Wow technology has come a long way.
Sunday, December 4, 2011
Cool tracking device
Thursday, December 1, 2011
Final denial
We received yesterday a letter informing us, though the pain is indeed real, they are still going to deny the nerve stimulator due to lack of evidence and due to the determination that the treatment is considered experimental. The letter was thoughtful and personally written to reflect our personal situation, but still disappointing.
Our only option now is to go for an external appeal outside of our insurance company. Is this something we need a lawyer for. I really don't think my husband has the energy to fully present his cause and successfully argue the benefit. It just is not his personality. It really would be nice to know if this would work
Meanwhile, my husband is now using a tens unit on his neck to used for the neck pain. It helps some when on and pain fully returns when removed. However, that is expected.
Botox A for some reason failed to work fully this time. In the past he has had full headache relief with Botox A, so we are not sure why after Botox B not really working why the Botox A is following suite too. Headache is diminished, but easily fully returns with any activity. This is rather frustrating, since this has been our last of options.
Well nothing major more to report.
Our only option now is to go for an external appeal outside of our insurance company. Is this something we need a lawyer for. I really don't think my husband has the energy to fully present his cause and successfully argue the benefit. It just is not his personality. It really would be nice to know if this would work
Meanwhile, my husband is now using a tens unit on his neck to used for the neck pain. It helps some when on and pain fully returns when removed. However, that is expected.
Botox A for some reason failed to work fully this time. In the past he has had full headache relief with Botox A, so we are not sure why after Botox B not really working why the Botox A is following suite too. Headache is diminished, but easily fully returns with any activity. This is rather frustrating, since this has been our last of options.
Well nothing major more to report.
Sunday, November 20, 2011
update
We are still battling with insurance. This last appeal gave us the opportunity to meet with the appeal committee and present our case. We were told we had 15 minutes to make our case this last Friday After ward the decision would be made behind closed doors and we would be notified by mail of their decision.
There were 10 people in the room. Only 5 of them were to be voting members. They each introduced themselves and what department of the insurance company they represented. I found it interesting that the medical director, ( one of two, who made the decision on the last two appeals) was present, but not a voting member. Interesting also that both him and the nurse in the room were the only people to not give eye contact during the entire time that my husband spoke on his condition. That is hard to read into what that means, but none the less it was very obvious compared to the 8 others in the room who gave total and full attention.
I imagine we will get notified by Thanksgiving the decision. Since our (and most) insurance companies do not cover things they consider "experimental" or "not yet FDA approved" they hide behind that as the excuse to deny coverage. In reality, they don't care how much it is needed, it is simply denied. Even if we explain as in the first appeal, the items that would make us qualify due to their own written rules, we are still denied. First denial was based on "procedure was considered experimental, and based on the "new technology protocol." So when we appealed again outlining how we feel we meet each item in the "new technology protocol" the next denial letter simply put "your providers plan does not cover this procedure." But we are welcome to appeal again if we disagree. Our argument is that it is simply needed. There are no other options and we need this coverage to help my husband not be in pain every day.
So in reality we would love if they approve the device and the procedure, but the reality is they have an excuse to deny coverage and it would be miracle. We believe in miracles, so we hold out hope.
Our next option will be to go to arbitration, and this will be our last recourse.
On different but similar note. We saw a new neurologist. He ordered an "MRV" and an spinal tap. Guess what all normal. Which is good, but a quick fix would be nice. Interesting the DR did not order the MS lab work to be done on the spinal tap. The reason it would have been nice to have been ordered is to for sure rule it out. After all, my husband has deep white spots on his brain and those have been attributed to migraine, but MS patients have them too. Even though MS is "not genetic" both his mom and brother have it and both confirmed with a spinal tap. Since my husband has no other MS symptoms and headache has been argued as to whether it is a symptom or not, one would conclude that he is negative for MS. Fact though is that the medical field really does not understand headaches, nor do they understand MS very well. When we tell some Drs that both his mom and brother have MS, they tend to believe that it is a label diagnosis rather than an accurate diagnosis. Who are they to say that, when they can not figure out how to help my husband.
