Saturday, January 31, 2015

What is the life-long impact of early onset and adolescent idiopathic scoliosis? 57 yo Laurie tells her story

As a surgeon, you learn a lot during medical school, residency, fellowships, courses, conferences, scientific articles, colleagues in societies like the Scoliosis Research Society, and books.  But probably the biggest "teacher" is experience - experience listening to, and caring for patients.  For the last 10 years at Hey Clinic, and almost 10 years before that at Duke Medical Center, I've had the chance to hear many patient life stories with scoliosis, across the entire age spectrum from kids, teens, young adults, middle-aged adults and older adults.  I've learned a lot from these thousands of stories about how scoliosis and kyphosis affected their life as a child/teen in terms of posture/self-image, and pain.  I've learned about how they felt about their years in scoliosis bracing.  And I've learned a lot about how scoliosis can be symptom-free for many years, but then, almost suddenly become symptomatic and quite painful, greatly affecting quality of life.  And I've learned a lot about treating scoliosis and kyphosis across the age spectrum - fixing some adolescent curves in less than 3 hours, getting them perfectly straight, and in other cases spending 7-8 hours doing revision adult deformity front and back surgeries with multiple osteotomies that can be a strain on patient and surgeon alike!  (That's when I go to bed at 8pm after dinner)  This extensive experience hearing these stories, and treating these patients of all different ages has led me to really appreciate the importance of early scoliosis detection, and careful life-long follow-up with proper conservative, and in some cases earlier surgical intervention to prevent severe suffering later in life.  This earlier intervention can also allow for the scoliosis to be treated less invasively, with less risk, shorter fusions, and less intraoperative and postoperative risk.

Last night I received the life story below from one of my patients, Laurie, a 57 yo scoliosis patient of mine, that she wished to share with you.  While her postoperative course was much rougher than the large majority of my patients (Less than 5% ICU stay, < 5% blood transfusion, Length of stay usually under 5 days, < 5% "feel hardware"), it is good to hear her story and how she eventually was able to return go a good quality of life, with good posture,  pain relief, and also knowing that her curves are corrected and stabilized to support her for the rest of her life.  Laurie specifically wrote this to share with all of you, and I hope it helps parents of children or adolescents / young adults with scoliosis to better understand why scoliosis evaluation, life-long follow-up, and treatment is so important for their child, but also for adult scoliosis patients to know that there is still hope for relief, though the surgeries are bigger, and recovery tougher than it is for our younger patients.  Laurie's perseverance to continue to seek out second and third opinions for her scoliosis when she was initially told it was not fixable, or it was "too hard" is also a good lesson -- the Scoliosis Research Society website ( is a very good resource for finding good scoliosis surgeons in your region who may be able to help.

Enjoy her story, and thank you Laurie for sharing.
Lloyd A. Hey, MD MS -  Hey Clinic for Scoliosis and Spine Surgery

My back story

I was born in 1957 in Richmond, Virginia. When I began to walk at 10 months old, I limped.  I underwent an operation to fix my hip.

At 12-years-old, with symptoms of neck pain, I was diagnosed with scoliosis. I was treated at Crippled Children's Hospital in Richmond. Every month, many children met there for treatment. I was given a Milwaukee back brace. I wore that for two years, 23 hours a day. Finally, I was released from the doctor's care.

At 21 years old, before leaving the state for job, I checked back in with the doctor. He said my back was still fine.

In my 30s, I had two children. Both were big babies, 8 pounds 12 ounces and 9 pounds 14 ounces.

Sometime later I had occasion to have x-rays taken and my back looked pretty bad and the spine was severely curved. 

In 2002, I saw an orthopedic doctor with complaints that my back and my hip hurt. He said, "let's start with the hip."  I had my hip replaced at that time. But my back only got worse.

