to make anyone feel badly about themselves.  This isn’t just about medical professionals – these traits extend to every part of my life.

I hadn’t even MEANT to be seeking a second opinion with this ophthalmologist/optometrist thing and I STILL felt the backlash that I’d been fearing!  And the worse thing about this experience in August 2013 is that it happened right about the time that I was starting to work up the nerve to seek another opinion on my autoimmune disorders in general.

I had been wanting to switch doctors during the second half of 2012.  For a variety of reasons, I didn’t feel like Dr. A was a good fit for me.  I didn’t feel listened to and I felt like each appointment was just going through the motions – she would check each joint, mark down which were tender on her little picture of a skeleton.  Then if the medication I was on wasn’t working after the necessary amount of time for that specific medication she’d switch me to the next one.  But my “second opinion mental block” stopped me from doing anything about it.

Then in January, 2013, Dr. A stopped practicing in my town.  That’s when I switched to Dr. B – guilt free because I hadn’t sought Dr. B while Dr. A had still been a possibility for me.

But now in the fall of 2013 I was feeling all the emotions and issues I described in “Musical Diagnoses” and I was starting to doubt if everything was pinned down just yet.  I was also feeling like Dr. B had been very thorough in the beginning (ordered new blood work and x-rays, “stepped back” to look at my diagnosis with fresh eyes, etc.) but that lately things were just on cruise control.

At my appointment with Dr. B in May we went over the results of my dry eye testing and the notes from my visits with Dr. O.  He asked me how I was doing on my medications (I was 2 months into one that needs 6 months to determine if it’s effective and I’d been on a low dose of prednisone – something I don’t like using – for two months).  I indicated that the prednisone had seemed to decrease my pain noticeably.  Dr. B told me to go on half dose for a month or two and then go without the prednisone all together and to continue the other one to see if it will work or not.  Then he didn’t have me re-book.  He didn’t request a follow-up appointment.  It was the first time I’d left a rheumatologists office in 2 years without the doctor saying “set another appointment up for [some length of time] from now.”

I thought: “well, maybe he thinks this is going to work.”  Maybe the prednisone has knocked down the inflammation and pain enough that it won’t come back and the other medication will have a chance to kick-in and I’ll be stable for a while.

Then I weaned myself off the prednisone and the pain came back – with a vengeance.

I called his office, left a message with the nurse and received a call back to go back on the half-dose of prednisone and an appointment for over a month later (I had indicated in my message to the nurse that the doctor had not requested that I set up a follow-up appointment so I didn’t have one that I could just wait and talk to him about this issues at my next appointment).

This was around the time I started thinking that maybe it was time I make the drive to KU Med – the teaching hospital an hour away.

Then the optometrist appointment happened and I thought “maybe that mental block was right and I should just leave well enough alone and not seek another opinion.”

I went to that next rheumatologist appointment in September.  By this point I’d been on the autoimmune medication for 6 months.  I’d been on it for 4 months in 2011 under Dr. A’s care.  Dr. B said that 4 months wasn’t long enough to determine if it was working or not – it needed more like 6 months…and put me on it again.  So here I was, just past the 6 month mark and it wasn’t working.  If I went off the prednisone, I hurt like crazy.  Even with the half-dose that he’d put me back on, it hurt enough to be constantly noticeable and an intrusion in my daily life.  In fact, even the full dose that I’d been on for 2 months back in the spring hadn’t taken it away – it has just “noticeably reduced” it.

Dr. B’s response to me summarizing how I felt on these medications was to say “If you don’t think it’s working then just stop taking it.  You’ll know in 6 weeks or so if it had been working or not.  Come back in 3 months.”  (To be fair he said other things, too…those two sentences weren’t all he said during the appointment, but that was his recommendations for the immediate future).

By the time I got home, these recommendations/plans weren’t sitting well with me.  I’ll talk about “symptom creep” another time, but basically it’s very hard to judge exactly how symptoms change over long periods of time.  I can tell if I hurt worse today than I did yesterday.  But it’s hard to accurately judge if on average I hurt worse today than I did on average 6 weeks or 6 months ago.  A lot has happened in my life during that time and our memory of things fade and warp.  An example of this phenomena is that women often have more than one chid because the accurate memory of discomfort and pain of pregnancy and childbirth fades over time until another child is worth going through it all again! 🙂

This “well, just quit taking it and see if you start to hurt worse” wasn’t exactly my idea of proactive treatment.

Even at that point, it took me another 4 weeks and two times of talking about it with my therapist before I finally made the call to get an appointment at KU Med.  That’s how strong my mental and emotional block is towards seeking second opinions.

I know that it’s my body, it’s my illness, it’s my life.  I know that I have the right to seek as many opinions as I want.  Intellectually I know that I should not feel bad in the slightest for seeking a second opinion.  It’s not like I’m “cheating” on anybody.  And even if a doctor does take it offensively (like the optometrist did), that shouldn’t stop me.  I cannot control how other people react to things I do.  I can only choose to do things based on my best interest (as long as it’s not harmful to others…I’m understand that you can’t take this attitude too far and become completely egocentric!) and if another doctor gets offended because I asked someone else for an opinion then that’s too bad for them.  Actually, they should want me to get the best treatment possible and if they’re not the right person for that then they should probably help me find the person or place that is.

I went to the initial appoint at KU and have the follow-up appointment to discuss the results of all the testing next week.  I have another appointment with Dr. B in December (the one that I made as I left that last appointment).  And even though I “know” all those things in that last paragraph…I’m still dreading that appointment because I’m concerned that he’ll be upset that I “went over his head” because I didn’t “trust that he knew what he was doing.”

Like I said, I’m a mess.