So the insurance denied the surgery for a reason I don't yet know; I haven't received a damn letter from them, and when I spoke to my case manager, her system showed only the Botox denial letter. I don't know what the reason is, so I can't really go forward from there.
But then, like always in my life, we're still stuck, but for an entirely new reason. Inga, Dr. Ducic's secretary / scheduler, phoned on Monday to say that everything was in order on their end, and that she'd put a call into the surgery center to make an appointment for me as early as possible. She said that we should have a date ASAP and that we'd know either that afternoon or first thing tomorrow. Tuesday came and went. Wednesday came and went. Thursday came and went. Nothing. So we phoned back in on Friday afternoon to ask what the hold-up is. Inga told us that, essentially, the surgery center was being a douche face and hadn't phoned her back, even after she'd phoned them a few new times. It doesn't make me feel better that the surgery center hadn't phoned back to schedule various procedures for the other 100-odd patients of Dr. Ducic waiting for a date. The surgery didn't even have the guts to return a single phone call for any procedure and any patient. Inga was so apologetic, and I felt terrible for phoning in ALL THE TIME to pester her where my case was. She simply couldn't do anything, and it's not her fault, and I could hear that she was as frustrated as the doctor's patients - we're all losing our patience (haha). There is simply nothing she or I could do about it, but I suspect she's going to raise some serious hell.
All I wanted was a small piece of good news for the holiday, and to start off the year with positive thinking. On Friday and Saturday, I was manically angry, the kind that my medications couldn't control because it came out of sync with my cycle. Now I've simply become despondent. This constant bad news and putting things aside is excruciating.
This is yet another christmas where I'm sick. It's always something - chicken pox, migraines, depressive cycles. It's the third christmas in a row that I've been too ill to enjoy the holiday. I mean, I really don't enjoy it anymore, anyway; it only makes me terribly sad to think about how excited and thrilled it made me as a child / early teenager, and how that feeling is completely gone from my entire life. I don't get that same kind of excited-ness, and I wish I did.
Tuesday, December 24, 2013
Saturday, December 14, 2013
Not been writing much
But that's really because I don't have much to say. I still haven't received the denial letter from the insurance company, so we can't really be sure why exactly they've denied coverage for the surgery. I strongly suspect it's because a) they can't prove medical necessity or b) they think the surgery is still 'experimental' and current medical research doesn't back up the surgery. I essentially said 'fuck that' to option b) and set out on an epic quest to find all of the medical research I possibly could on nerve decompression surgeries and occipital neuralgia. From chatting with people through an ON forum, I've seen that the most common reason for denial b) states that there isn't enough clinical research and clinical trials with long-term follow-ups to suggest that the surgery is a viable, long-term option for treating my condition. Like hell there isn't. I currently have a three-page letter explaining my condition, the doctor, the procedure, and medical research, backed up with about 40 purely medical articles - including two-, five-, and ten-year followups on clinical trials. To piss of the insurance company even more, I've printed out all the abstracts (and some full-text articles where I can) for them to read over. I plan on sending all this overnight to the company and require them to sign for it, so I know they got my giant research of doom. If nothing else, I've gathered the research other patients may need to fight their companies. From the information provided by the surgeon, over 90% of his patients' insurance policies do pay for the surgery, which also lends credence to the fact that this isn't considered experimental any more. I know for a fact that my company has covered this procedure with this surgeon before. Needless to say, I'm fuckin' ready for a fight. Well, not really; I don't have the energy to fight, but I did the research and have lots of awesome people on my side.
The only real decision we need to make now involves the review process. We can submit our claim to an internal approval group (which is actually made up of doctors and not generic, bureaucrat, paper-pusher behind a desk), or go directly without passing GO to an external review board of doctors. We can re-re-appeal to the external board if we need to after seeking internal approval, but we aren't too sure which will give us the result they mean. If all else fails, my surgeon does go to extremes to cut down the costs of the procedure to make the price more 'reasonable,' but that amount is still way, way out of our price range and will require us to either ask our parents for help or take out a loan - both of which we'd like to avoid. It's just the longer we sit and wait to make a decision, the longer the appeals process, so the longer it could be before surgery. I'm not sure if the surgeon will let us have the surgery, pay the co-pay, and then continue the battle with the insurance, but he's such a great guy that I imagine he will.
In other news, I had botox injections done last Monday in a last-ditch effort to manage the pain until surgery, as I'm really kind of scared of the long-term effects of the steroid-based nerve block injections with the current issues they're already causing. Between nerve medications and some super pain killers, I am usually able to lessen the pain enough that I can walk to the kitchen and back before wanting to die, instead of turning over and wanting to die. But four weeks without the injections has been, to say the least, unbearable. The neuro said it usually takes about a week for the botox to 'paralyze' down to the level of nerves; it's been five days and I haven't noticed any change in my pain levels.
