No news does not seem to be good news

I am playing the waiting game once again.  My head is killing me as I sit here.  I couldn't concentrate enough to work and I couldn't lie still with my ice pack anymore.  The Celebrex was not a miracle cure unfortunately.  I called and left a detailed message for the new doc.  I got a return call from his research assistant yesterday evening.  She was calling to let me know they "haven't forgotten me" but he is still in the process of talking with all of his colleagues and trying to come up with a plan for what to do next.  I am just not patient anymore.  I did not want to have my 3-year anniversary of the Evil Headache but it looks like I will.  That will be January, only a month away now.  Before I went to see this new doc I had been researching on the internet (as usual!) and discovered this group named Migraine Treatment Centers.  Anyone heard of them??  They seem to be a network of physicians specializing in pain management who actually implant occipital nerve stimulators, spread out in different states across the country.  They have a physician in Tennessee, which is not that far from me.  I had called to get a little more info and talked to someone who suggested I see the doc in Tennessee.  I was asked to get my medical records and fax them to them so they could schedule me.  I have not been able to get all of them yet and received a call from them today checking to see if I still wanted to see the doctor.  It just seemed like a kinda telemarketer type call.  I am just a little nervous about letting just anyone implant something so near my brain.  I had almost completely decided to let a neurosurgeon do it instead of a pain management physician, but.... if this doctor is more available and possibly more used to getting insurance approval....  I don't know.  I'm not sure what to do so I did nothing LOL.  That is me.  I am on the no-plan plan I guess like Polly in Along Came Polly the movie.  Guess I will think about it a little more.  Now maybe I should try to get some work done.

Edit 1/31/2012: I have definitely changed my opinion about neurosurgeon v pain management physician doing surgery.  I have had the opportunity to meet and/or talk to different pain management physicians now and I must say that they all seem brilliant and have much better bedside manner than any neurosurgeon I have met or talked to.

Feeling a little hopeful again

Yesterday my wonderfully hunky hubby drove me to an appointment with a new neurologist in Birmingham at UAB.  I really like this doc!  He wants me to try Celebrex, which I am a little bit scared to do I admit after my encounter with the Indocin, but he says it is much easier on the stomach than the type of anti-inflammatories like Indocin.  I am trying it while he talks with some of his headache specialist buddies at Mayo and Cleveland clinics.  If the Celebrex does not magically cure me it is probably on to the stimulator.  But this doc is completely different than the last one.  He says that I am a special case as I cannot tolerate the Indocin and he really doesn't see me NOT being able to get a stimulator!  But he only recommends 2 places getting the surgery done - Mayo Clinic or Cleveland Clinic.  Hmm.... that would be very interesting to see how me and my family handle traveling for that.  I'm not really sure how we would do that but whatever it takes I don't care.  I'm sure we could figure it out if it meant a chance at having fun mommy/wifey back again!  Of course a clinical trial is still an option we are considering, and I am on a waiting list for one for Mayo Clinic and my new doc is going to talk to the doc who added me to that list.  Maybe I will have more good news soon.  At least this is a much more upbeat post than my last one!

Maybe I'm the one...

I was thinking of the song Psycho by Puddle of Mudd and can't help but think of my latest conversation with the "insurance specialist" in the NC doctor's office.  I love the doctor and the fellows that I have spoken to and also every other person on staff that I have spoken to and/or met.... that is except for the insurance specialist!  For some reason it just feels like she has a strong dislike of me!  That is where the song comes in, feeling somewhat paranoid.  I have no idea why she would dislike me but she just is very short with me.  When I told her that I had talked to a few people that fought insurance companies and got the occipital nerve stimulator implanted, they got it through the appeal process, meaning I can't appeal anything until they submit a request, she said "Well I just don't believe that, these people must not have understood exactly what you are talking about" to which I calmly replied yes, we had extensive discussions and it is the same exact surgery, to which she replies she still doesn't believe it, like I am just making things up.  She then says "Well maybe you can just go to whatever doctor they went to" at which time I say that I would like my medical records so she promptly transfers my call to the medical records department.  The person there of course was very nice and helpful (go figure).   Oh well, starting over again is a little depressing but I have been waiting since July and she has done nothing.  She talked to a representative from my insurance carrier and faxed some medical studies about occipital nerve stimulation to her.  I spoke with the insurance rep who actually was much nicer than her who was confused as to why only research info was faxed to them.  They need the doctor to actually request coverage for my surgery before they can review and make a decision.  The insurance specialist at his office will not because she says it will be immediately denied.  I feel like this one employee is causing the doctor to lose money.  Maybe they will figure it out eventually.  At first I thought about calling and speaking with the office manager about it but then I just decided to forget it.  We chronic pain patients already are on thin ice with some folks thinking we are nuts already, like we are imagining our illnesses and they are "all in our heads".  I don't have the energy to talk to another person unless I have to.  I know that is sad but it is true.  I don't want to talk unless it is a person who is important to me I am talking to, as each word actually hurts my face and head to speak.  Anyway, enough whining from me today.  I am going to try to add a link to the YouTube video for that song.  Of course for you other headache sufferers you might want to turn the sound down like me! 

http://youtu.be/pDdeOncpD5E

Insurance sucks

Well I went for my appointment with pain management yesterday.  The PA I saw was great.  She was very nice and actually appreciated that I brought a printout describing my condition and a sheet with all the treatments I have already tried.  She wants to do a nerve conduction study for the nerves in my neck and also an MRI of my neck.  The insurance company requires preauthorization for MRI and they did not give it when the request was made.  They called the facility wanting to know how long I have been taking my pain medication.  What in the world does that have to do with whether or not I need an MRI done?  Now I have another thing to wait on, which is whether or not they will give authorization to do the MRI.  I wish I did not have to mess with this insurance company but it does beat paying cash for everything I guess, which there is no way I would be able to pay for all of these tests and doctor visits.  I just wish they would pay for things my physicians believe that I need without all of the crap we have to go through to do it.

