THE MAN BEHIND THE SCALPEL

Six days and counting...(very deep sigh), so we thought this would be an appropriate time to introduce you to the man behind the scalpel, i.e. Ashley's surgeon, Dr. Lloyd Hey.

As eluded to in the original post, Dr. Hey has endured suffering of his own.  At the age of 16, Dr. Hey was involved in an accident and nearly lost his left leg and his life.  Through his very long recovery, Dr. Hey got to see the good and the bad side of health care. Dr. Hey's website tells the story best, and I encourage you to read his inspiring story.  For all you folks who have an inquisitive or mechanical mind and enjoy fixing things, you will especially enjoy this.

The following is a link to his background https://www.heyclinic.com/about/background.asp

To his philosophy:
https://www.heyclinic.com/about/philosophy.asp

And, here is a link to his Curriculum Vitae https://www.heyclinic.com/about/curriculumvitae.asp

And to top all this...he is a Christian.  Recently I came across an article on Faith In Practice, a blog from Triangle Christian Medical Fellowship.  The article was entitled, "Salt and Light.  A Personal Story of Prayer and Practice by Dr. Lloyd Hey.

http://www.trianglecmf.org/blog/

We have prayed so much for God's guidance in choosing the surgeon he wants to operate on Ashley.  One day this week, I must confess I was having the most difficult time yet in this journey.  That same day, I found this article about Dr. Hey.  Coincidence folks...I think not, in fact, I don't believe in coincidence, but I do believe in God's divine intervention and direction.

When we saw Dr. Hey back on March 26th, he quizzed Ashley on whether she realized there was a woman in the Bible with kyphosis whom Jesus healed.  He told her to research it.  Sure enough, Luke 13:10-13 is exactly that.  We've read it and heard it so many times, but never associated it with this.

What the three of us have learned from this is that it's not God's will to heal Ashley of this deformity short of surgery.  However, God will still be the healer, in and through Dr. Hey.

Thank you God for your faithfulness and the hope and encouragement you provide us through the truth of Your Word.

Good night everyone.  Thank you from the bottom of our hearts for each of your prayers for Ashley Brooke.

SEVEN DAYS AND COUNTING

And the countdown really begins, 7 days.  No more pushing it to the backs of our minds...it's pretty much front and center and unable to be pushed anywhere even in the business of the day.  It's reality.

So, a lot of you are still unclear what's going on with Brooke's back and what is involved with the procedure(sorry, Brooke is her middle name and what I've called her since she was born, that is besides Sunshine.  BTW, she let her preschool teachers know, "Only my Mama calls me Brooke."  So, don't attempt it, she'll set you straight).

So, here's a look firsthand.

Normal lordosis is the two forward curves seen in the neck (cervical spine) and low back (lumbar spine). Normal kyphosis is the two backward curves seen in the chest (thoracic spine) and hip areas (sacral spine). Each of the naturally occurring and normal soft curves serves to distribute mechanical stress incurred as the body is at rest and during movement.

Ashley's Lateral X-rays

Ashley has wedging of the thoracic vertebrae and then the exaggerated lordosis in her lower back.  The film on the left was from 2010 and although it shows the kyphosis, her posture is still normal.  The film on the right is current and her posture is beginning to have a forward pitch.  Her thoracic spine is now literally hanging out further than her behind. Dr. Hey explained, and I have also read on other patient's blogs, that after surgery patient's can suffer a brief issue with imbalance because their center of gravity has changed and the brain has to re-train itself (thankfully, as Dr. Hey explained, the brain is able to do this fairly quickly).

One of many concerns is that Ashley's curve has progressed although she has been skeletally mature

over this time period.

Ashley's fusion will be from T3 to L3, 13 levels, and then she'll have the titanium rods inserted and attached just to secure the spine until the fusion is completely solid.  For the fusion, Dr. Hey will use bone grafts from Ashley's spine where the osteotomies are performed as well as sterile cadaver bone graft. During the procedure her spine will be monitored with what is called evoked potential monitoring for sensory and motor function. 

Well, that's a little more information on what's going to take place or fairly close to it, like I said I'm not sure I want to know every metal instrument detail at this point.