In 2011, I wanted to start working on my back again.   Standing and walking had become very painful.   I walked bent over.  I went to my family doctor.  He told me scoliosis was not painful and that lots of people had back pain.  He said a back operation had just as much of a chance to make things worse as to fix problems.  He sent me to a physical therapist.

A friend of mine told me about Dr. Hey and how he had worked on a 79-year-old woman whose condition sounded worse than mine and the woman had even been able to return to playing golf.  It sounded like a miracle, but I didn't think I needed a miracle.

My back just continued to hurt.  Back to the doctor and he finally took x-Rays.  He said he had never seen a spine that looked worse than mine.  He offered me pain medicine.  I said I'd rather fix the problem instead of masking it.  He sent me to a specialist who talked about his associate doing surgery.  Since it was a big surgery, I researched hospitals in the area.  All the ones closest to me were rated a "C."  I asked the doctor for names of doctors who worked at other hospitals.  In the meantime, I asked the pastor of my church about his recommendation, because he had had a very serious back operation the year before. He gave me lots of good feedback.  He had nothing but great things to say about his doctor and the hospital, Medical College of Virginia.

I made an appointment to see his doctor and got all the tests done, x-ray, MRI, CT scan.  He said the spinal curve was too old and hard; there was nothing he could do.  But it would get worse.  I went to my car and cried - it felt hopeless. 

Several months later I was ready to try again. I remembered my friend telling me about Dr. Hey. I looked at his website and made an inquiry. Someone called me very soon and made an appointment. My husband and I went down to Raleigh in November 2013.  We were very impressed with Dr. Hey and his staff. Dr. Hey assured us that he could operate on my back and make it, although not perfect, much better. He said he had done many comparable operations. He did go over all of the risks and details about the operation. We scheduled the surgery for January 2014.  We left with a packet of instructions for preparation.

We returned in January for the surgery. Dr. Hey prayed with us and our pastor before the surgery. The operation took about eight hours. It was a rough day for all of us. I had to have blood transfusions and I spent the night in the ICU.  The next day, they tried to get me up to walk, but my blood pressure was still too low and I could not walk. I got another blood transfusion and stayed in the ICU another day. The next day I was moved to a step-down room. The following day I was moved to the orthopedic floor.  Most of the nurses were great and very nice. Dr. Hey came to visit me personally every day, even on the weekend. And the food was really great.  Everyone has always said the incision was nice and clean.

Because of my age, my blood pressure problems, the fact that I have multiple sclerosis, and the fact that I had to learn to stand and walk again, not bent over, it made my initial recovery harder than expected.  After a week in the hospital, I had to be moved by ambulance back to Richmond, to a rehab facility.  Dr. Hey gave me restrictions that I could not lift more than 5 or 10 pounds and I could not bend and twist for a year.  I spent three weeks in rehab getting physical therapy and occupational therapy.  Afterward, I returned home. I was visited for several weeks by a nurse and physical therapist.  I had a check-up with Dr. Hey at the end of March and returned to work on a lighter schedule right after that. I continued to take medicine for pain until the middle of April.  For a long time, my back just felt "creepy."  There were spots on it that felt tight. But, right from the start, the lower back pain that had worried me for years was gone.

I was back to my regular work schedule by the end of April. At my six month check up in July, Dr. Hey reported that I was doing very well. At my one year check up in January 2015, Dr.
Hey released me from his care.  He said I was walking very well and my back looked great. The spine look good and the scar looked good. The restrictions were lifted. The back does still feel like there is some hardware in there, but I don't have the pain and I walk standing straight. That's something I haven't done for more than a decade. I'm so grateful my friend told me about Dr. Hey. I recommend him to anyone with back problems.


Saturday, January 24, 2015

Does scoliosis surgery really help teenagers and adults to feel better about themselves and their posture, and ensure better quality of life?