Still waiting

Nothing much to update today but I felt like posting so here I am!  I am still awaiting insurance approval.  The insurance specialist from the dr in NC spoke with the representative for my group of insurance and she wants them to fax reports of studies that show how well the stimulator works and they will think about changing the policy supposedly.  I am trying to be optimistic but I just don't see that happening because 1 patient needs it.  I wanted them to just go ahead and submit a request for authorization but the insurance person basically refused stating it would immediately be turned down.  So what?  If there is nothing requested I cannot appeal a decision!!!  That is how I have heard most people that fought insurance got their surgery approved.  I am on a waiting list for a clinical trial but that isn't supposed to begin until next year.  I just feel as if I am at a standstill yet the pain has been progressively getting worse.  I scheduled an appointment with a pain management group and it was for this morning but they called stating that they would have to reschedule because the PA I was supposed to see is out sick today.  So now I have another week to wait on that.  Ugh!  I just can't seem to get any help at all.  Every day I go on about life and pretend to be normal when I have to go out into public but in reality feel like cowering in a dark quiet place 24/7, or else screaming!  I am hoping pain management will at least help me keep my sanity while I wait on possible surgery.  Nearly every night I curl up with my ice pack and tell my husband that I can't do this anymore, but in the morning I get up and start over again anyway.  I am determined to get better but honestly getting more and more tired from dealing with the 24/7 pain.  Hopefully relief isn't too far away.  I left my full time job as I couldn't handle working for those jerks anymore.  I already had some work that I did on my own anyway, just part time though.  It was nice at first until bills started rolling in!  I am starting a new  job though where I can choose my own hours, and I definitely feel like this has been the best choice I have made in a very long time.

My baby is 7 today

My little girl turns 7 years old today!  We are having her party tomorrow.  Normally this is such a wonderful happy time for me.  I love making my kids special character cakes and decorating for their party.  Unfortunately I am kind of dreading it because the thought of being around people talking and expecting me to talk, and kids being noisy has me wondering if I can make it through without going insane from pain.  On top of that last night I had terrible abdominal pain after taking my pain medication.  This is not the first time it has happened.  I have done research on this and I feel like it is a sphincter of Oddi spasm but of course I am not a doctor so cannot diagnose myself.  I am just afraid this chronic pain medication use might be doing something to my liver and pancreas.  Ugh, it has definitely turned into a love/hate relationship between me and the pain medication.  I just want to be off medication period.

Tough day

Ok, so I am feeling really sorry for myself today and needed to vent.  It has been a really, really bad pain day.  On top of that the insurance specialist from the doctor's office called and said that my insurance company would not do a precertification or predetermination for the surgery so we have no clue whether they would consider paying or not.  My husband called the customer service number and I eventually just got the phone myself to talk to the (rude) customer service rep.  I explained to her the situation and what the surgery was.  She said if it says in the medical policy that it is considered investigational (which it does on the website) then there is just no coverage.  Period.  So there is no hope???  Who knows.  The insurance specialist is gone for the day, doesn't work on Fridays, and Monday is a holiday.  So it will be at least Tuesday before I can possibly get in touch with her again.  I have to get the procedure codes she used when she contacted the insurance company before I call back and talk to the rep for the group policy. 

All of this has just made me really upset today.  I am sort of unsure why.  I knew it could possibly be a long, hard process to get the insurance company to pay for the surgery.  I guess it is just because everyone I talked to on the phone today just seemed to be so completely nonchalant about it.  Oh well, sucks for you doesn't it?  That is basically the vibe I got.  I guess if they had to live their day to day life feeling like a knife is stuck in their head they might be a little more sympathetic.  Most people hear the word headache and think of taking medication, lying down for a little while and then feeling all better.  Nope, not for me.  I actually daydream of going back to the point in my life when I had migraines.  I would give just about anything to be able to only have a headache even once a week.  This constant day and night pain more of the time severe than not is probably going to drive me insane.  It has been over 2 and 1/2 years now.  I honestly believe that if I did not have a family I would not be alive today.  Without people who loved and depended on me I just wouldn't deal with this pain anymore.  I try so hard every day to enjoy my life, I mean really, really hard.  I put on a smile and pretend to be perfectly fine every day.  Everyone says "I don't know how you do it."  I honestly don't either.  I guess the hope of one day being able to have the surgery that seems to be my last hope has been one thing keeping me going.  I can no longer enjoy reading a book to my daughter, dancing, singing, playing, exercising, long conversations, laughing a lot, going to the movies or a concert.  I'm sure there are many more things but in this pain filled haze my brain isn't working right today.