I can't end without leaving an amazingly uplifting and encouraging passage from God's Word

GOD'S PERFECT KNOWLEDGE OF MAN

"O LORD, You have searched me and know me,

You know my sitting down and my rising up;

You understand my thought afar off.

You comprehend my path and my lying down,

And are acquainted with all my ways.

For there is not a word on my tongue,

But behold, O LORD, You know it altogether.

You have hedged me behind and before,

And laid Your hand upon me.

Such knowledge is too wonderful for me;

It is high, I cannot attain it.

Where can I go from Your Spirit?

Or where can I flee from Your presence?

If I ascend into heaven, You are there;

If I make my bed in hell, behold You are there.

If I take the wings of the morning,

And dwell in the uttermost parts of the sea,

Even there, Your hand shall lead me,

And your right hand shall hold me.

If I say, "Surely the darkness shall fall on me,"

Even the night shall be light about me;

Indeed, the darkness shall not hide from You,

But the night shines as the day;

The darkness and the light are both alike to you.

FOR YOU FORMED MY INWARD PARTS;

YOU COVERED ME IN MY MOTHER'S WOMB.

I WILL PRAISE YOU, FOR I AM FEARFULLY AND WONDERFULLY MADE;

MARVELOUS ARE YOUR WORKS,

AND THAT MY SOUL KNOWS VERY WELL.

MY FRAME WAS NOT HIDDEN FROM YOU,

WHEN I WAS MADE IN SECRET,

AND SKILLFULLY WROUGHT IN THE LOWESET PARTS OF THE EARTH.

YOUR EYES SAW MY SUBSTANCE, BEING YET UNFORMED.

AND IN YOUR BOOK THEY ALL WERE WRITTEN,

THE DAYS FASHIONED FOR ME,

WHEN AS YET THERE WERE NONE OF THEM.

How precious also are Your thoughts to me, O God!

How great is the sum of them!

If I should count them, they would be

more in number than the sand;

When I awake, I am still with You.

Oh, that You would slay the wicked, O God!

Depart from me, therefore, you bloodthirsty men.

For they speak against You wickedly;

Your enemies take Your name in vain.

Do I not hate them, O LORD, who hate You?

And do I not loathe those who rise up against you?

I hate them with perfect hatred;

I count them my enemies.

Search me, O God, and know my heart;

Try me, and know my anxieties;

And see if there is any wicked way in me,

And lead me in the way everlasting."

Psalm 139



DILIGENCE AND FOCUS

August 2, 1994 - Our first glimpse of Ashley Brooke

"As you do not know what is the way of the wind,

Or how the bones grow in the womb of her who is with child,

So you do not know the works of God who makes everything."

Ecclesiastes 11:5

Four years ago, we could have chosen to attempt to figure this out all on our own, embarking on a downward spiral of "How" and "Why".  Don't get me wrong, there were times, just as there still are, when we were so weak...days where we wished we could shake one another and wake up from the bad dream.  The enemy stood with a banquet feast ready to serve us a platter of blame and bitterness, convincing us we deserved to feel abandoned by God.

However, there was One greater who held the Truth.  One who stood ready to open His arms wide to us full of sovereignty, hope, love, grace, mercy, and comfort. Only through His grace were we able to grasp hold of His promises of never leaving us.  Only through His strength were we able to apply Proverbs 3:5-6 to our daily lives:  "Trust in the Lord with all your heart, and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your paths."

Folks, God is holy and sovereign!  We will never fully understand many of the obstacles in our lives that God allows, but if you are a child of the King, you can rest assured that He is in control and nothing is a surprise to Him!

During trials, stay diligent and focused on Christ.  God's desire is not that you be consumed with the trial but for you to allow Him to consume you!  Ashley's junior class this year had a motto of, "Don't toss your friend under the bus."  Well, in this case, I say don't toss your faith under the bus...throw the enemy's lies and torment directly in its path.  Do not give the enemy the benefit of stealing your focus and thereby any hope of comfort and peace.