Not only did we see a new neurologist, we saw a different doctor who does nerve stimulation to seek for a second opinion and to see if he knew of other options. Of course, but doctors have no idea what to do to help. Of course the nerve stimulation doctor says we would benefit from the nerve stimulator, but doubts we can get the insurance company to pay.
Once doctors think it is hopeless to battle the insurance company, they leave you to battle on your own. They will not fight the insurance company, because that is who they work for since they are the ones who pay the bulk of medical cost. (forgetting the fact that we pay the insurance companies)
Speaking of insurance, sleep doctor prescribed a switch from ambient to lunesta, in order to help stop the wake ups in the middle of the night. Denied, must try a different drug first. Tried that drug, no improvement, so we got lunesta approved and well it doesn't work any better. Too bad, because literature says that is what it is best at doing. Went back to ambient.
Pain doctor, who does the botox recommended using pain patches. Denied also, insurance company requires the use and failure of morphine extended release. Really morphine. (I am scared of the opiates in the patch too), but I hear nightmare stories of morphine addictions. It is one thing to be in your 60's or 70's and be morphine addicted, but it is senseless to do this to someone in their 30's. Yet, the pain is real. He took the first 8 days of morphine and it helped reduce pain. Not gone completely, but reduced. Yet I am just not comfortable with this decision and all the future baggage it brings, so for now it is locked up. We need some answers from the doctor, before we can consider this a viable between botox option.
Lastly, Dr gave Botox A instead of Botox B, since the B version had little benefit at all. It has been two weeks and we are just now noticing that it is starting to work. Usually it starts working at 1 1/2 weeks and complete relief at around the 2 week mark. Goal is to get through Christmas, but even that will be close with our last trends with Botox A. However, we still believe in miracles and every day of it working is wonderful. Working a short time is better than not at all.
There were 10 people in the room. Only 5 of them were to be voting members. They each introduced themselves and what department of the insurance company they represented. I found it interesting that the medical director, ( one of two, who made the decision on the last two appeals) was present, but not a voting member. Interesting also that both him and the nurse in the room were the only people to not give eye contact during the entire time that my husband spoke on his condition. That is hard to read into what that means, but none the less it was very obvious compared to the 8 others in the room who gave total and full attention.
I imagine we will get notified by Thanksgiving the decision. Since our (and most) insurance companies do not cover things they consider "experimental" or "not yet FDA approved" they hide behind that as the excuse to deny coverage. In reality, they don't care how much it is needed, it is simply denied. Even if we explain as in the first appeal, the items that would make us qualify due to their own written rules, we are still denied. First denial was based on "procedure was considered experimental, and based on the "new technology protocol." So when we appealed again outlining how we feel we meet each item in the "new technology protocol" the next denial letter simply put "your providers plan does not cover this procedure." But we are welcome to appeal again if we disagree. Our argument is that it is simply needed. There are no other options and we need this coverage to help my husband not be in pain every day.
So in reality we would love if they approve the device and the procedure, but the reality is they have an excuse to deny coverage and it would be miracle. We believe in miracles, so we hold out hope.
Our next option will be to go to arbitration, and this will be our last recourse.
On different but similar note. We saw a new neurologist. He ordered an "MRV" and an spinal tap. Guess what all normal. Which is good, but a quick fix would be nice. Interesting the DR did not order the MS lab work to be done on the spinal tap. The reason it would have been nice to have been ordered is to for sure rule it out. After all, my husband has deep white spots on his brain and those have been attributed to migraine, but MS patients have them too. Even though MS is "not genetic" both his mom and brother have it and both confirmed with a spinal tap. Since my husband has no other MS symptoms and headache has been argued as to whether it is a symptom or not, one would conclude that he is negative for MS. Fact though is that the medical field really does not understand headaches, nor do they understand MS very well. When we tell some Drs that both his mom and brother have MS, they tend to believe that it is a label diagnosis rather than an accurate diagnosis. Who are they to say that, when they can not figure out how to help my husband.
