Have you ever felt your world was crashing in on you? No matter how hard you try, you constantly seem to end up on a dead end?
You find yourself starting to make decisions based on fear. But what if feelings of fear and stepping across a new frontier go hand in hand?
It has taken me awhile to write again, because we are crossing a new frontier.
I questioned myself often why would I write so publically, the intimate details of our life. Our struggles, pain, joy, and love. My mind tells me I should keep this all private. Every time I hit the publish button on my blog, I want to throw up. Crawl in a hole, curl up in a ball, and hide. Cry till my eyeballs have no more tears. It is very uncomfortable for me to do this. But one thing I have learned in life, is growth can only take place when you are really uncomfortable.
And the same answer that will not make logical sense comes to me. 2 ½ years ago, I woke in the middle of the night, with a voice speaking to me. “Sarah write.”
I made a promise to my family, myself, and most importantly God that I would not write out of anger, revenge, frustration, or pity. Instead complete trust. Faith. For only a mustard seed of faith can move a mountain. So when I don’t write, know that I’m in deep reflection and prayer with
the Creator of the universe.
What is Derek’s update?
This was the struggle. When I sat down to write, a whole lot of anger wanted to surface. How do I write the most frustrating and heartbreaking journey without great grief, anger and bitterness?
Because the beauty that unfolds during the tough times is what matters most. Forgiveness. Trust. Belief. My hope is that the time I pour into writing our journey, it sheds light for other patients and their advocates. Encourage others, that no matter what you face in life,
happiness is not a destination but a choice.
You are not alone.
This battle called life is not to be fought by you.
Let God fight on your behalf.
On the recent trip to Florida, I had the privilege to sit next to a woman on our flight who works for the State of Wisconsin Health Department. Our conversation was remarkable. A divine appointment indeed. She validated what I had been struggling with for the past four years. Americans think they have great insurance until they get sick. It’s something that we will all face and effect every single person.
It’s only a matter of time.
The system we have in place is taking advantage of the ill and suffering. Downright disturbing.
We live in America. The land of freedom. Shouldn’t we have the freedom to go to any doctor in the medical field within our country?
Shouldn’t the sick be treated with dignity and respect and come first in the line?
I’m witnessing first hand. This is not the case. When you become sick, you will be dictated what doctor you can see, who can help you. Face it. Doctors are human. They are not GOD. They make mistakes. Some are in it for the money. Others are in it because they felt a calling, to help others. What if your network of doctors in your area, just can’t figure out your illness? Or you don’t connect to your doctor? Perhaps their arrogance and selfishness comes first, not the patient.
Whatever is the case, this is the reality of our healthcare system. You do NOT have the freedom in the USA to go to the doctor of your choice. Instead you are dictated by the insurance companies who you can and cannot go to.
Here are two terms you need to understand.
Primary Physician. This is your family doctor, which the insurance world has dictated to become your advocate. All medical records are supposed to go to them. You cannot get into a specialist without a primary physician. If the specialist you need to see is not in your insurance network, this is the person that has to call your insurance company on your behalf and do what’s called a prior authorization. You cannot get into an appointment without approved prior authorization. If you are denied, you will have to pay 100% out of pocket if its not approved.
Prior authorization. In order to be seen by specialists in or out of your network, a request by your primary doctor has to be sent to the insurance company. A lot of paper work and time is involved in this. A panel of people in insurance companies who have no clue what a patient is going through, simply reads the reports of the doctors, and when necessary the primary will do a doctor to doctor insurance call. This means your primary and a doctor who works for the insurance industry speak and come to agreement that this patient needs to go out of network. If detailed information in a prior authorization is not sent, it’s like an automatic denial. And you have to start all over again.
Here’s how this system has failed my husband and
on top of it, the complications of Derek’s case has only grown.
We flew back to Wisconsin as soon as we knew we had a verbal positive VEMP test. Derek’s condition isn’t clear cut and anything that can possibly show these surgeons clues to help my sweet Derek is like hitting the jackpot lottery. This test pushed us over the edge that pointed to a condition called SSCD. A diagnosis. And now it was time to see what I could do to push through prior authorizations in the insurance world. Because these surgeries have to be covered. They are very expensive and this is why we all have insurance right?
Immediately I pursued our insurance company, a surgeon in Wisconsin who Derek was already a former patient of, and our primary physician. The paper work from Dr. Li was sent to these doctors. It seemed like for the first time in four years, I could breathe. We were on the right track. And I wasn’t alone in this fight anymore. The medical community believed me. Something is wrong with Derek.
And this is when I learned, not to get to comfortable,
Everything came crashing down.
