Thursday, September 16, 2010

Beware of the Zebras!

After my diagnosis and intermittently since I was diagnosed I sometimes lie in bed at night and think to myself, "Why wasn't this caught earlier?" Since we moved to Boston I've been regularly visiting my PCP doctors and thinking back on the events leading up to the diagnosis it seems clear that something was wrong.

My "medical monitoring" started in December 2009 after Autumn and I drove across the country and I was diagnosed with a DVT in my left calf. At that time I was seeing my PCP doctors twice a month which eventually turned into a monthly visit. In the beginning the DVT diagnosis precipitated by a prolonged cross country drive made sense; however as the weeks and months passed on something wasn't right.

I remember going into the doctor's office, nearing tears, complaining about pains in my leg and being shooed out of the office with another pain medicine prescription. I remember telling the doctors that I don't want pain medicines, I just want my leg to be cured. Every visit ended the same way, "Let's check back in a month and see how you feel then."

I tried wearing compression stockings on my left leg to alleviate the swelling pains from the DVT and shortly after I returned to the doctor's office complaining that I couldn't move my great toe and could barely move the other toes. This turned into the hot topic of discussion at my monthly appointments and every month we'd monitor the movement of my toes. They never really moved but I got used to them and stopped complaining. "We'll see you in a month."

At one point Autumn suggested I get a scan of my legs; I was having pain in my DVT leg and my right knee had started to hurt (attributed to my compensated stride). A scan of my knee seemed to be a reasonable request especially since I think I had injured it over a year ago; however, for the scan of my DVT leg we needed a second opinion. I remember three doctors gathering around me in an examination room looking at my leg and my immobile big toe. I remember hearing them say, "That's strange. I've never seen that before." I got approval for the MRI of my knee but the DVT leg received it's standard treatment: "Let's see you in a month."

Six months later I was diagnosed with a myxoid liposarcoma in my DVT leg.

Last week I decided I wanted to talk to my PCP doctors and tell them about my nights lying awake in bed and how I was feeling. I'm a strong believer of confronting your feelings head on and approaching people directly. My psychotherapist thought I was a masochist. I don't really know what I wanted in meeting with my PCP doctors. Maybe I wanted them to say that they were wrong. Maybe I wanted an apology.

But really I wanted to warn them about zebras for the next patient. There's a saying, "When you hear horse hooves, you look for horses not zebras." With the DVT diagnosis all my complications seemed to have a source. We never questioned an alternative source; it all made sense, but clearly this was a zebra.

The appointment was this afternoon. The meeting was difficult and I started crying the second I saw my PCP doctors. I told them everything I was feeling and by the end of my story they were fighting back tears as well. One of the doctors put his arm on my shoulder and told me how very sorry he was and we ended our meeting with sentimental hugs.

Even though I wanted to see them so that I felt better, I think they needed to see me so that they could feel better. Just as Autumn, my Dad and I have beat ourselves up for not catching this earlier, they too were tormented by the same feelings: scouring their notes and speaking to their colleagues about the situation. They thanked me for coming in and talking to them about my feelings.

I'm glad I went to talk to my doctors today. I think we all needed it.

For everyone else reading, beware of zebras! Listen to your body and if your not getting what you need, get that third, forth, and fifth opinion. Don't wait "another month" till you really have a problem.


  1. I glad you spoke to them Jeffrey. I know this has been a demon on everyone's back. They needed to hear it from you.

    Love Dad and Mom

  2. Wow. Your strength is remarkable Jeff. When you come out from under all this...look at the emotional strength you will have gained. Unreal.
    PS - try a mean Starbucks Dopio (double espresso), black, no enhancements. Oh, and some Tucks ;P

  3. I am impressed, I don't think I could have done that. Kudos to you. I do think it was therapeutic for your docs as well. But you bring up a very valid point, especially in this era that being cost conscious is an extremely hot medical topic. If you have the energy, I would suggest you submit a slightly longer version of this to Spine Line or even Spine Journal. We as physicians need to be reminded of this. In the world of Back pain its easy to write off a patients additional issues that we can not figure out, to emotional/supra tentorial issues!! I think you can help other patients by reminding us of the fact that zebras occasionally may sound like hoof beats as they are approaching. Ask Ricky, see what he thinks. It could be anonymous as design engineer and the relative of a spine surgeon.

  4. In my experience, Dr's generally don't appreciate being questioned, especially re: alternative DX or treatments. The "usual and customary" response is "that's unlikely", or, "insurance won't pay for that". Sometimes being "cost effective" or following insurance protocol can be very expensive. Due to the overuse of testing to avoid malpractice and lack of communication, people need to be proactive and keep asking questions. It's very difficult to do when the experts tell you otherwise.

    Keep up the great work. Love reading the blog.

  5. Hi Jeff! My mom sent me your blog about a month ago and I've been checking your posts periodically. This post really hit home to me as nothing bothers me more about medicine as the "all-knowing" attitude of some doctors. I wanted to congratulate you on your courage to confront your PCP and openly share your feelings and thoughts. You have probably changed those physicians professional lives forever and for the better. I think about you often and am awed by your strength. Keep fighting and living! - David Goddard

  6. Good for you Jeff, that must not have been easy. Clark and I continue to think about you and Autumn every day, particularly when we hear "I'm Yours" by Jason Mraz :) Hugs!

  7. Jeff, this was so moving to read. I admire you for being so honest about your feelings, first with yourself, and then with your PCP doctors. I am so glad they reacted as they did - you're right - they needed to hear this, not only for the next patient but also to ground them in what you are experiencing. We are all human, but your zebras for horses analogy is right on. Thanks for posting this for us all to think about.