Not only did we see a new neurologist, we saw a different doctor who does nerve stimulation to seek for a second opinion and to see if he knew of other options. Of course, but doctors have no idea what to do to help. Of course the nerve stimulation doctor says we would benefit from the nerve stimulator, but doubts we can get the insurance company to pay.
Once doctors think it is hopeless to battle the insurance company, they leave you to battle on your own. They will not fight the insurance company, because that is who they work for since they are the ones who pay the bulk of medical cost. (forgetting the fact that we pay the insurance companies)
Speaking of insurance, sleep doctor prescribed a switch from ambient to lunesta, in order to help stop the wake ups in the middle of the night. Denied, must try a different drug first. Tried that drug, no improvement, so we got lunesta approved and well it doesn't work any better. Too bad, because literature says that is what it is best at doing. Went back to ambient.
Pain doctor, who does the botox recommended using pain patches. Denied also, insurance company requires the use and failure of morphine extended release. Really morphine. (I am scared of the opiates in the patch too), but I hear nightmare stories of morphine addictions. It is one thing to be in your 60's or 70's and be morphine addicted, but it is senseless to do this to someone in their 30's. Yet, the pain is real. He took the first 8 days of morphine and it helped reduce pain. Not gone completely, but reduced. Yet I am just not comfortable with this decision and all the future baggage it brings, so for now it is locked up. We need some answers from the doctor, before we can consider this a viable between botox option.
Lastly, Dr gave Botox A instead of Botox B, since the B version had little benefit at all. It has been two weeks and we are just now noticing that it is starting to work. Usually it starts working at 1 1/2 weeks and complete relief at around the 2 week mark. Goal is to get through Christmas, but even that will be close with our last trends with Botox A. However, we still believe in miracles and every day of it working is wonderful. Working a short time is better than not at all.
Wednesday, October 12, 2011
Battling insurance for help
Last time my husband or I blogged was a while ago. I wish I could say that he is all good, but the last six months has been one big roller coaster ride.
Here is the summary:
So to sum it up. Waiting to try two new prescriptions, because our insurance company will not approve what his DR prescribes without jumping through all these hoops first.
Going to see two new doctors in hopes to find some kind of help somewhere. Someone somewhere has to have the right answer to help manage it. We are to the point now, where we have come to accept this is going to be part of our life for years to come. We hope to be wrong, but it just hasn't gone away on its own and now we only have doctors trying to manage the symptoms, not figure out the why. It is baffling to them all. They have done all they know to do and you can't fault them for that.
We have and have had great doctors, we don't blame them, but sometimes feel the insurance company stands in the way of quality care. Doctors don't get paid except for the visit, so all the calls to change prescriptions are often slow to come, because doctors are doing what gets them paid....seeing patients and hopefully help them. Doctors don't get paid to think about how to help you once you leave their office. Their plates are full and in a day they see so many that they often don't have the time to give a second thought to your case until you are scheduled to see them again. This is fine and good if what ails you is simple, but unexplained pain is complicated, because the cause is not exactly known. We are guessing the headaches are in result to multiple head injuries as a child and teenager, but in reality that is only the best guess. I also understand the insurance companies position, but trust me if they had a better idea of what to do, we would gladly do it.
At this point, we just need a new door to open. Something to make the days go on a little easier. Our five year old boy deserves to be able to play ball or ride his bike with his dad without it causing so much pain that dad is throwing up in the bushes. It should not be a normal question our kids ask, "Dad, are you throwing up again?" "Yes" "Oh, okay", as they continue playing, because this is a normal day in these little ones lives. Just a normal every day occurrence.
Here is the summary:
- Went to Neurosurgeon specializing in nerve stimulators. He diagnosed my husband with "occipital neuralgia. After reviewing his records, he said we have tried all viable avenues and should proceed with nerve stimulator. (Which we were already told this by the referring neurologist who told him there is nothing more she can do.)
- Our plan was to schedule this first procedure in May when the Botox was expected to wear off. One week after the appt. insurance denied coverage, but we were entitled to an appeal. Procedure deemed "experimental and therefore insurance does not cover experimental procedures."
