I am a patient (not a medical professional!) who has been dealing with hemicrania continua since 2009. This causes constant head and facial pain on one side of the head 24/7. I am looking into occipital nerve stimulation as a treatment as I have tried everything else.
Friday, September 30, 2011
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.
Friday, September 9, 2011
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.
Thursday, September 1, 2011
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.
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.
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