SSCD. Superior Semicircular Canal Dehiscence. A rare condition- only 1% to 2% of the population have been diagnosed with this since it was first discovered in 1998. Not everyone who has the syndrome even has the symptoms. SSCD has been labeled the “great otologic mimicker.” Because it has some similar symptoms as other ear disorders. The anatomic defect of SSCD is believed to be a developmental anomaly of the temporal bone in the vast majority of cases. At birth, the bone over the top of the inner ear, which is the floor of the middle cranial fossa, is very thin or absent. Over the first three years of life this bone thickens considerably. However, about 20% of the population is left with holes in this area. They are typically free of any symptoms unless pressure from intracranially cause the brain to prolapse through one of the holes. An event typically not seen until the later decades of life.
If an event occurs in the majority of these patients, it will set off the onset of symptoms. A head trauma, or major pressure-altering event. Scuba diving, air travel, even straining. There is also evidence now of gradual thinning of the temporal bone over the superior semicircular canal. This thinning is an extremely slow process. But over time, thinning can naturally take place and create this nightmare condition as well.
Derek was misdiagnosed, had a surgery that had complications of an implant moving and destroying his vestibular balance system. This trauma more than likely became the major pressure-altering event that led to the sudden onset of SSCD.
It all makes sense now. After a wild goose chase across the country, four plus years, dozens of doors slammed in our faces…
We finally have answers. Wow does that alone feel awesome.
Derek came out of the surgery May 4th immediately knowing that he was spared. None of the horrific complications that could of happened, did. We are on our knees thanking God that so far he is not worse. For it is a miracle! No doubt what so ever.
The past several days, I have to be honest, have not been easy. These are the moments, I would rather not share. Not have a recording of. The days when you wish the day away. Time can’t go by fast enough.
These are those kind of days we are in.
But then I realized, though I cannot chose our circumstances, I can chose how I handle it. I can see all the ugly or I can see all the raw beauty.
So, here it goes.
Derek’s recovery slipped backwards. Hard to decipher at first what the cause was. The side effects of medication he was on to reduce swelling, the actual swelling, pain from surgery, or what symptoms he is still having. Regardless of what the cause was the result was a relentless migraine set in. For four days, he lay, completely and utterly miserable.
These are the days when you feel absolutely helpless.
And then, God always sends what you need when you need it.
Reinforcement came. He sent us our daughter Whitney.
Thank you Uncle Jim and Aunt Gail for flying her out here.
Just her presence put a huge smile on his face. She even was able to get him out for a walk. And the real lifesaver is Whitney brought Netflix.
Andy Griffith! Derek’s FAVORITE show is on 24/7. Did you know that there are 8 seasons with approximately 32 episodes of each season of the Andy Griffith show on Netflix? Yep! That’s a whole lot of Barney and Andy.
Lord have mercy.
If I hear Barney one more time…..
I love “Little House on the Prairie.” Derek LOVES “Andy Griffith. “What can I say?
On Sunday, it was Gavin’s 8th grade confirmation. A time of celebration. The beginning of becoming God’s warrior for life. The forever continual journey of building a relationship of faith with our King of Kings. Since we are living a pioneer life in the world of medical disease, health insurance, and our living situation, why not live the pioneer life in church too?
Gavin was the first kid in our church to be confirmed virtually. Thanks to Abiding Shepherd, Pastor Abrahamson and Pastor Krause held a live church service online and had Gavin facetime in during the service. (Thanks to his sister Alex who stood in Gavin’s place and held an IPAD, Gavin was able to see as if he was actually there. Pretty awesome.) Scarlett, Mike, Nana and Papa were all at our church to witness the virtual confirmation. Sometimes in life, you just have to improvise. God doesn’t care about the traditional things in life. Obviously. Jesus birth took place in a stable. Not a hospital. Not a palace. A smelly barn. So, why are we so hung up on everything being so perfect and traditional?
Pastor Abrahamson picked Gavin’s confirmation bible verse:
Matthew 28:20 Surely I will be with you always, even to the end of age.
Pastor chose this passage for Gavin to remind him, that no matter where he lived Jesus will always be with him. No matter what.
Yep, I bawled like a baby.
Even Snickerdoodle attended the virtual service.