We had great clinic yesterday, with lots of thankful 6 week postop visits from our pre-Christmas scoliosis "blitz" we had.  It was so great to see so many precious teens and their parents back for follow-up with kids back to school, looking great and feeling great.  We've also done a bunch of revision scoliosis and kyphosis surgeries recently, including some folks who traveled quite a ways to come to Hey Clinic.  Their stories are below as well and on our YouTube Channel.  One patient named Matt shared how upset he was going through high school very self-conscious of his posture.  Now at age 24, he is standing up straight with less pain, 7 years after his original surgery, which was in part complicated by some collapse above and below his old fusion.

Gotta get to bed, but enjoy some of these stories and pictures below.
All the videos below were shot this past Friday at Hey Clinic, except Matt's, which was shared with me from the week before.  You can see why I love my job, getting to be a part of these precious family's journeys through a crucial period.

Lloyd A. Hey, MD MS  -- Hey Clinic for Scoliosis and Spine Surgery

Saturday, January 10, 2015

Hey Clinic Celebrates 10 Year Anniversary This Week! So many precious patients, families and co-workers to be thankful for.

This week marks a special time for Hey Clinic -- our 10 year anniversary for opening up our doors as a lifelong scoliosis center!  Today is the first day I've had a few minutes to sit down and reflect on that, after a very busy several weeks.  The text that I got this morning was a good way to start:

I got the following text from a scoliosis mom from Nevada earlier today, whose daughter Jackie had scoliosis surgery with us at Hey Clinic earlier this fall, which she gave me permission to share with all of you:
"Dr Hey-  Jackie is doing GREAT after her surgery!  This is her first regular season game this year.  She is in black.  So hard to get a good action shot!  Hope you got her xrays and that all looked good. Have a great weekend."

It was way back in 1989, while working as a resident for Dr. John Hall, Dr. John Emans and others at Boston Children's Hospital at Harvard that I got the idea of serving patients with scoliosis, kyphosis and other deformities across the whole life spectrum -- not just as children/adolescent (pediatric) or adult.  While I saw the patients at Children's getting great care, there was this awkward period when those scoliosis patients grew up -- either without surgery, who had been observed and/or braced, or patients who had surgery.  Where do they go as an adult?  Do they just find an adult spine surgeon?  Or just do nothing and hope for the best?

No, there should be a better way --- caring for scoliosis and other spinal deformities from age 0 to 100, and developing a long-term relationship with the scoliosis patient and family.  I pursued this vision through pediatric scoliosis training with Dr. Hall, Emans and others at Boston Children's Hospital, and then with adult orthopedic surgery and neurosurgery spine fellowship training at Duke University Medical Center, with Dr. William Richardson, Dr. Dennis Turner, Dr. Wilkins, Dr. Cook, Dr. Alan Friedman and others.  I then joined the faculty at Duke, where I served for almost 10 years, where I focused on serving patients with spinal deformity, including patients with complex revision spinal deformity surgery.  

But it was 10 years ago this week that I moved my practice from Duke Medical Center in Durham to the Duke Raleigh Hospital Campus, and opened up the Hey Clinic for Scoliosis and Spine Surgery -- an independent clinic focused on delivering high quality, compassionate scoliosis care across all ages.  We've served thousands of families since then, helping patients with conservative treatment, minimally invasive treatments, as well as performing thousands of scoliosis surgeries at both Duke Raleigh Hospital, and WakeMed Children's Hospital.  Boy have we learned a lot, and grown a lot, and improved a lot.   We've developed our own custom electronic health record (EHR) for scoliosis, we've had weekly quality improvement meetings every week now for many years, where we apply our our Deming-Inspired Continuous Quality Improvement methodologies to continuously learn and improve -- not just in the clinic, but across the continuum of care.  

I've worked with my SRS colleagues from around the world on developing newer techniques for scoliosis surgery safety, and ways of getting kids, adolescents and adults straighter, and with a better long-term quality of life. The learning never stops.  

