If you read the blog ‘THE UNFOLDING MIRACLE’ you are anxiously waiting for this miraculous appointment. If you didn’t read that blog. Stop. Go read it. You have too. Because I cannot make this up.
After four plus long years of doors being slammed in our faces, traveling the country to figure out Derek’s horrible symptoms, we finally have a door open.
This is the good news.
The not so good news is this is unfortunately very complicated.I’m going to do the very best I can to describe this. And I will be as accurate as I can. This was a lot to absorb.
At the doctor’s appointment, as I filled out Derek’s paper work, answering all the typical health history information, I have to be honest. I checked ‘No’ to almost everything. Derek is incredibly healthy. Actually remarkably healthy considering . And yet he has debilitating symptoms. It was a harsh reminder to me of how none of this seems to make sense.
After great anticipation,
Derek finally met the Doctor two determined women had met in church 7 weeks earlier. Meeting this humbled man, was emotional to say the least. Its not so much the doctor that was amazing. He is the reminder of WHO brought him to us.
In fact on Derek’s paper work, when it asked, ‘Who can we thank you for this referral?’
I wrote…. G O D!
This gracious man examined Derek. Taking his time, being very thorough, not to miss anything, poured his concentration on this complicated puzzle. Piecing Derek’s story together. One piece at a time. Throughout the exam he did things no one had ever done. Asked questions no one had ever asked. I am crying as I write this. Because looking back, I felt like we had come home.
Superior Semicircular Canal Dehiscence. It’s the the thinning of the superior semicircular bone in the ear. Creating a third hole in the ear when there should only be two. Usually the bone doesn’t thicken correctly in infancy. Trauma can also set this condition off.And later in life, the bone thins and problems surface. A hidden masked complicated problem is born. The symptoms become a great mimicker, often resulting in misdiagnosis.
Here’s where it gets really complicated. Derek’s CT scan shows no holes or dehiscence. Just marginal thinning. It’s why all the other doctors didn’t diagnose him with this condition. They couldn’t see an actual hole.
To complicate this more, is Derek has this thinning on BOTH SIDES. Marginal thinning on left and right side. Right side being worse.
Add in Derek’s three failed stapedectomy surgeries on the left side, we could also be dealing with permanent damage. All this forms the perfect combination for an eye of a storm. A hot mess.
The first stapedectomy prosthesis implant moved, and the theory is a blood clot moved the implant. Which is completely rare and unheard of. His second surgery, a revision, where they put a new prosthesis in, was another failed surgery. His symptoms didn’t get better, and neither did his hearing. In fact,his hearing is worse now than before surgery. Unfortunately the first surgery resulted in damaging the vestibule system in the ear. This system controls balance. You have two systems. One on the left and one of the right. Derek’s right side should have kicked in over time, to over compensate, and never did. This has always been the real mystery. Why? Why hasn’t he been able to overcome this?
The next big question is why did the original implant not give him better hearing in fact worse hearing? He was originally diagnosed with Otosclerosis.
If this is what he had, why didn’t the stapedectomy work and give him better hearing. Instead, his hearing was worse after the surgery.
Why does Derek still have more hearing than he should with no stapes bone and no implant in if he indeed has Otosclerosis?
Was Derek misdiagnosed from the beginning? SSCD was the culprit all along?
During Derek’s exam, his symptom of horrible pressure, which increases with noise, physical activity, straining, lifting, and any movement at all is very evident. Add in sound sensitivity where he can hear his heart beat constantly, and hear his joints in his neck whenever he moves his head up and down. Not a one time crack. He can hear every movement of popping and cracking. Constantly. Balance disorder. Pressure induced migraines. Extreme fatigue. Eyes feel in slow motion, as if they don’t work together. There is no doubt, his symptoms are spot on of the condition SSCD.
So the big question is how do you fix this when its still so unclear?
If Derek never had any other surgeries, you wouldn’t be dealing with the possibility of this is caused by damaged from the surgeries and the trauma that occurred during one of them.
The cause COULD BE damage from all the surgeries. The only way to know that is to shut off his system in the left ear. Making him completely deaf, on the left side.
However, if you shut off the system on the left, and its NOT the real problem, instead the right side is the problem because he has a pinprick hole in his bone from SSCD that we cannot detect on the CT scan, he would have NO balance system at all. This would be devastating. Derek would have no ability to find balance. Clearly not an option.
Its like a game of Russian roulette.Since we cannot see the holes in the CT scan, it makes this incredibly difficult to diagnosis.