To our church family back home, we feel your prayers and support. And are so grateful that we were led to Abiding Shepherd five years ago.
Unfortunately during this all, Derek behind closed doors suffered greatly. Though he missed the LIVE confirmation, he watched the recording of it.
His confirmation gift to Gavin is to go indoor skydiving. His encouragement is to live life to the fullest. Giving all glory to God. He told Gavin, “I can’t go with you yet, but I will be there to watch you!”
Gavin. You. Can. FLY.
After four days of a monster of a migraine, this morning, it finally lifted. And we thank GOD for it. Derek feels like he has been run over by a mac truck. However, I’m confident that this recent setback was side effects to the medication he was on. He is now off everything and just taking Tylenol, a whole lot of rock solid nutrition from Shaklee, and a super healthy diet.
This morning, he woke up without a headache. And so far, his head is full of pressure, a lot of pain from his incision. His head still hurts and his right side of his jaw and muscle ache deeply from the surgery. However this is all expected after the kind of surgery he had.
Here are some VERY promising signs. Though he has a lot of pressure still from swelling, and sound is muffled, his own voice isn’t amplified. Before his own voice sounded like he was screaming. Maybe its not a true result because of all the swelling, but this is incredibly promising. He hears a whooshing sound of his heartbeat, but it’s a totally different sound. I believe he is hearing the throbbing of swelling. Not his actual heart beat. YAHOOOOOOOO!!!!!!
Even the fan to the fireplace bothered him before, and this morning, that sound didn’t bother him.
I’m doing the HAPPY DANCE!!!!!!!!!!!!
In the days to come we will be able to tell what is different on the right side and what is still the problem on the left side. He’s exhausted now and sleeps most of the day when he isn’t watching Andy Griffith!
As for other sounds, we just don’t know yet. Dr. Gopen assured me yesterday that he is EARLY in recovery. But so far, today is a GREAT day. We celebrate in these milestones. And we pray that from here on out, only better days of healing and recovery continue. Tomorrow we make the trip back to Los Angeles and see Dr. Gopen and Dr. Yang.
To be honest, just when we all felt alone, frustrated, and stuck in the healing process, I went to our PO Box. It was so full, that I had to go to the post master to receive the rest of the mail. Humbled beyond humbled by all the messages. It’s just like my friend Rhonda had told me months ago. “The Lord will provide like mana from heaven. He will give you exactly what you need when you need it.”
All messages, prayers, humorous cards and notes from all of you, inspired us all. We read each and everyone of them, and they renewed our strength and hope in FAITH.
You inspire us all so very much!
The power of PRAYER is a gift.
Use it. As often and as much as you need it.
And guess what. It’ free to pray.
As the days pass, a deep passion of exploiting this rare and debilitating condition is hitting me. Though I do not understand what this condition feels like, I have had a front row seat of watching it rob the quality of life from my sweet Derek for 4.5 years.
These patients need support! Understanding and continued research into this horrific condition. There will be a day, when I return back to the Midwest, I will be a strong voice in educating and exploiting this horrific condition that is still not understood in the medical community.
So that no one has to ever go through what Derek has endured.
When it comes to health insurance, it doesn’t matter what insurance you have. If you end up with something rare and have to go to very specific doctors that are not in your original network, you will end up exactly like we are. This is the culture we live in the medical world. So if you think you have good insurance, wait till you have a rare disease. You will quickly realize that there is no good insurance anymore. Unless you are a politician or a convicted felon and in prison- Then you have awesome insurance.
But here’s the good news.
When you have FAITH, and are willing to trust in a higher source, HE will provide. And that is exactly what is happening for Derek. WE trusted. Took the risk and God is taking care of the rest.
Greater the risk = greater the reward!
Faith is the ultimate health insurance policy to have.
Our encouragement to all of you is this:
When you have a prompting on your heart to reach out to someone. Just do it.
When you are struggling and frustrated. Surrender ALL worry to God. Just do it.
When all you can do is patiently wait. Wait patiently.
Just do it.
When you have an opportunity to do something great. Let go of fear. Stop googling the details to find all the reasons why not to do it.
JUST DO IT!
“I am the Lord who heals you.” Exodus 15:26
Sarah Hein the Pioneer