Battling insurance for help

Last time my husband or I blogged was a while ago.   I wish I could say that he is all good, but the last six months has been one big roller coaster ride.

Here is the summary:

• Went to Neurosurgeon specializing in nerve stimulators.   He diagnosed my husband with "occipital neuralgia.  After reviewing his records, he said we have tried all viable avenues and should proceed with nerve stimulator.  (Which we were already told this by the referring neurologist who told him there is nothing more she can do.)
• Our plan was to schedule this first procedure in May when the Botox was expected to wear off.    One week after the appt.  insurance denied coverage, but we were entitled to an appeal.  Procedure deemed "experimental and therefore insurance does not cover experimental procedures."
• Botox wore off two weeks earlier than planned,  effective for only 6 weeks, instead of the 2 to 2 1/2 months previously.  DR will  do Botox only every 3 months.   In order to bridge gap,  tried an occipital block.  Worked perfectly all day, and then that night  went from perfectly fine to uncontrolled nausea and pain in a matter of five minutes.   Told to take zophran under tongue and phenergan by mouth to try to get it under control or go to the ER.
• Next week had some relief, so long as he did not try to do anything with any exertion (lifting, running, or sex).    Just calm mild movements for moderate pain reductions.   If he felt well enough to do something more, he would pay for it that day and the next.
• Did Botox a week early, to help get pain back in control.   Again lasted only six weeks.  I don't mean some relief, I mean total relief and then total pain.   Botox A works better for him than anticipated for most patients and always has from the first time he got it.  The only problem is, his body gets used to it quickly and he loses how long it works for him.
• Called referring neurologist for help with appeal. They submitted written request and medical records.  Insurance denied again.
• Wrote first appeal, trying to bullet why it should be approved according to the insurance company's own policy.    Denied again.
• Tried a different Botox variant  (Botox B or also called Myobloc).   Never got total relief as with Botox A, but there were days pain was milder.  Also not able to do any type of activity or he will get really bad for 2 or 3 days.  Still has very bad days even when doing nothing.
• Called the issuance company to see what evidence we could provide that would help them reconsider and approve this procedure so that my husband could go through day without severe pain and vomiting multiple times through out the day.  They told him there is nothing we can provide.  Experimental is just that and there is nothing we can do to change their mind.   When asked then why I am I told that I need to file an appeal if there is nothing we can do to change your decision, they back pedaled and said if you have new information, you can submit it.
• Met with DR doing the Botox,  she wants to try Botox B again in November.  Then the next time we can see if Botox A is more effective.  So we may have another rough 3 months ahead of us, OR.....  let's hope this time is works better and LONGER.    Please oh please, be longer and better.    Must keep hope.  It could be different and any relief is better than no relief.  Meanwhile,  she has been the DR who has required that he not be on any pain med since he began seeing her 15 months ago.   Other doctor allowed max of twice a week.  This doctor felt that was too much still.   She now will allow him to try something for the pain since pain is unmanaged for long periods of time. (Like that is new, it is only managed when on Botox or Radio Frequency Ablasion, never once on any drug or other treatment.)   Since my husband is knocked out by percoset and unable to drive or work or do really anything.  The pain comes back as the medicine wears off,  the doctor decided to prescribe pain patches, that release a small amount of pain medicine, all day everyday.  Hopefully this will give him function and drivability.   We will see, but meanwhile it it requires insurance pre-authorization and the doctor has not done that yet.
• Got a referral to a new neurologist to see if he has any suggestions  (since last neurologist was out of ideas).    Will see him on Halloween.  
• Europe gains approval to use occipital nerve stimulation, after a new study was released in Europe.
• Called the three different nerve stimulator companies,  asking for help.   Case studies for appeal,  studies in the US that we can participate in.   One told us they only work with the doctors offices and to have our DR contact them.   Another said,  there was probably nothing we could do to change our insurance company's decision.  The third one told us to change our doctor to the one that uses their device and they (the DR and the sales rep will try to help with our appeal, by submitting it a different way.  He said he wished we hadn't already wasted two appeals by having to do it ourself without the help  that they hope to provide.   He did say he can't promise anything and called us back later with a name of a DR willing to take on our case.
• Called DR's office that the sales rep recommended  and was told to get referral from DR and submit medical records and then we will be contacted if Doctor is willing to see us.   HMMM,  okay,  the circle we have to go in to get any help.  Done both of those things this week, now just waiting to see what happens.
• Went to sleep specialist for annual visit.   Waking up in pain throughout the night.  Ambien only helps to get to sleep and last only 4 hours.  Phenergan for nausea works better than Ambien.  Ambien extended release is not covered by insurance.  Was prescribed Lunesta at this visit.  Insurance denied it too, without first trying Sonata.    DR has been out of office this week and  so hopefully will soon fax new prescription to pharmacy.

So to sum it up.   Waiting to try two new prescriptions, because our insurance company will not approve what his DR prescribes without jumping through all these hoops first.

Going to see two new doctors in hopes to find some kind of help somewhere.  Someone somewhere has to have the right answer to help manage it.   We are to the point now, where we have come to accept this is going to be part of our life for years to come.  We hope to be wrong, but it just hasn't gone away on its own and now we only have doctors trying to manage the symptoms, not figure out the why.  It is baffling to them all.  They have done all they know to do and you can't fault them for that.

We have and have  had great doctors,  we don't blame them, but sometimes feel the insurance company stands in the way of quality care.  Doctors don't get paid except for the visit, so all the calls to change prescriptions are often slow to come, because doctors are doing what gets them paid....seeing patients and hopefully help them.  Doctors don't get paid to think about how to help you once you leave their office. Their plates are full and in a day they see so many that they often don't have the time to give a second thought to your  case until you are scheduled to see them again.  This is fine and good if what ails you is simple, but unexplained pain is complicated, because the cause is not exactly known.  We are guessing the headaches are in result to multiple head injuries as a child and teenager, but in reality that is only the best guess.  I also understand the insurance companies position, but trust me if they had a better idea of what to do,  we would gladly do it.

At this point, we just need a new door to open.  Something to make the days go on a little easier.   Our five year old boy deserves to be able to play ball or ride his bike with his dad without it causing so much pain that dad is throwing up in the bushes.   It should not be a normal question our kids ask,  "Dad, are you throwing up again?"  "Yes"   "Oh, okay", as they continue playing, because this is a normal day in these little ones lives.   Just a normal every day occurrence.