Today is a special day.Today is the day I get to share with all of you, the real deal. And how completely fitting it is to share this on March 24th.
25 years ago today, is the day Derek Hein walked into my life. Though its not our wedding anniversary, we always celebrate 3 dates. The date we met, our first date and our wedding. To some this may be over kill. But not to me. Because Derek changed my life in every way possible.
He is the real deal.
And yesterday, the real deal was exposed to Derek and I on his bizarre and complicated illness, that has been a four year journey.
Quite frankly, its taking me some time to once again process all this.
Who would have thought this trail we are blazing would lead us to….
Los Angeles, California-Ronald Reagan Hospital, UCLA. And yet, here we are.
On the way to Derek’s first appointment a couple of days ago, my phone rang. It’s was the medical insurance company case worker who had been assigned to us.
“Sarah, we are calling to inform you that the appointment you wanted to take Derek in California has been denied. I was surprised to see you were trying to go California. You didn’t call to inform me. We only received a prior authorization from your new primary doctor and I didn’t hear from you.”
I said back, “That’s correct. I did NOT call you back. My job isn’t prior authorizations. That’s our primary physician. Our new doctor is amazing and DID HER JOB. And I did my job. Miraculously I got Derek into a top physician in an unbelievable time frame. Only a week out. So I jumped. In fact, I’m in California as we speak walking into the hospital right now.”
Dead silence from the insurance lady.
“Wait. You are in California right now?”
“Yes we are.” I said.
“You know this will be 100% out of pocket right? It won’t be covered.” She said.
Laughing, I said, “Why of course I knew the insurance wasn’t going to pay. They don’t pay for anything that a patient REALLY needs. They will pay for senseless drugs that only make matters worse. This is how it has been for four years. Why would California be any different?”
Then I said, “Let me ask you something. What would you do if this was your husband suffering for four years? Wait for a denial when you know that’s what is going to happen anyway? Listen, I did everything you said. And the new primary did what she was supposed to do. My husband is sick. I put him on a plane, and we are about to walk into the hospital right now.I’m not waiting for the insurance any more. Enough is enough.”
I knew she understood. Her voice softened, and she said back, “Sarah, I would do the exact same thing.”
Hanging up, I found myself literally standing in front of the hospital with Derek.
Walking in, I knew one thing. A new trail was being blazed.
Sitting in the waiting room, the ‘hurry up and wait’ syndrome started to take over. Soaking in my new environment, I noticed everything in this waiting room, had to do with the brain and tumors. Something was resonating with me, questioning me, why are we in this wing of the clinic?
To pass time I decided to google this doctor we were about to meet. Good old google. It’s become a dear friend me. And that’s when it hit me.
Dr. Yang was a neuro surgeon. I knew this. I did. But for whatever reason, like a 2×4 just whacked my head, I realized that I should have gotten Derek into the OTHER doctor. Dr. Gopen. The neuro otolaryngologist. The guy were going to see was a brain surgeon.
Sweat bored out of me. Immediately I tried calling Dr. Michelle. But I had no reception in the hospital.
Just when I realized my mistake, a nurse called us back. Fear, panic set off through out me.
The next ½ hour, as we waited in the exam room, sweat KEPT pouring out of me. Should we get up and walk out? Wanting to scream and say I think we are seeing the wrong doctor, which meant a lot of money just went out the door and more importantly, more time wasted. I kept trying to convince myself…. this doctor WAS on the link from DR. OZ. So, I prayed.
“Please GOD, Please let this be the right doctor.”
When Dr. Yang, walked in, all i can say is the atmosphere of the room changed. The guy had more energy than me with 5 energy green teas. First thing he asked Derek was what was his worst symptom. And within two minutes of this man asking Derek the bizarre questions that no doctor has asked Derek: Can you hear your heart beat? Can you hear your neck move? Can you hear your voice amplified? Is sound is amplified?
The questions continued.
The very man I stalked on google from the link the Kohl’s cashier gave me, looked us straight in the eye and said incredibly energetic and excitedly:
“Derek, before I walked in here, I looked at your scan and this is what I wrote down.”
He turned his paper for us to see. In large letters was:
Then he pulled up Derek’s CT scan and said.