We got the call, that the verbal POSTIVE VEMP test in Florida, wasn’t positive. It was inconclusive. We just lost our biggest lead in Derek’s diagnosis. Inconclusive doesn’t mean negative. However, it didn’t give any of us the warm and fuzzy feelings.
Next our primary physician, within our network, who knows very little of Derek’s case due to the complicated mess that it is, has to be our biggest advocate when it comes to fighting the insurance companies. Since I have flown Derek to doctors out of our network, and paid 100% out of pocket, there is a lapse of time for reports getting sent out. Because there is no open system in place that doctors can freely send information to one another. Since Dr. Li is out of network, our primary wouldn’t take anything he said to value. However, the Wisconsin specialist who intimately knows Derek’s case, even did one of Derek’s surgeries, immediately ordered more tests for Derek and valued what Dr. Li had said.
Now two very reputable surgeons were concerned for Derek. Wanting more tests.
Placing multiple calls, I spent hours, days, routinely checking with the insurance company, primary physician’s office and the Surgeon at the UW hospital, to confirm everything was going through on the insurance end.
I was told verbally that everything was sent in by the primary for prior authorization. The week of all these tests and appointments, on my routine check, I find out from our insurance company nothing was sent in by our primary.
Which meant I was going to lose the dates held for Derek.
And we would have to get back in line to get him into this surgeon.
So I continued to call the primary and this is what I was told.
That the primary doesn’t get paid for prior authorizations and the time put into this. That the specialists are the ones getting paid. So they should do it.
I begged and pleaded, that because our insurance had changed, this Wisconsin surgeon who Derek was already a patient of, was no longer in our network. The insurance company, Dean care and I checked if there was any other doctor who could help Derek in network. Through my research, there was no one. Dean told me the primary had to reach out the specialist. It was a conflict of interest if the surgeon reached out to the primary because the surgeon wasn’t in our network anymore.
Stupid I know, but again, I don’t make the rules.
Upon explaining the rules of engagement to the Primary’s staff, I was accused of being an unruly person by begging them to help my husband and to call in for prior authorization. Never did I swear, or call names, though I have to admit, I came close. Instead, I persistently called them and pleaded that without their help Derek wouldn’t receive help. The primary staff insisted that the surgeon should have to reach out to him. Not the other way around. And I continued to beg the primary to please reach out to the surgeon. I didn’t make up the rules and neither did the surgeon.
Just call him.
After almost two weeks from when I first called, the primary doctor finally called the specialist, because I relentlessly wouldn’t stop calling his office. The primary’s staff was rude to the surgeon’s staff. And only three days before the appointments, the primary finally sent the prior authorization. Urgent prior authorizations can take 5-7 business days.
The day of the tests and appointments, because the primary dragged his feet, I had to make the decision, whether to take Derek or not. The case was in “pending” status. Which meant it wasn’t approved yet. That means I risk paying for all this 100% out of pocket or reschedule everything and start all over.
Or take a leap of faith, and just take him anyway.
Watching him suffer for so long, enough is enough.
I took Derek anyway.
When we got the hospital I had to sign financial forms that we could be 100% responsible for all bill, if the prior authorization didn’t go through.
I signed the form.
Derek had the tests and we met with the doctor. Derek’s CT scan does show possible dehiscence, a possible hole on his right side.
Out of hundreds of images, there is only two slides that show a possible hole.
The surgeon said, that if it’s truly a hole, it should show up on more images. Next, an ECOG test that Derek took also came back negative.
If he has SSCD, we are hoping for something to come back positive.
This surgeon, who I really do like, has an amazing staff. With a fine tooth comb went through all of Derek’s medical records, and is struggling with this:
About 10 % of the population have thinning Semi Superior Canals. Many people it never effects. For some reason, they do not understand but in a small percentage of that 10% it creates debilitating symptoms. If Derek truly has SSCD, why did Derek respond so horribly after the first two surgeries four years with vertigo? Why did a rotary chair test come back abnormal 3 years ago on the left side that Derek has a balance disorder? This doesn’t make sense to him.
Yet Derek’s symptoms definitely match SSCD.
He said, he would be willing to do the SSCD surgery. But this is a huge surgery, and his greatest fear is if we are wrong, Derek could come out with horrific vertigo the rest of his life. If the problem is more from damage on the left side where the implant moved, the results of during the cranial surgery on the right side, could have could horrific consequences. Derek could never find balance again. Bluntly put, Derek would need a cane or walker to even get around and would be spinning uncontrollably.
This was heart breaking to say the least.
We need more tests. And Derek clearly has multiple things going on. His next step is he needs to be seen by neurologists. To rule things out so we can make a clearer educated decision before we do a cranial surgery.