Every Journey Has A Beginning Point

As the post title states, every journey has a beginning point, and that's where I suppose we'll start this blog...from the time Ashley's spine first changed, through the diagnosis progress, and up to the present.  First, let me start by stating that I know there is nothing random about Ashley being diagnosed with this disease.  We confess that its purpose is still a mystery to us at the present time, but we will trust God in all of His sovereignty, wisdom, and strength to see us through.  Our desire is that this blog will be less about the disease and more about God's unfailing love and presence even through these difficult days. We fully acknowledge that we cannot rely upon our own understanding or strength to endure this journey.

June 2008 brought a sudden change in the appearance of Ashley's posture and the shape of her thoracic spine.  While playing a board game with a friend, seated Indian-style on the floor, I had my first glimpse of what would weeks later be diagnosed as Scheuermann's kyphosis.  For the first time ever, I noticed an overly pronounced curvature to Ashley's spine, resembling an exaggerated hump.  Ashley had just turned 13.

We promptly scheduled her for her a checkup with her pediatrician.  After his exam, he asked permission to bring in an associate to examine Ashley.  You can imagine the fear I felt as her mother when generally you're blessed to be able to see one pediatrician on a visit, when he returned to Ashley's exam room with two additional physicians.  The consensus was that Ashley needed to see an orthopedic specialist.  At this visit, they gave us no indication of what they thought the problem was.  So, we leave the pediatrician with an appointment to see a local ortho doc in July.

Fast forward to July 3, 2008, our first visit with our local ortho doc.  By this time, we had done our own extensive research on what was going on and were pretty convinced of our findings.  Sure enough, he confirmed our suspicions, Scheuermann's kyphosis.

Explaining Scheuermann's is the simple part. The following is an explanation directly from Dr. Hey's website: (Dr. Hey is the spine specialist we have chosen to follow Ashley over the past 4 years).

Scheuermann's Kyphosis:

Scheuermann's kyphosis is named after the Danish radiologist who first described the condition.

As with postural kyphosis, Scheuermann's kyphosis often becomes apparent during the teen years; however, patients with Scheuermann's kyphosis have a significantly more severe deformity, particularly thin individuals.
Scheuermann's kyphosis usually affects the upper (thoracic) spine. It can also occur in the lower (lumbar) back area. If pain is present, it is usually felt at the apex of the curve.
Activity can aggravate the pain, as can long periods of standing or sitting. Exercise and anti-inflammatory medication can help ease associated discomfort.
When x-rays of patients with kyphosis are examined, the vertebrae and disks will appear normal in those with postural kyphosis, but they will appear irregular and wedge-shaped in those with Scheuermann's kyphosis.

What causes Scheuermann's is another story.  To date, there is no definitive cause for Scheuermann's and it is still widely debated.  These include theories of a sudden growth spurt at puberty in which the posterior portion of the spine grows at a rate more rapid than the anterior, thus causing the hunched- back appearance.  There is also debate on whether there is a hereditary factor involved.

Scheuermann's is less common than scoliosis, and it has been our experience that there is far less documentation from individuals having journeyed this same path.  For that reason, we are documenting our experiences so hopefully other individuals and families can benefit.  Every case is different, so this is by no means to say everyone diagnosed with Scheuermann's will have this exact same course.  Quite the contrary.  In fact, some individuals do not progress very much at all after diagnosis.  Some progress extremely rapidly, sometimes within months of diagnosis.  Others, more gradually over time, as has been the case with Ashley.  Also, all kyphosis is not Scheuermann's kyphosis.

Getting back on track...I apologize, I digressed with the diagnosis and causes.  Our local ortho docs prescribed a regimen of physical therapy which we embarked on.  During the course of the therapy though, we were becoming increasingly concerned because Ashley was complaining of pain from the therapy, and to that point, pain had never been an issue.  We had begun our own search for more information about this disease and had actually begun the process of compiling a list of specialists within the United States who specialize in spinal deformities.  The last therapy session Ashley had, her therapist confided that he was no longer comfortable working with Ashley and that her curve seemed very rigid, and he, too, was aware that Ashley was now complaining of pain whereas in the beginning, she had had no pain.  He suggested we seek the opinion of a specialist in scoliosis and kyphosis deformities.