- Botox wore off two weeks earlier than planned, effective for only 6 weeks, instead of the 2 to 2 1/2 months previously. DR will do Botox only every 3 months. In order to bridge gap, tried an occipital block. Worked perfectly all day, and then that night went from perfectly fine to uncontrolled nausea and pain in a matter of five minutes. Told to take zophran under tongue and phenergan by mouth to try to get it under control or go to the ER.
- Next week had some relief, so long as he did not try to do anything with any exertion (lifting, running, or sex). Just calm mild movements for moderate pain reductions. If he felt well enough to do something more, he would pay for it that day and the next.
- Did Botox a week early, to help get pain back in control. Again lasted only six weeks. I don't mean some relief, I mean total relief and then total pain. Botox A works better for him than anticipated for most patients and always has from the first time he got it. The only problem is, his body gets used to it quickly and he loses how long it works for him.
- Called referring neurologist for help with appeal. They submitted written request and medical records. Insurance denied again.
- Wrote first appeal, trying to bullet why it should be approved according to the insurance company's own policy. Denied again.
- Tried a different Botox variant (Botox B or also called Myobloc). Never got total relief as with Botox A, but there were days pain was milder. Also not able to do any type of activity or he will get really bad for 2 or 3 days. Still has very bad days even when doing nothing.
- Called the issuance company to see what evidence we could provide that would help them reconsider and approve this procedure so that my husband could go through day without severe pain and vomiting multiple times through out the day. They told him there is nothing we can provide. Experimental is just that and there is nothing we can do to change their mind. When asked then why I am I told that I need to file an appeal if there is nothing we can do to change your decision, they back pedaled and said if you have new information, you can submit it.
- Met with DR doing the Botox, she wants to try Botox B again in November. Then the next time we can see if Botox A is more effective. So we may have another rough 3 months ahead of us, OR..... let's hope this time is works better and LONGER. Please oh please, be longer and better. Must keep hope. It could be different and any relief is better than no relief. Meanwhile, she has been the DR who has required that he not be on any pain med since he began seeing her 15 months ago. Other doctor allowed max of twice a week. This doctor felt that was too much still. She now will allow him to try something for the pain since pain is unmanaged for long periods of time. (Like that is new, it is only managed when on Botox or Radio Frequency Ablasion, never once on any drug or other treatment.) Since my husband is knocked out by percoset and unable to drive or work or do really anything. The pain comes back as the medicine wears off, the doctor decided to prescribe pain patches, that release a small amount of pain medicine, all day everyday. Hopefully this will give him function and drivability. We will see, but meanwhile it it requires insurance pre-authorization and the doctor has not done that yet.
- Got a referral to a new neurologist to see if he has any suggestions (since last neurologist was out of ideas). Will see him on Halloween.
- Europe gains approval to use occipital nerve stimulation, after a new study was released in Europe.
- Called the three different nerve stimulator companies, asking for help. Case studies for appeal, studies in the US that we can participate in. One told us they only work with the doctors offices and to have our DR contact them. Another said, there was probably nothing we could do to change our insurance company's decision. The third one told us to change our doctor to the one that uses their device and they (the DR and the sales rep will try to help with our appeal, by submitting it a different way. He said he wished we hadn't already wasted two appeals by having to do it ourself without the help that they hope to provide. He did say he can't promise anything and called us back later with a name of a DR willing to take on our case.
- Called DR's office that the sales rep recommended and was told to get referral from DR and submit medical records and then we will be contacted if Doctor is willing to see us. HMMM, okay, the circle we have to go in to get any help. Done both of those things this week, now just waiting to see what happens.
- Went to sleep specialist for annual visit. Waking up in pain throughout the night. Ambien only helps to get to sleep and last only 4 hours. Phenergan for nausea works better than Ambien. Ambien extended release is not covered by insurance. Was prescribed Lunesta at this visit. Insurance denied it too, without first trying Sonata. DR has been out of office this week and so hopefully will soon fax new prescription to pharmacy.
