After four long years, of watching Derek struggle just to make it through the day, it was time to JUMP. December 14th marked the FOUR YEAR anniversary of dealing with all this. The day Derek went into a minor surgery for hearing loss and woke up to a very different world.
His life has never been the same. Chasing after one theory to another, in search for his miracle led to some relief, and mostly dead ends. I knew this past summer that Derek wasn’t improving, in fact, I was seeing him decline before my very eyes. It was time to ultimately let go and let God be. We made the bold decision to sell our home in Wisconsin and travel to wherever this journey leads us in great hope to reveal what is wrong with Derek.
Dedicating my full attention now to this, I have been in constant reflection and research. I made a promise to my husband, that I will not stop looking until we have a diagnosis and a cure. I made a promise to God, to surrender to HIM. Even if that meant not having a clue of what was to come next. Literally handing the control of our lives over to our Maker. Something I should have done a long time ago.
Since we made this bold decision, we have had a front row seat to personally witnessing miracle after miracle. And have been reminded of the countless miracles along this journey. Each one I have written down for they kept us going on the darkest of days.
Our first offer on our house fell through. Only to receive a quick offer 24 hours later with a closing date of less than a month. The evening we got the offer we were on our way to visit with some lifelong friends of ours that we had not seen in a long time.
When they asked us what was new, we looked at each other and said, “Well, we think we just sold our house.”
The next big question they asked was, “Where are you going to live?” Derek and I looked at each other and said, “We have absolutely no idea.” We then shared our next step with them.
How we were about to embark on the journey of our lives, pioneering a new trail to figure out what was wrong with the Derek.
Deep down, both Derek and I knew we needed a home base for our children. This was happening so fast, we had no idea what that would look like yet.
The next thing out of their mouths was, “Come live with us!” Reluctant at first, only because Derek and I have always fended for ourselves it didn’t seem right. But within the next few days, we knew the offer on our house was going to happen. Had we not been out for dinner with them, and shared our situation, we would have never asked to live with them. God knows us intimately. He knew we wouldn’t ask. So he positioned us where it couldn’t be avoided.
We sold our home to a wonderful couple on December 7th.
Taking only necessities, we moved into the basement of our friends Rich and Ann’s home. December 8th, Derek, Gavin and I boarded a plane.
First stop: Jupiter, Florida.
Living out of suitcases instantly became old. And we have just begun. If you can picture your life doing a 180 degree turn, that is our life right now. While I sit back and watch people enjoy the hustle and bustle of the holidays, I felt cheated, even jealous. Of all times in the year, why did all this take place at Christmas time? We were supposed to have moved months ago. Not, at the holiday season. This seemed somehow more unfair. At times, almost cruel.
Why Florida? Dr. Michelle Massa Carrillo.
Our dear friend, who we now call family, has restored faith in us and the medical system. There are doctors, who despite politics, rules and regulations, still put the patient first even when they don’t have all the answers. Most importantly she prays with them. I met Dr. Michelle through a group of unbelievable women I work with. Brooke, Gilda, Janelle, Rhonda and Beth. These women formed a prayer warrior group around all of our families. Relentlessly praying for my sweet Derek and for one another. When we had exhausted all medical help in the Midwest, Dr. Michelle took over Derek’s case and became his primary doctor this past year. Even though she lives in Florida.
For the past 2 weeks, we have attempted IV treatments to boost Derek’s immune system. Blood work from Germany revealed that Derek has Lyme disease. One day I will share how we got the bloodwork to Germany. That is another amazing and FUNNY story, I intend to write.
It made sense to see if we went about this more aggressively, would any relief followed? Lyme disease is no joke. No cure and not recognized in the U.S as a debilitating disease. During this process, Dr. Michelle had a front row seat to assess Derek.
We were both in agreement, that there were specific symptoms Derek has that still didn’t make any sense. They didn’t fit the Lyme disease mold. Whatever was the root cause of the problem, woke up the Lyme disease. His body was on overload. But his immune system was strong. I also found out that I have Lyme disease, and yet have no symptoms. I too have a very strong immune system, thanks to being on a healthy lifestyle through Shaklee for over 20 years. Derek’s blood work, besides Lyme disease is incredibly healthy.
One thing remained evident, something else was wrong. But what? What was the ROOT cause of all this? We have been treating his Lyme for months now. Yet the main symptoms of horrible 24/7 pressure in his head, significant sound sensitivity, off balance feeling all the time has been nothing short but completely debilitating, and absolutely no change.