“Clear as day, you have a dehiscence. No question You have a HOLE in your skull. Actually you have it on both sides.”
He took his pen, and by the tip of the pen, pointed to a TINY hole in the bone. Between the large black hole and the yellow line is a small hole.
This incredibly small hole has completely changed my husbands life.
Through tears I said,
“We were just panicked that you were the wrong doctor.”
He looked at us, laughed and said, “Oh no. You are in the right place.” Then he asked us, “How did you find me me?”
Shaking my head, I said.
“You won’t believe it.
I then shared the crazy circus act of a story.
After four years of traveling all over for Derek to find a solution, this past December, we sold our home, moved in with some dear friends, so we could be flexible to travel to wherever we needed to go. Our first stop was Florida to see Dr. Michelle Carrillo- Massa. A doctor who has relentlessly stood by Derek’s side. On the eve of leaving for Florida, a cashier at Kohl’s department store told us about a link and thought this is what Derek had. She sent the link. It was YOU on Dr. Oz. The description of the symptoms matched Derek to a T. While in Florida, I researched with Dr. Michelle. Combing through Derek’s medical records, and found an old CT that had a diagnosis I had never seen before. No one mentioned this to us.
It said: Superior Semicircular Canal Dehiscence.
We went to church to pray over this new finding. At church, a well respected neuro otolaryngologist just HAPPENED to be sitting two rows from us in a huge mega church. Dr. Michelle approached this doctor:
Dr. Li from Jupiter, Florida.
We showed him what I had found in Derek’s medical records.
Dr. Li looked me in the eyes and said, “If this is what your husband has, it can be fixed.”
Dr. Li was willing to see Derek. We ordered another CT scan. Went back to Wisconsin, fought the insurance companies more. And weeks later, got the CT scan you are looking at. Insurance sent us back to the Wisconsin doctor who dismissed this condition the first time. And he disagreed with Dr. Li. Again saying that this is not what is causing the problems and its too risky for Derek to have the surgeries. We were devastated. We had two very different opinions. Not to mention all the doctors from the past four years who never once mentioned this condition.
Only Dr. Li, who we met in church, thought Derek had this. He opened up the door for us. And we wanted to walk in. Wanting another opinion.
Your name just kept popping into my head. And I just knew I needed to bring Derek here, but didn’t fully understand why. Just that I needed to bring him.
And before you walked in today, I thought I made a mistake.
“You made no mistake.” A smiling Dr. Yang said.
I looked at him and said, “I prayed for you for four years. For someone to help my husband.”
Then he said, “Let me tell you MY story.”
“I didn’t study this condition SSCD. 7 years ago, a friend of mine named Dr. Gopen, called me to assist in a brain lift for this condition. Together, we became best friends. And I was intrigued with this bizarre condition. Some people are really good at the crab walk. I’m really good at reading CT scans and finding this little hole. It’s just the gift I have been given. And I totally get the whole Jesus, mega church thing. Because it’s all Jesus that led us to the success in we have seen in this surgery. We did 48 surgeries last year alone. People come from around the world now to see us.
How we got on Dr. Oz was Jesus.
And I’m glad four years ago, they didn’t know this was wrong with your husband. Because we have perfected this surgery remarkably in the past four years.
So, let’s call my best friend Dr. Gopen.”
Right then and there, he called Dr. Gopen. And the two surgeons discussed Derek’s case right in front of us. I think Dr. Yang was just as excited as we were to have a diagnosis.
( We have been to a LOT of DOCTORS. They just DON”T do this. Call each other and communicate like this IN FRONT OF YOU)
Dr. Yang said, “This really nice couple needs to get into you. You are going to love them. They have been through enough. Traveled here from Wisconsin. Can you see them tomorrow?”
I couldn’t believe it. Dr. Gopen was willing to see us over his lunch break the next day.
Dr. Yang then said he would willing to do Derek’s surgery.
That’s when we said, that we had to first figure out insurance. We didn’t have any currently for California.
“Wait, you don’t have insurance?”
We explained that we do have insurance, but they aren’t willing to pay across state line. Let alone across the country.