All to quickly I realized the only way to get into a neurologists is through our primary physician. He will have to prior authorize everything. And it’s up to a 6 month wait to get into a neurologist.
To do this huge massive brain surgery, on a whim, with so much at stake, Derek HAS to see more specialists before we go ahead with these surgeries. We need to rule out damage the implant moving caused. And other vestibular issues.
Derek needs a primary doctor in network to stand with me and fight.
Just when I didn’t think things could get more complicated, they always can. The insurance company called me. Our primary never sent in any documentation to the insurance company to see the specialist that we saw on Thursday. Because of not going above and beyond, all those bills are now 100% out of our pocket. And on top of it, I have to go back to this primary to be my advocate to get into neurologists before we make the decision to ahead with this surgery.
I don’t think so.
I just fired this primary.
As for our former Primary Physician, trying to see where he is coming from is challenging. But he is trying to make a living and open a practice. Can I really blame him? To fight the insurance companies back for not getting paid, is more important to him. The bottom line is Derek won’t make him any money. Instead create a lot of work with no pay.
This is why we have gone through so many primary physicians.
A year ago, I tried a different one, and as soon as she walked into the exam room and looked at Derek’s case, her words were, “Why would you even bother coming here.” I begged her to help me order tests. And she refused. Never heard from her again.
I’m trying to understand that in the end they do need to get paid. I understand that. But the person that is suffering the most in all this complication, is the patient. In our case, my husband.
We are so close to figuring this out. At the same time, so far away.
What Derek needs is a true solid confident diagnosis. And the insurance company to allow us to get where we need to go. He needs a team working together.
Unfortunately Dr. Michelle Carrillo-Maasa, a primary physician from Florida, that has guided us from a far for the past three years, has no voice because she is not in our insurance network. She’s not about the money. She’s about the patient and doing what is right. She has restored my faith, that there are people in the medical community that are not just out for the love of money, but the love to help others.
My only choice, is to fight back. To appeal. Which means, I, the wife, have to stand up on behalf of Derek’s case and face the insurance companies. I’m no idiot to this for this has been my life the past four year.
It’s becoming very old.
But Derek is worth every moment spent.
The surgeon at the UW is putting together all of Derek’s records for me that he has, and mailing them to me. So I can make multiple copies and send them to Dr. Li in Florida and any other specialists willing to take a look at this complicated case. His staff is going above and beyond, even though they aren’t getting paid to do so, to help me try to find a neurologist.
Then it will be up to me to take this to the insurance company who is trying to assign a case worker to bypass the primary, and with Dr. Michelle’s guidance and help, stand up and FIGHT BACK.
The staff of the Surgeon, and representative at the insurance company all see the injustice that is taking place. Their hands are tied due to the rules of the game. They are doing whatever they possibly can. And believe me that something is wrong with Derek. I’m beyond grateful for the compassion and empathy we have seen in the medical community.
We have seen the best and we have seen the worst.
What we desperately need now is passionate, caring primary physician in network, who can help us find neurologists who succeed at problem solving and willing to take a look at Derek’s case. And if we wait for insurance to approve it could take months. If we get in with someone mediocre, we are wasting precious time.
The reality I’m facing is each test has to be prior authorized. Which means, there is much for me to do. Or pay for everything 100% out of pocket. At this point, I don’t have a choice. Derek needs to get into a neurologists ASAP. We need to get this figured out. He hasn’t been like for a few days, or weeks. But YEARS!
As for Derek, his symptoms are worsening. He’s miserable. When our 14 year old son Gavin told me last night before bed, “Mom I don’t really remember Dad before he got sick. You know, back when Dad could go a whole day and feel great.”
Of course I’m tired, angry, and frustrated. But when I look past all the junk, here is what I see.
I see a beautiful miracle unfolding. It is an honor for me to fight for husband and for future patients. And I will find joy and laughter even in the midst of this. Happiness is a choice. Not a destination.
The Lord put Dr. LI right in front of me in church before Christmas.
I believe that HE is blazing a trail for me.
I see a man who fights to get up everyday, get dressed, and make it as long as he can before he can take his symptoms no more. He smiles and finds joy even through the suffering.
If I make no head way with insurance this week, I will be forced to move to Florida, establish residency and a new insurance network. Work with Doctors who will help me prior authorize things.
Derek cannot wait much longer.
This is the world we live in.
Pray hard warriors. For heavenly wisdom. The seas to be parted. Greater reveal if Derek truly has SSCD, and if we should go ahead with these big surgeries. Pray for breakthrough on every level. Pray for a gifted neurologist to be sent to us. Pray for the insurance companies to pay for what they should be paying for.
“Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the LORD your God is with you wherever you go.” Joshua 1:9
Sarah Hein, the Pioneer