The Doctor came up with a possible solution but of course it’s risky. Surgery, which would be exploratory on the right side to repair the thinning bone. This is no easy surgery. In fact, its considered brain surgery. Because of where this bone is located, they actually have to go in through the skull behind the ear, lift the brain up to repair the thinning bone. We are talking massive surgery.
Then we would wait. To see if the symptoms all leave. If not, we would then do another brain surgery on the left side. Exact same surgery and repair the left side.
If neither of these work, the next step would be to go in and shut off his left side where the damage took place. Because the right side is now fixed. And we make him deaf on his left side.
And there is a chance, that we are wrong. Derek could possibly go through all this, with no changes, and risk a lot of complications.
And there is the chance that he could only need one brain surgery and it work. Derek could be healed.
I have thought hard and prayed harder the past 24 hours and have had very little sleep. It was so much to digest. Prayed for open doors, a diagnosis. And we are that much closer, but it is still not 100% clear.
Our next step is a test called VEMP. If the test is positive, we will be even more positive that SSCD is indeed causing the problems. But these tests aren’t 100% accurate. And even if its negative, Derek could still have this condition and the plan of action would not change. But let’s face it. A positive test would make us more confident to go ahead with these surgeries. And more opinions. We want to take this doctors recommendations and discuss this with more surgeons. We are looking across the country for other doctors who specialize in this condition.
If this doesn’t complicate things enough, lets talk insurance. We have to find doctors within our network to do this very complicated surgery. Which at this point, none of the doctors back home figured this out.
Which means the next battle is to get this prior authorized for ‘out of network’. Which I have had to do this before,several times, and its a grueling task of court appeals over the phone and the time it takes, is literally another job. This time is different. We are talking big time surgery and potentially more than one surgery.
What do I encourage others to pray for? This is what I have struggled the most with. It’s what has taken me so long to write. Forgive me. But I have spent all day yesterday researching. Exhaustion surrounds us both.
To pray for a positive test,seems wrong doesn’t it? It would really point to these brain surgeries. And that terrifies both Derek and I. But when I asked Derek, if he could live with symptoms or risk the surgeries, though he has great apprehension, he made it clear to me, to live like this is not a way to live. He is willing to take the risk. His quality of life has been stripped from him.
He is willing to do whatever it takes.
So I ask of this.
Pray for clarity. A great revealing.
That God shows these surgeons what is truly wrong.
Heavenly wisdom. Super natural strength for what is yet to come.
One step at a time. We cannot think deep. God placed this Doctor in front of us at church almost 7 weeks ago. I have to believe that HE has all this in the palm of his hand.
My encouragement to our whole family, friends, and loved ones:
Live in the moment. Day by day, take one thing at a time.
Trust that this will all fall into place.
With that said, I have great faith, that God will guide us. Derek and I were destined to be pioneers.And we just started blazing a whole new trail. The next marathon just began.
We are forever grateful for Dr. Michelle Carrillo-Massa who attended this great divine appointment. Her commitment, passion and fight for Derek is completely heroic to us. She has gone above and beyond and has brought back the ethical way of medicine in a world that has been depleted and deprived from it. Thank you Dr. Michelle. We love you so much.
Along this journey, miracles large and small surround us. We are so grateful for a family we had never met before.
Dale and Mariah.
They read our story, and opened up their home to allow us to stay with them, without ever having met us before. Talk about a leap of faith. Thank you. For listening to the prompting of God and becoming our angels. They have been the most gracious hosts and we are humbled to stay on their beautiful farm.
How fitting for us pioneers. A farm.
We are eternally thankful and grateful for the army of prayer warriors out there. All of you. We have felt your prayers. Your words of encouragement have helped us through this grueling journey. Thank you for taking the time to read this. We read every message that is sent to us. And we are humbled by the response of love. There are no words to express our gratitude.
To our children.
Our legacy of warriors. LIVE. Do NOT let this stop you. Your Dad will be healed. Whitney made it back to college. Thank you Jesus. Her back pain is subsiding and we are grateful to our chiropractor who helped with this and all the prayers for her. Prayer works. Another example.
To our business partners. You amaze us at your determination to rise up with us in adversity. Our team of pioneers we work with, work with a deep perseverance that is remarkable in itself.
To the cashier at Kohl’s, who sent me the Dr.Oz link, of this rare and debilitating condition called SSCD . Thank you Laurie. You are a beautiful reminder that God works in the most random, unbelievable, miraculous ways. God definitely has a sense of humor. This whole journey is living proof of this.
Pray my warriors. Pray for this next test to show us clarity for these surgeons. Pray for peace and continued strength for Derek to continue this great fight. And we keep you all in our prayers.
Sarah Hein, the Pioneer