After 10 years at Hey Clinic, 19+ years of practice, and 25 years since I was inspired and mentored by Dr. Hall and Emans, I must say that I still love my "job" every day, which doesn't feel like a job at all… just an amazing opportunity to be a part of a really important web of relationships where I can contribute and help make a difference for the long run… and bring a smile to a child, teenager, or even an older adult to get their wish to "Get It Straight!"

Jonathan and his mom standing up straight
going home from WakeMed after 2 months
While I am not a good writer / blogger, and haven't gotten much better at that since high school ( I really didn't have a good high school English experience).   Maybe that's one reason why I went to engineering school, and not liberal arts school!  However, I have definitely always been a "tinkerer" / "fix it" kind of person growing up, and have definitely been blessed to be able to gradually improve/perfect the "craft" of scoliosis care and surgery.  This has come from a constant commitment to continually learn, and continually focus on getting better, not just as the surgeon / craftsman, but also as a team leader and team member.  Great scoliosis care is definitely a team sport, and we've been honing our team both at Hey Clinic and with our hospital and other care partners with a constant effort to make things better and safer over time for our patients and families.

One of my most special memories from 2014 was caring for Jonathan, a 10, now 11 yo boy with a connective tissue disorder, who had a scoliosis and kyphosis over 130 degrees.  He was unable to gain weight since his stomach and intestines were being crushed by his scoliosis and kyphosis.  He also had breathing issues doe to poor lung capacity.  And he also had many previous surgeries with history of infections and lots of scar tissue.  Some medical centers actually turned him down for even considering surgery.  Well, this fall we finished an incredible journey with Jonathan, his amazing family, and the WakeMed Children's Hospital, at the Raleigh Campus.  Jonathan was placed in axial traction for several weeks, actually gained over 14 lbs, had improved pulmonary function and then looked like a completely different kid!  I then fixed his scoliosis this past December, and after some time in the PICU and on the floor, he actually went home the Friday before Christmas, after a huge celebration lunch for Jonathan, his family, and the wonderful WakeMed staff.  This journey is well documented by Jonathan's dad Mike and mom Jennifer on his Caring Bridge site, which his folks said was ok to share with all of you here on the blog: Jonathan is back home now, still gaining weight, and back to school, and off all the narcotics, and always has a big smile.  His incision has healed well, and he is breathing well, and has a whole new posture!

I do thank God, my family, my mentors, SRS and other colleagues, Hey Clinic staff, hospital staff, and all of our patients and families who have made this journey so far absolutely a joy and a blessing.  Many years ago after I was hit by a car and spent months in the hospital with a horrible leg fracture and multiple surgeries, I felt that God was going to take that bad thing and turn it into a good thing where I could use my tinkering gifts to help serve patients --- Hey Clinic has been, and will continue to be a great Living Learning Laboratory to keep working to make that an ever better reality for many patients to come.  I am humbled to see what God has done so far through so many awesome people I've had a chance to know and serve with.  

So for now it's time to go to bed, and get up and round at WakeMed and Duke Raleigh Hospital.  One of my patients actually traveled across the country for a revision scoliosis surgery, and got his wish for a straight spine after 7 years.  While we suggest to our out of state patients seeking scoliosis care to always consider the SRS.ORG website to find a scoliosis surgeon near them, some, like Jackie, and others still choose to make the trip to Hey Clinic.  If they do, we always strive to make it worth the trip by using our compassion, experience, and team-centered quality control processes to deliver the outcome and patient and family experience that brings a smile and lasting results for long-term quality of life, good posture and appearance, as well as curve correction and prevention.

Thanks to all of you who have helped Hey Clinic over these past years in so many ways, including prayer, encouragement, hard work, innovation, service, late nights, early mornings, some sweat… but many smiles and laughs along the way as well.  A big part of the Joy in the Journey is who we get to Journey with!  And you all are a great joy to all of us.

Lloyd A. Hey, MD MS
Hey Clinic for Scoliosis and Spine Surgery