So to sum it up. Waiting to try two new prescriptions, because our insurance company will not approve what his DR prescribes without jumping through all these hoops first.
Going to see two new doctors in hopes to find some kind of help somewhere. Someone somewhere has to have the right answer to help manage it. We are to the point now, where we have come to accept this is going to be part of our life for years to come. We hope to be wrong, but it just hasn't gone away on its own and now we only have doctors trying to manage the symptoms, not figure out the why. It is baffling to them all. They have done all they know to do and you can't fault them for that.
We have and have had great doctors, we don't blame them, but sometimes feel the insurance company stands in the way of quality care. Doctors don't get paid except for the visit, so all the calls to change prescriptions are often slow to come, because doctors are doing what gets them paid....seeing patients and hopefully help them. Doctors don't get paid to think about how to help you once you leave their office. Their plates are full and in a day they see so many that they often don't have the time to give a second thought to your case until you are scheduled to see them again. This is fine and good if what ails you is simple, but unexplained pain is complicated, because the cause is not exactly known. We are guessing the headaches are in result to multiple head injuries as a child and teenager, but in reality that is only the best guess. I also understand the insurance companies position, but trust me if they had a better idea of what to do, we would gladly do it.
At this point, we just need a new door to open. Something to make the days go on a little easier. Our five year old boy deserves to be able to play ball or ride his bike with his dad without it causing so much pain that dad is throwing up in the bushes. It should not be a normal question our kids ask, "Dad, are you throwing up again?" "Yes" "Oh, okay", as they continue playing, because this is a normal day in these little ones lives. Just a normal every day occurrence.
Thursday, March 31, 2011
First Road block and Second Chances
Whew this was a busy week and mixed in with all of the craziness we experienced the first road block to having the stimulator placed. Well you know what they say about the best laid plans ... They went to a complete halt when the insurance company denied the procedure.
Fortunately we are not out of hope, last year my head ache specialist recommended I obtain the help of a nurse advocate through my insurance company. Who knew there was such a person, but, there is and while at the time other than establishing a relationship we did not need the nurse's help. Well, when I got the rejection letter one of the first calls I made was to my nurse advocate. The nurse helped me understand the appeals process and encouraged me to work closely with the my referring doctor to submit it. In addition in the processes of reviewing my circumstances she discovered I had been pre-approved for as many Botox treatments as my Dr. feels I need through Feb 2012. One of the reasons Botox treatments have been an issue is the length of time for the pre-approval (now taken care of) and scheduling the Dr. required usually about six weeks of misery before the treatment is done and kicks in. So at least one hurdle has been knocked down and should shorten the time I spend in headache misery.
So moral of the story expect rough seas and get a nurse advocate at the very least they can talk through options with you. -SG
Fortunately we are not out of hope, last year my head ache specialist recommended I obtain the help of a nurse advocate through my insurance company. Who knew there was such a person, but, there is and while at the time other than establishing a relationship we did not need the nurse's help. Well, when I got the rejection letter one of the first calls I made was to my nurse advocate. The nurse helped me understand the appeals process and encouraged me to work closely with the my referring doctor to submit it. In addition in the processes of reviewing my circumstances she discovered I had been pre-approved for as many Botox treatments as my Dr. feels I need through Feb 2012. One of the reasons Botox treatments have been an issue is the length of time for the pre-approval (now taken care of) and scheduling the Dr. required usually about six weeks of misery before the treatment is done and kicks in. So at least one hurdle has been knocked down and should shorten the time I spend in headache misery.
So moral of the story expect rough seas and get a nurse advocate at the very least they can talk through options with you. -SG
Wednesday, March 23, 2011
A New Hope
Yesterday I had an appointment at OHSU with a Dr. who specializes in Occipital Nerve Stimulation. Going to the appointment my wife and I were afraid the Dr. would say I was not a candidate for such a device, we were wrong. Much to my surprise we learned that I was a candidate for a nerve stimulator and as we have been feeling and fearing it is pretty much my last hope.
