February 12, 2013

Muscle biopsy frustrations

  Back in April (almost a year ago), Sadie's neurologist wanted to do a muscle biopsy to help determine if she had a metabolic disease, more specifically mitochondrial disease.  I agreed quickly without knowing much about the whole diagnosing process of mito disease.  The Dr had just come up with this theory about the metabolic disease and I was in a complete haze and completely overwhelmed with her life.  I just wanted answers to the mysteries that surrounded my little girl.
  That was when the headaches began that surrounded this whole muscle biopsy mess.  I was told that the biopsy and tests were preapproved prior to the surgery.  Fantastic!  It would take about 2 months to get the results.  Ok, I'll have patience.  I've waited 6 mo, what's 2 more?  I wait and wait and wait.  I later get a letter from the insurance company stating that the the second test was denied because the first test came back with normal results. Really?  I was already told the test was approved prior to taking a piece of muscle from my daughters leg.  I call the neurology office about the denial, their reply "we will try to resubmit the request again and have the Dr call the insurance company and see if they will reverse the denial".  I asked them "wasn't it already approved"?  Silence on the other end of the phone and then their reply  "Like I said we sill try to reverse the denial"  No answer to my question.
  A few weeks go by, I hear nothing, I call and leave a message, no return call.  Another few weeks go by, I call again, leave a message, this time they call me back and say "we don't know if the Dr has called, he never got back to us to let us know what to tell you, we will let you know when we know".  Another few weeks go by, I call, I get the same answers as before.  Another few weeks go by I still have heard nothing.
  It is now August, I just so happen to be at a different Dr's appt that happens to be in the same building.  I stop in and ask to talk to the Dr's nurse in person.  This nurse told the receptionist she is too busy to talk with me, so I request to talk to the office manager.  I was not a very happy mama.  It has been 4 months of dealing with getting the run around from this office, it's gotta stop.  I tell this manager all my issues with this office and communication that I have had since Sadie has been born.  Of course she apologizes and says wait here and she comes back with the Dr's nurse (amazing how she is not too busy to talk to me now).  The woman has an attitude the size of Alaska and says "I've done everything I can, it is up to the Dr to do his part, I have already told you this."  REALLY!?  I was beyond fuming! The office manager did not even say anything except "I will talk with the Dr and see what is going on and get back to you".  I left hating the office even more then when I walked in.  I wanted to tell them I will never be back, but then I really did not think that I would have a chance to get stuff resolved with this biopsy stuff.  So I vowed (to myself and Sadie) I will never be back to see this Dr or deal with this office after this biopsy stuff gets resolved.
  I wait another 2 months (it's now October) and can you imagine I never heard anything from this office.  I was shocked.  Not!  So I call, again, no return phone call.  A couple weeks later, I call, leave a message, they call me back and say "we still don't know if the Dr has called the insurance company, we would suggest just paying for the test out of pocket if you want the results anytime soon".  I ask "how much?"  Probably between $600 - $1000.  I laughed "oh ok, cause I have that extra money just laying around."  WHATEVER!!
  I was tired of fighting this fight.  I was tired of dealing with this office.  I was just flat out tired!  I gave up.  We were obviously not meant to find out through a muscle biopsy if she has mito disease.  I did not talk to this office again about this biopsy issue.... that is until last week (at least I had 3 1/2 good months of being headache free... from this issue :) ).
  I get a bill in the mail for over a $1000 for a muscle biopsy.  What?!  I was so confused?  1. I thought the test was denied.  2. If the test was run without my permission why have I not received any test results?  My phone calls began to both the insurance company and to my favorite neurology office that I love to deal with.  Insurance office says that it was for the original biopsy that was done back in April.  What?  I was told that it was preapproved and why am I just now getting a bill for something that was done 10 months ago?  I call the neurology office, their reply "We don't need to preapprove those".  I asked them to call the insurance company and figure out the situation and then call me back and let me know.
  Yep, that was all on Tuesday last week and can you imagine that a week later I still have not heard from them.  Shocker!!  I did call the insurance company on Monday and the neurology office did call them and they are going to do a retroauthorization.  At least they did that, but why is it so hard to call me and let me know what is going on?  I HATE THIS OFFICE!!!
  Here is the thing... I finally was at peace that this second part of the biopsy was not going to happen (at least at this time) and I had moved on.  I was exhausted from this fight and decided to put my efforts and energy else where.  Yes, I always keep it in the back of my mind and if I hear anything interesting, I jump on it, but I was not "actively" searching.  But now... I can't help but wonder if this is a sign that I need to start my fight and search again.  I know this sounds strange, but I can actually feel the fight coming back in me.  I can guarantee my search will NOT include this neurology office.  In fact, if I had my way I would NEVER deal with them again.  However, they are the only pediatric neurology office in GR and that is who the childrens hospital consults for inpatients.  I can not burn bridges.  I will have to sort of deal with them if we end up in the hospital unexpectedly (like with the whole seizure issue).  The fight is back on.  Beware world this mama is refreshed and on a mission again!  I already have lots of ideas and directions to go in.

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