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.
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3 comments:
The bit in your post about having to go on with your life abnd pretend that all is normal felt as though I had written it myself. I have been suffering with HC for about 16 months now and feel as though I am barely holding it together. Mine is intractable to medicine, so I will need to try occipital nerve stimulator implant surgery. As I am in Britain, I have to go through the NHS (national health service) as no private insurance will cover the procedure. The process of gettting approval, though, is no less tedious and troublesome as it sounds for you. It will take a minimum of 12-15 months to get approval and may even take more than two years. It is tremendously frustrating. Even the medical professionals do not seem to understand that each day of delay matters when it means an additional day of pain. There is no choice, though, but to continue with life as best as you are able.
Good luck.
I can imagine you are tremendously frustrated. I hope that you can get help with pain management in the meantime and hear from the insurance company soon.
While it is nice to hear from someone else who suffers with my condition it also makes me sad that they are going through the same things I am too. I wish you luck on approval for the stim too. Keep me updated!
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