Here are some examples of Derek’s bizarre and strange symptoms. Driving in cars, he can HEAR the tires on the road. The rubber meeting the road is majorly amplified to the point it makes the pressure in his head build so much it feels like it’s going to explode. 24/7 he can hear a loud whooshing sound in his head. A steady beat. As if it’s on a mega phone.
What on earth is he hearing? His heart beat. He can actually hear his heart beating all the time. The more active he becomes, or the more noise he is around, the louder the beat is amplified. This is a domino effect that leads to more pressure building in his head.
You know the feeling of pressure you get when you fly? Or dive deep in water? Derek has that pressure ALL THE TIME. In activity or noise, it will increase to a point of no return for him. Many times he will say, “Can’t you hear that Sarah?”
Helplessly, I reply, “No, I can’t Derek.”
Certain sounds, vibrations, the wind, waves, waterfalls, the voices of children, the list goes on and on, have become wicked to Derek. Sending this poor guy through the roof. Into an almost full out panic attack of symptoms. Dizziness sets in, and if he doesn’t remove himself from the situation, a spinning sensation will set in.
And yet, the poor guy is almost deaf in one ear and hard of hearing in the other ear. His balance is thrown off and he fights inside himself to walk normal. When sound, certain vibrations, or increased activity occur, his eyes feel like they don’t work together. The way he explains it to me is that it’s like his eyes are in slow motion, not in sync with each other. Making him want to just shut his eyes because they become so heavy with fatigue.
For four years, he has lived like this. Never a break. The pressure only relieves for about 10 seconds when he does what I call a snorkel blow. He pinches his nose, and blows out through his nose. The pressure leaves for a few seconds and then fills back up immediately. The only thing he can do is lay down in a quiet environment shutting the world of chaos out from him. And he has to lay or sit where the back of his head is resting on something. For some reason, his symptoms calm down.
I have prayed for four years relentlessly for a revealing from God. To show me what is wrong with Derek. Open up my eyes to see what I’m not seeing. My ears to hear what I’m missing. And if there is one thing I have learned, is that God shows up in the most unbelievable places and unexpected ways. I’m learning to be more observant. To listen. Not ignore even the most bizarre things. What I’m about to tell you, is an unbelievable story.
The day before we left Wisconsin to Florida, a longtime friend of mine named Laurie, was working at Kohl’s department store, and checked us out. Randomly she said to me, “Sarah, I saw this episode on Dr. Oz. maybe it’s what Derek has. I will send you the link. Watch it.”
This woman has no medical background, and I have hardly seen her for years, let alone does she have any real idea of Derek’s symptoms. She saw something ‘rare on Dr. Oz that had to do with the ear.’ Naturally she thought of Derek.
I have had many people send me information regarding different conditions and solutions over the years to try to diagnose the mystery condition of Derek. Always leading to a dead end. Regardless of who sends me something I always look at it. Always. Because you just never know. And it was always sent to me out of love for Derek.
The morning we left Wisconsin, my friend sent me the video clip from a Dr. Oz. Watching this video stirred something in my soul.
The next several nights, I woke up in the middle of the night, thinking of this video. The condition was rare, but so many of the symptoms matched Derek’s. This woman who had this condition, had been to several doctors around the country, who all dismissed her condition.
Why was the name of this condition waking me up in the middle of every night? Sleepless night, after sleepless night, I got up, and studied the condition on the internet. There were a couple of words I had heard before.
I had to research this. Sitting in our hotel room with a fine tooth comb, reading each and every test Derek had gone through in his online medical records, I found a CT scan. When I read the cover sheet to his scan, I about passed out. Right before me, this is what I saw:
Diagnosis: Superior Semicircular Canal Dehiscence of Both Ears
Dated: Sept 2nd, 2015
The exact same condition on the link from Dr. Oz was noted on Derek’s CT scan 15 months ago.
Wait. How did he have a diagnosis on a CT scan and I not realize it? Thinking back to this test, 15 months ago, we had a local Integrative Doctor who had become our advocate. I was so relieved at the time to have a local doctor reviewing everything for me. All tests now went to her, and she personally talked with the specialist at the UW Madison hospital over the results to this CT scan. When I received the call from her, she assured me that this was not something that was causing all these symptoms and that Derek could not be operated on again. He had too many surgeries on his ear. The surgeon didn’t want to go back and do any more surgeries on Derek.
She made it clear that this wasn’t the problem, and DISMISSED this condition. There was nothing that could be done. Never saying that the CT scan diagnosed him with this condition. Instead, their recommendation was to send him to a migraine pain management program, even mentioning that Derek was depressed, and should seek some psychiatric evaluation. The surgeon didn’t even want to see Derek again. There was nothing he could do for him. A washing of the hands so to speak. We were dropped.
