Monday, May 14, 2012

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:  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.

1 comment:

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