“Are you cash paying?” We nodded our heads. And just like that he abruptly walked out. When he came back he said,”We just took you out of the system.
This one is on me.”
I couldn’t believe it.
U N B E L I E V A B L E
All I can say, is I about collapsed to the ground:
Thanking the good Lord.
The next day, we met the famous Dr. Gopen. Compassionate, and incredibly intelligent, during an hour consultation, he broke the news we have waited for four years.
In his opinion, Derek was completely misdiagnosed. He doesn’t have otosclerosis. He has SSCD. He again, showed us the scan. And then walked through why Derek never got better.
Not going to lie. Though in my heart, I knew all this, it was very hard to swallow. Because he made it very clear, that Derek’s SSCD IS A CLEAR CUT CASE. He was surprised we had CT scans proving it, and no one believed us, except Dr. Li.
He then addressed Derek’s damage on the left side for the previous surgeries. And the problem of loss balance. And this is where it gets really complicated. It’s bad enough to have this rare condition. But add a destroyed balance system on the LEFT side due to misdiagnosis, and damage from a botched surgery. Add to that,the largest hole is on the RIGHT side which causes balance issues in itself, Derek is one COMPLEX case. NO wonder he has been so miserable.
But it’s what Dr. Gopen said next that hit me.
“Derek big risks can lead to big results. Just remember that.”
Dr. Gopen talked like a pioneer. We are trail blazers. It’s what we do. And we have two doctors willing to blaze this trail with us.
What’s the next step?
We are flying home because there was a test that no one has mentioned for years to us. A caloric test. ( I probably killed the spelling) We need to send the test back to Dr. Gopen. If Derek has any balance left on his LEFT side, we are going to take the risk and do surgery on the RIGHT side.
And if the balance is completely destroyed, we may start on the LEFT. However, the reality is, we have to get the holes covered up.
We need to jump and take a huge risk.
Dr. Gopen explained, that Derek could come out of surgery having to go through all the therapy again to re learn and find balance again. There is a chance he could never find balance again. Or he may only be dizzy for a little while.
Or a MIRACLE could happen. He could wake up B E T T E R.
To top it off, Derek has it on both sides. So he need this done on both sides.
Dr. Gopen said, “You are going to have get insurance approved. I will help you with any paperwork you need for insurance, attorneys, you name it.These are not cheap surgeries.”
My sweet Derek said, “I tried to work like this,in the past four years, and I just can’t do it anymore. My head has chaotic noise all day long from everyday life. At night when it’s quiet, my inside eternal noises take over. It’s never quiet in my head.”
He looked at Derek and said,
“You have holes in your skull that are giving you horrible disabling symptoms. You shouldn’t be working.”
The goal is to get Derek approved by insurance and to come back to California to have these surgeries. As soon as possible. Which they may have some openings in May but if we can’t get insurance to pay their portion, it will be more than likely not till July. These doctors are so sought after. How we got into them so fast was a miracle in itself.
Dr. Gopen with Derek.
Sitting in his office, it was so much to absorb.
A lot actually.
However, our GOD is a bigger GOD
-than All of this.
I can’t make up this circus act of an incredible unfolding miracle.
As my prayer warriors have encouraged me:
God didn’t bring you this far, to not see you ALL the way through.
We must refuse and rebuke any fear and not allow it to set in.
Blaming must be replaced with forgiving.
Letting go any frustrations.
Because this is what my life has taught me.
Anger, blaming and frustration cannot coexist with forgiveness that leads to healing.
It’s time to STAND. Not just holding hands, but arms locked together, in bold determination. Holding our ground, in 100% believe of complete healing for Derek, with no more complications. This is what I encourage you to all pray for.
We are so grateful for all the wonderful network of doctors around the country and people we have met along this journey. We have felt EVERY prayer. It’s all we continued to ask for.
Most importantly, if you don’t believe, we pray that Derek’s story leads
you… to believe.
Today we fly to Chicago. I will attend a work conference and roll up my sleeves and get back to work. Watch out insurance companies. Because I’m coming back. And I’m not stopping till this job is done right.
The covered wagon is literally heading out west.
Blazing a trail, like I dreamed of as a child.
Sarah Hein, the Pioneer.