I remember telling this integrative doctor, “It’s not pain, he has PRESSURE and horrific sound sensitivity. When the pressure builds to a point of no return, he will go into a full blown migraine. But why does he have pressure all the time in his head? Why the sound sensitivity? Of course he’s down, but that’s not the cause. I want to know what’s causing this!”
When she told me I was an ‘over enthusiastic’ wife, it was time to find a new advocate Doctor for Derek.
Thinking back on this situation, I realized the mistake I made. I never really looked into this condition. And more importantly, I didn’t get a second opinion. Just took it for face value.
I’m fully aware that you cannot diagnose a condition from watching a Dr. Oz segment that was sent to you from a cashier at Kohl’s department store. But I had a medical record now right before me. One I had never seen in Derek’s file that said a diagnosis. And a link describing the EXACT SAME CONDITION.
So I did what any wife would do. I googled.
For hours, I read up on this condition. And the more I learned, there was absolutely no doubt in my mind, we needed to explore this more. Sending the very picture text you see from my computer to Dr. Michelle, she was floored. Together we researched.
What is this condition? It’s bizarre and yet makes complete and perfect sense. Rare, and newly diagnosed in the past 15 years. Which makes it go undetected. It’s the thinning of the circular bone in the ear, creating a hole or dehiscence. You naturally have two holes, this ‘hole’ creates a third. Sound escapes in this third hole. Creating depilating symptoms. All the symptoms listed, are exactly what Derek has. Often this is misdiagnosed with a Stapedectomy surgery. That was exactly what Derek had in the past. Three failed Stapedectomy surgeries.
From the sound sensitivity, pressure, dizziness, amplified noise and vibration, to the nystagmus of his eyes. The description of this condition described Derek to a T.
What if from the very beginning of all this, Derek’s hearing loss in both ears was misdiagnosed?
I wanted to beat myself up that I didn’t get another opinion. How did I miss this? But life isn’t met to be traveled backwards, and I have no time to waste. GOD opened my eyes and ears up. In the most bizarre way. Through an old friend I saw at Kohl’s, good ole Dr. OZ, google, a CT scan that completely was dismissed, and a passionate Doctor who has literally welcomed my family into her own home. Talk about a random circus act.
So now what?
As wonderful as this news is, we are still left with no doctor to be able to help Derek. Due to Derek’s THREE FAILED Stapedotomy surgeries, no doctor in the Midwest wanted to touch him. They didn’t even refer us out.
I want another opinion.
Until I’m proven wrong, we have a CT scan with this diagnosis. I sent this news out to a few trusted friends and relatives to help us research. We came up with a list of a few doctors around the country that specialize in this condition. Derek needs an experienced leading otolaryngologist. A doctor who specializes in Otology and Neurotology, and this specific condition. Superior Semicircular Canal Dehiscence.
The more Dr. Michelle and I learned, the more everything made sense. At the same time the more overwhelming it became. If Derek truly has this, it will not get better until he has the repair done to the bone. And according to what I’m reading in his medical chart, Derek has this in BOTH EARS.
There was one doctor in Jupiter Florida that Dr. Michelle had been trying to reach out to this past week. She had never met him personally, but had referred other patients to him, because she had heard amazing things about this doctor. In fact, this whole past year, she had mentioned this doctor to me. His name was written down in my notes as another avenue to look at before I even knew any of this. When we went to his website, ironically he specialized in this very condition.
Deep down, we both knew he needed to have a Doctor in this field overlooking him. For this is where all the problems started.
Dr. Michelle was on this. Having already left a message with this possible Doctor, she wanted to do a doctor to doctor phone call with him over Derek’s case.
Since it was our last schedule day in Florida, and we were to fly home the next day to be with our daughters, granddaughter and family for Christmas, I began to feel a wave of panic. Another dead end.
Reality set in, which triggered, FEAR!
Specialists take MONTHS to get into. Doctors who specialized in this condition, are literally across the country from me, and every single one was out of our insurance network. How on earth was I going to convince anyone to look at this scan? To see if this diagnosis was real, and if this was the problem, do the surgeries to correct it?
I’m no idiot anymore to the medical world. After four years of this, I have learned the exhausted fight that it takes, when you don’t fit the mold. What if this all led to another dead end? Fear of the great uncertainty that lay ahead began choking me. I would have to bulldog my way in, putting my foot in every door, just to have Derek be seen, again. Details stink.
On our last night in Florida, Dr. Michelle promised me, that she would request Derek’s Ct Scan from Wisconsin, and was going to personally take it to this specialists office and talk with him face to face.