You may ask why pursue this when the Botox works well? The answer is simple Botox lasts for me around 2- 1/2 months followed by six weeks of complete agony if not heck. For instance the last five days prior to the Botox treatments I was taking no pain meds but two anti nausea meds, muscle relaxer, and for good measure blood pressure medication (the last two did not do any thing at all) and still I vomited 16 times (once 5 different episodes in one day). So when the Botox works life is good but when it wheres off the headaches are completely unmanageable.
So that leaves us with the occipital nerve stimulator. I still have lots of questions about it, but feel at-least there is hope in front of us to improve the overall quality of life and not just 60% of the year with the other 40% in a complete meltdown. But for now it is a waiting game as we can not pursue the stimulator until the Botox wheres off. If past history is an indicator of future results my prediction is sometime between May 8th - May 15th. I never thought I would anxiously await the return of my personal beast and in reality I am not, I just have hope for the future.
I will update the blog as I find answers to my questions and have results from our latest adventure. -SG
You may ask why pursue this when the Botox works well? The answer is simple Botox lasts for me around 2- 1/2 months followed by six weeks of complete agony if not heck. For instance the last five days prior to the Botox treatments I was taking no pain meds but two anti nausea meds, muscle relaxer, and for good measure blood pressure medication (the last two did not do any thing at all) and still I vomited 16 times (once 5 different episodes in one day). So when the Botox works life is good but when it wheres off the headaches are completely unmanageable.
So that leaves us with the occipital nerve stimulator. I still have lots of questions about it, but feel at-least there is hope in front of us to improve the overall quality of life and not just 60% of the year with the other 40% in a complete meltdown. But for now it is a waiting game as we can not pursue the stimulator until the Botox wheres off. If past history is an indicator of future results my prediction is sometime between May 8th - May 15th. I never thought I would anxiously await the return of my personal beast and in reality I am not, I just have hope for the future.
I will update the blog as I find answers to my questions and have results from our latest adventure. -SG
Sunday, February 20, 2011
10:30 am and not going well
The last two weeks have been steadily getting worse for my husband. The hard part about headaches for him is not only the the persistent vice-like pain in his head and the pain in his left eye, but the nausea that comes with it. He is holding less and less food down. In the past, it was common for him to vomit daily, but now 2-4 times a day is his new norm. He went to his Headache neurologist on Thursday. After waiting two hours to see her, she pretty much said there is nothing more she can do. She did put him back on zofran, so he can take it at work to hopefully reduce some of the nausea. He will now use pheragan at home and the zofran at work. She changed his muscle relaxer back to one that did not work before. Hmmm, REALLY? Not that any of them really work any way. They only help a little or knock him out. She also gave him vicodin, which the botox/ pain management dr doesn't want him to take due to increased chance of dependency and rebound headaches. Additionally, it doesn't make the headache go away, just lowers the pain until it wears off and then he is back to full grown migraine.
The funny thing is she is his medicine prescribing doctor and has given up. So now we need to figure out who can manage his meds. One good thing she did was give him the name of the dr who does nerve stimulation implants. Now, can we get the insurance to pay for it? We will see on that one.
Today even on nausea meds, he is now thrown up 3 times in the 2 1/2 hours he has been awake. Lovely day already. Good news is the Botox appointment is Thursday morning. Bad news is that it is supposed to snow Wednesday night and Thursday morning and we live over an our away. If we have to reschedule it could be another couple of weeks to get in. That would be mean more vomiting and I am not sure he can handle that.
Pray for the storm to not come in until Thursday night, please.
The funny thing is she is his medicine prescribing doctor and has given up. So now we need to figure out who can manage his meds. One good thing she did was give him the name of the dr who does nerve stimulation implants. Now, can we get the insurance to pay for it? We will see on that one.
Today even on nausea meds, he is now thrown up 3 times in the 2 1/2 hours he has been awake. Lovely day already. Good news is the Botox appointment is Thursday morning. Bad news is that it is supposed to snow Wednesday night and Thursday morning and we live over an our away. If we have to reschedule it could be another couple of weeks to get in. That would be mean more vomiting and I am not sure he can handle that.
Pray for the storm to not come in until Thursday night, please.
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