Our search had already revealed that there was quite a bit more information out about scoliosis than kyphosis.  However, there were a few physician's names who repeatedly received high recommendations for their excellent care on various scoliosis and kyphosis support group boards.

At that time, I was working for a national medical transcription company and provided services for a group of hospitals and physicians' clinics in Missouri (from North Carolina...again, no coincidence here...more like God's divine plan).  My supervisor just so happened to live in Missouri, within driving distance of Barnes Jewish Hospital and one of the top physicians in spinal deformity in the country.  When I mentioned his name, she immediately knew of him and his reputation.  The only problem we had was that we were in NC and he was in Missouri.  She then offered to open her home to us if we wanted to come out and see this doctor for a consultation.  To make a long story short, using her nursing background and research skills, we were actually able to find out about Dr. Lloyd Hey at Duke Raleigh Hospital right here in NC.  She contacted me one day and gave me a link to his website.  What she discovered was that I, too, had found Dr. Hey and found that he was another physician who repeatedly received extremely high recommendations.  Our search yielded a total of only about 4 physicians in the U.S. that we would consider taking Ashley to, based on patient recommendations, education, training, and ONGOING training and research, and Dr. Hey just happens to be within a 1-1/2 hour drive from our home. Dr. Hey's name consistently came up within the same circles in which the esteemed doctor in Missouri did, and still does today.  In fact, Dr. Hey and his surgical team have very recently attended a scoliosis and spine deformity seminar in Missouri.

You know what, I don't think Dr. Hey even knows the rather long story about how we found him.

Okay, I digress again folks, and I do apologize.  This first post will be the longest because it covers a time span of 4 years.

We were able to secure an appointment with Dr. Hey in August 2008.  Dr. Hey is an amazingly talented and God-gifted surgeon, and the best part is, he gives God all the glory and recognition.  It is refreshing to see a medical professional allow God to work through them and in them to radically impact the lives of so many.  His patients have traveled to him from all across the U.S., as well as other countries.

Here is a link to his life story, credentials, and patient blog:  https://www.heyclinic.com/index.asp.  Dr. Hey regularly blogs on patient's surgeries and outcomes.  Look for the link on his website to his "Spine Blog."

To make a long story short, Ashley has been followed by Dr. Hey for the past 4 years, at first twice a year, and then yearly.  This past March we returned for a recheck and found that even though Ashley has been skeletally mature for some time, her kyphosis has advanced.  She is now approaching 75 degrees.  More than that, she is now having discomfort with exercise, sitting and standing for prolonged periods of time, and having pain in her neck/shoulders and lower back.  Like many other kyphosis patients, their lower back develops an exaggerated lordosis in response to the kyphosis.  This has also progressed to 82 degrees.  She is also developing a forward pitch with her pelvis and a rounding of her chest down onto her abdomen, which is more prominent in certain clothing, and this is causing her to be more self conscious about her appearance.

We discussed our options with Dr. Hey.  He placed her on a program of core strengthening exercises, a back brace, and anti-inflammatories as a temporary measure.  However, for the long term, there is no solution outside of surgery.  In fact, allowing it to continually progress can cause further complications and possibly hinder the level of correction.  Surgery is pretty much a matter of when, not if, at this point, especially now that she is developing symptoms which are what generally lead these patients to seek surgical correction.

Ashley's desire is to pursue a career in nursing and to also use her nursing skills in missionary endeavors.  After prayerfully seeking God's guidance, we have scheduled her surgery for May 31, 2012, with Dr. Hey at Duke Raleigh Hospital.  Knowing the commitment required for her education and training and the rigors and physical demands of a nursing a career, Ashley desires to have this surgery between her junior and senior high school years to allow adequate recovery and strengthening before embarking on God's calling for her life.

So, family, friends, and church family, we are asking and desirous of your prayers for Ashley, Johnny and I over the coming weeks and months.  Not only for us, but for Dr. Hey and his extended team of care providers as well.  We know that God has allowed this trial to enter our lives, and we will look to Him for guidance and strength.

I'll be updating from time to time as things develop.  I think I've given you a good background on where we are at this point.  I realize now that I should have began this back 4 years ago.