She then said to me, “Let’s go to church and pray over this.”
That idea, brought peace to me. And yet, Derek’s symptoms had flared up again so bad, he needed me to drive him back to the hotel we had been staying at. Round trip it was almost an hour from Michelle. Debating if I should go to church or not, I felt guilty leaving Derek because he was going to have to pack his head in ice again. It’s the only thing he does when the pressure migraine sets in.
But the calling to go to church and pray for him, won out. Getting him situated, I drove back to Dr. Michelle, and we took Gavin, her son Sebastian who is 4, and her nephew Topher who is 7 with us.
Dr. Michelle’s church was huge. Thousands attend there. When we walked in, there so many people. My eyes were puffy from having been crying the whole way back to Dr. Michelle’s. When I’m alone, the tears sometimes just flow. I didn’t really want to be seen by anyone. Any make up I had on was gone, and I looked a mess.
As we entered into the church, Dr. Michelle excitedly said, “Let’s sit up front!”
I am NOT a front row gal. I’m what you call a ‘back row kind of person.’ Especially looking like an absolute disaster, But Dr. Michelle insisted.
“The front is where all the action takes place.” She said. Action was the last thing I wanted. Instead, a hole sounded more comforting. I just wanted to crawl into a hole, curl up and sleep. I didn’t know what she meant by this, but too tired, and in deep thought, we searched for seats to sit in this gigantic church.
Finally finding 5 seats in a row, only because a couple of kind people moved over to make room, we were seated just a four rows from the front. Barely having sat down, trying to just breathe, I looked over and Dr. Michelle, was acting as if she was having a spastic excitable seizure next me.
“Sarah! Look! No way! Look who is here!” Looking over at Michelle, my first thought was she was seeing someone famous in her church.
I said, “Who’s here?” Confused, why she was freaking out next to me, she looked me in the eye and said, “The Doctor I want to talk about Derek’s case with, I think is sitting right there.”
As she pointed him out, there was a man literally two rows in front of us.
No way. Couldn’t be. There is no way that could possibly be THE DOCTOR.
“Michelle, there is no way that is him.” I said.
The church service began, and Dr. Michelle, googled this doctor on her phone, pulled up his picture, zoomed in and the two of us stared at the uncanny resemblance.
Within a few minutes, the church was doing a ‘welcome to each other.’ Everyone stood up, and my bold friend got up, climbed past people out of our row, walked up to his row, extended her hand out to him past several people and asked him if he was ‘THE DOCTOR’.
“Why, yes, I am.” He said back.
I could tell by the look on her face, it was him. Michelle introduced herself and told him she wanted to talk with him after the service.
As she sat back down next to me, the two of us were like little girls on Christmas morning. The biggest gift had just been given to us. Tears of JOY flowed.
The ENTIRE church service, besides the amazing message of finding true PEACE in this chaotic season of Christmas, I felt like the pastor was speaking right to me.
I couldn’t deny anymore, all the doors that had been opened in the past ten days. Even if this man couldn’t help Derek, this was a sign to me. God was revealing.
Dr. Michelle, had NO idea this man went to her church or was even a Christian. She had never even met him before. This church was so huge, how were we placed two rows behind him? They have several services a weekend. How did we end up at the same service even. If the people in our row hadn’t moved down, we wouldn’t have been sitting where we were. Michelle wouldn’t have seen him. How did she even recognize him? My mind started rewinding the last ten days. The friend at Kohl’s, a link, waking up in the middle of the night with this condition on the tip of my tongue, a test result I had never seen, Dr. OZ, Google, Dr. Michelle, and now THIS?
If you don’t believe, maybe it’s time you do. Because if this was EVER the parting of the RED SEA, I just found myself standing on dry ground.
The sermon was on Jesus being our Counselor. Too much of this was divinely happening. I wanted to record as much as I could. Grabbing a pen, I took notes on the sermon.
This is what I wrote.
We all have a super natural COUNSELOR to guide us in life. To be reminded that none of us need to figure out our problems. HE already HAD everything figured out and was guiding us.
The definition of WORRY was ‘choke or strangled’. Worry will choke your faith. Hearing it put this way, made me realize that to worry about the outcome was going to choke off the most important gifts we had been given. Faith. Hope. Love.
When the pastor said, “Jesus is OUR WARRIOR. With HIM all things are possible!” Matthew 19:26 I lost it in tears of thanksgiving.
Peace does not mean absence of conflict. It means the presence of Christ.
The service ended. Dr. Michelle had a game plan all laid out. She wanted me to go to the front of the church with the boys and pray for Derek. She was going to go and talk with this doctor.
