Happy birthday to me

Well today was my birthday.  I won't be telling you my age although I will say that I can't say I am 29 anymore now that my oldest child is 17 (besides both kids now are saying Mom, how many years have you been 29 now).  Oh well.  I have such a wonderful family and friends that have tried really hard to make my birthday special.  I really do feel loved and I am trying to remember to be thankful for the great things I do have in my life like my family and friends instead of focusing on the pain.  I am afraid the struggle with chronic pain has led to a depression problem honestly.  The pain has just touched every aspect of my life and I am sick of it.  I want my life back.  I used to have fun.  I used to be a fun mom, fun wife, fun friend, fun everything.  Now everyone has to be quiet, lights can't be too bright, etc.  I decided to quit waiting on doctors to return my calls anymore.  I decided to call the Migraine Treatment Center back and I did.  I asked a ton of questions and actually the person I talked to was very nice and tried to answer all of my questions.  When she did not know the answer she was honest and said she would have to find out and would let me know.  Anyway, my point is I decided to take a more active role in my healthcare now instead of sitting back and waiting.  I have always been waiting for someone to call me back and I am just tired of it.  I want to get better and get back to having an enjoyable life.  So I am crossing my fingers and hoping that diving in will be the right choice.  I had to fax a copy of my insurance card and they are checking it out.  They did get an approval with my insurance company for another patient there for occipital nerve stimulator implant so I am very impressed now.  I think I gave myself the best present I ever have today, a chance at being healthy and happy again.

You Tube video of patient with ONS

I found this video of a patient with an ONS that needed revision and had to fight insurance to get her revision surgery and finally got the denial reversed through her doctor who sent a 45 page letter that reversed the denial.  I could not remember how to embed the video so I guess you will just have to click on the link and go watch it on youtube.

http://youtu.be/WpqQ71VxjWI

Insurance description of HC

Hemicrania continua, also a vascular headache, cause moderate pain with occasional severe pain on only one side of the head. At least one of the following symptoms must also occur; conjunctival injection and/or lacrimation, nasal congestion and/or rhinorrhea, or ptosis and/or miosis. Headache occurs daily and is continuous with no pain free periods. Hemicrania continua occur mainly in woman, and its true prevalence is not known. Indomethacin usually provides rapid relief of symptoms. Other NSAIDs, including ibuprofen, celecoxib, and naproxen, can provide some relief from symptoms. Amitriptyline and other tricyclic antidepressants are effective in some patients.

Ha! OCCASIONAL severe pain?!?!?

They reviewed the policy for ONS again last month and still say they will not cover it.

Seems like it would actually be cheaper for me as my pain med is $650 a month and all that does is help me get out of bed and be semi-productive during the day.  By the way, none of those meds have ever helped me (except for the indomethacin of course which caused severe GI damage).

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.

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.

New Doctor

Well I got to meet the doctor in NC.  He is awesome!  He even talked about how there is about a 100% chance of needing revision because of lead migration and he tries to secure the leads very, very well.  He is really nice and wants to do the surgery but says my biggest problem will be getting the insurance company to pay.  He is submitting for preauthorization for a trial implant so we are going from there.  I am pretty sure I will have to appeal.  I am trying to stay hopeful though!  Everyone there was very friendly and nice.  I really like the doctor and staff.  I actually talked to a fellow there and she answered questions I thought about after the doctor had left the room.  She was very helpful and knowledgeable also.  I will have to have some hair shaved off but I don't really care.  Heck I would shave my whole head if it meant relief from this pain!