However, I did wake up at about 3 on Wednesday morning, stumbled over to wake Pat up and barely managed to get out the words "hospital. now. go." I felt like someone had taken an axe blade to my head and split my brain along the corpus callosum. My brain was exploding out of my skull. It hurt so bad that I wasn't even coherent enough to speak to the doctors or nurses until after the first Dilaudid injections. I was so ill that it even took super-duper anti-nausea medications to make me stop being ill long enough to even go through the CT scans. When they wanted to perform a spinal tap, I only shrieked in fear; luckily, Pat was there to explain that a tap was the *reason* for all this bloody shit in the first place. So they gave me even more Dilaudid and anti-barfs, let me rest, and sent me home. Plus, the pain killers made me walk like a penguin, so that was fun.
I must give highest, highest praise to the ER at the Kernersville Medical Center. I was registered and triaged within fifteen minutes of arriving, and the on-call doctor was in the room within twenty minutes of arriving, and I was out of the CT machine within 45 minutes. Admittedly, it was 4AM when we arrived so it wasn't exactly busy, but that's really impressive. I've been to the ER before with the same complaint - three days after the initial spinal tap - and hadn't been triaged or registered after over FOUR FUCKING HOURS. Everyone at this ER was super nice, they kept me warm, they patted my back when I was ill, and acted like they really wanted to help me get better. I won't talk about the huge black bruise in my elbow from them drawing blood for me; I feel that's far payment.
TL;DR - Same old shit. Hospital impressive. Same old shit.
The only real decision we need to make now involves the review process. We can submit our claim to an internal approval group (which is actually made up of doctors and not generic, bureaucrat, paper-pusher behind a desk), or go directly without passing GO to an external review board of doctors. We can re-re-appeal to the external board if we need to after seeking internal approval, but we aren't too sure which will give us the result they mean. If all else fails, my surgeon does go to extremes to cut down the costs of the procedure to make the price more 'reasonable,' but that amount is still way, way out of our price range and will require us to either ask our parents for help or take out a loan - both of which we'd like to avoid. It's just the longer we sit and wait to make a decision, the longer the appeals process, so the longer it could be before surgery. I'm not sure if the surgeon will let us have the surgery, pay the co-pay, and then continue the battle with the insurance, but he's such a great guy that I imagine he will.
In other news, I had botox injections done last Monday in a last-ditch effort to manage the pain until surgery, as I'm really kind of scared of the long-term effects of the steroid-based nerve block injections with the current issues they're already causing. Between nerve medications and some super pain killers, I am usually able to lessen the pain enough that I can walk to the kitchen and back before wanting to die, instead of turning over and wanting to die. But four weeks without the injections has been, to say the least, unbearable. The neuro said it usually takes about a week for the botox to 'paralyze' down to the level of nerves; it's been five days and I haven't noticed any change in my pain levels.
However, I did wake up at about 3 on Wednesday morning, stumbled over to wake Pat up and barely managed to get out the words "hospital. now. go." I felt like someone had taken an axe blade to my head and split my brain along the corpus callosum. My brain was exploding out of my skull. It hurt so bad that I wasn't even coherent enough to speak to the doctors or nurses until after the first Dilaudid injections. I was so ill that it even took super-duper anti-nausea medications to make me stop being ill long enough to even go through the CT scans. When they wanted to perform a spinal tap, I only shrieked in fear; luckily, Pat was there to explain that a tap was the *reason* for all this bloody shit in the first place. So they gave me even more Dilaudid and anti-barfs, let me rest, and sent me home. Plus, the pain killers made me walk like a penguin, so that was fun.
I must give highest, highest praise to the ER at the Kernersville Medical Center. I was registered and triaged within fifteen minutes of arriving, and the on-call doctor was in the room within twenty minutes of arriving, and I was out of the CT machine within 45 minutes. Admittedly, it was 4AM when we arrived so it wasn't exactly busy, but that's really impressive. I've been to the ER before with the same complaint - three days after the initial spinal tap - and hadn't been triaged or registered after over FOUR FUCKING HOURS. Everyone at this ER was super nice, they kept me warm, they patted my back when I was ill, and acted like they really wanted to help me get better. I won't talk about the huge black bruise in my elbow from them drawing blood for me; I feel that's far payment.
TL;DR - Same old shit. Hospital impressive. Same old shit.
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