When she approached him, I heard her ask, “How would you like to be a part of a miracle?” And she began to advocate on Derek’s behalf, telling this Doctor of Derek’s journey.
Listening to her advice, I took the boys and went to the front of the church. Several people were standing at the front of this large church waiting to pray with someone. I randomly selected a woman and man. Told them briefly about Derek’s situation, and they prayed over us. When we were done, I said to them, “Derek’s doctor is here and she is talking to the Doctor we were hoping to discuss Derek’s case with. It’s like a miracle the very man we wanted to get him to was sitting two rows from us in church.”
They asked me to point out Dr. Michelle, and the doctor she was talking too.
When I pointed them out, they looked at me in complete amazement and said, “That’s the doctor? We know him, he’s a dear friend of ours!”
Out of all the people I could have chosen to pray with, I prayed with people who knew this doctor personally.
This wasn’t random anymore. This was DIVINE INTERVENTION.
It was when Dr. Michelle motioned to me to come over and meet him, a flood of emotions poured into me. Tears flowed. I didn’t shake his hand. This man got a big ole Wisconsin bear hug from some crazy blonde middle aged woman he had never laid eyes on.
Dr. Michelle had on her phone, the picture text of the cover to Derek’s CT scan that had the diagnosis. He took one look at the picture, looked me in the eye and said, “I want to see his CT scan. If he has this, it can be fixed.” I’m doing one of these surgeries on Thursday.”
He then went onto say, this condition goes often misdiagnosed resulting in Stapedotomy surgeries. He shared a story of a patient that had come into office and told him, “If you can’t fix me, I’m going to commit suicide.”
This poor man had the same condition as Derek. The symptoms were so horrific with NO RELIEF, this patient was contemplating suicide.
This Doctor was helping that patient. He genuinely understood the symptoms Derek was dealing with.
It was then, that I looked at my son’s face. The look on Gavin’s face, was beyond priceless. To see our son, and little Topher witnessing all this was a miracle in itself.
The head pastor and his wife seeing all the commotion, came over and prayed more with us. There are no words to describe any of this, except God’s presence was amongst us all, which brought PEACE.
There are moments in life that are etched into your soul. Imprinted. This is one of those rare moments. The little crowd that had gathered, was with a doubt, a selected random group of people, united for the first time. For one reason. One purpose. Finding Derek’s miracle. All under the roof, of the house of GOD. It was as if each person was handpicked by God himself. God being God, had picked the most perfect time of the year for all this to happen. Christmas.
As we pulled out of the church parking lot, Dr. Michelle and I were awe. The three young boys in the back were silenced.
It was when little 7 year old Topher finally spoke up and said to everyone,
“This is a Christmas Miracle.” I knew he was right.
I can’t deny anymore that God is holding all of us. Just as HE is our Wonderful Counselor, He is YOURS too.
If the diagnosis is wrong, well, then it’s one more thing to check off our list, and we will not stop till God reveals this to us. But IF this is what is wrong with Derek, restoration of his life is right around the corner.
I’m choosing to BELIEVE! Refusing NOT to worry about what is yet to come. Finances, surgeries, no diagnosis. Because if anything, this all taught me, nothing is random. EVERYTHING happens for a reason.
We flew back home to Wisconsin. Drove to the UW hospital, got Derek’s CT scan, and overnighted it to Dr. Michelle. Because if you follow the system in place, it could take 10 days to 2 weeks.
Yesterday, I received the call from Dr. Michelle. These two amazing doctors are meeting together in person to look over Derek’s scan and case this coming Monday, Dec 26th 1:20 pm Eastern Time.
What normally takes months, and add on top of it, the busiest time of the year, God just personally expedited!
Pray with us, as we wait for this God led Doctor to review Derek’s CT scan. Pray boldly for the REVEAL of Derek’s miracle.
We can’t see what tomorrow holds, but we know the ONE who holds tomorrow.
I honestly hesitated to share all this. Because what if this is another dead end. After a few days of soaking everything in, I realized if I didn’t share this story, no one would know of HIS GLORY.
Regardless of the outcome, the more that know, the more that can pray. All I ask is this, if you have read this, please put Monday Dec 26th in your calendar 1:20 pm eastern time. And if you know someone going through a difficult time, send this to them. Where there is Faith, there is always HOPE.
Together, let’s flood the heavens with prayers for a revealing.
This is what it looks like in the middle of a miracle!
(Lobby of our hotel in Florida. Derek hasn’t lost his sense of humor!
Noticed the t-shirt. The Adventure Awaits!)
Merry Christmas everyone.
JUST BELIEVE, Sarah Hein the Pioneer