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.


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