Friday, February 20, 2015

Should I consider having revision scoliosis / kyphosis surgery? 24 yo Stephanie shares her experience



I would like to first start off by saying Dr. and his team are absolutely amazing. I am 6 weeks post op from my spinal revision surgery. I had scoliosis correction surgery 6 years ago by a different surgeon. Both of my rods had broken and I was in intense pain. One of my rods was even poking through and you could see and feel it. It was horrible. My deformity was continually worsening as was my posture. The Scoliosis Specialist who had done my first surgery just loaded me up with muscle relaxers and pain meds and acted like I could just live with my broken rods. I knew I had to get a second opinion.
One Sunday afternoon I was researching scoliosis surgeons within North Carolina when I came across Dr. Hey's website. I read several reviews that told stories about how Dr. Hey had changed many of his patient's lives. I submitted a patient inquiry form on his website hoping to hear back soon. A couple hours later, Dr. Hey himself called me! I was absolutely shocked to say the least--a doctor called me on a Sunday afternoon?!?! He set up an appointment for me the very next morning (which happened to be Columbus Day--and I was off work).
When I met Dr. Hey I just knew I wanted him to do my surgery. He was so confident that not only could he take out my broken rods--but replace them with stronger rods that would give me a straight back and much better posture. I knew that Dr. Hey was an answer to prayer!
Once I was admitted for surgery Dr. Hey prayed with me and my family and continued to do so during my entire hospital stay. He made me and my family feel comfortable and confident that I was in good hands. The Duke Raleigh hospital staff was absolutely fantastic! I cannot even explain how attentive and sweet they were to me and my family. The care I received made me feel like I was the only patient in the whole hospital!
My experience with the Hey Clinic Team and the Duke Raleigh Hospital staff was incredible. I am now 2 inches taller, and I have a straight back. It is the most amazing feeling ever. I feel so much better than I did before my surgery! I would recommend Dr. Hey to anyone who needs spinal surgery. He is the best! - Steph D on Google.




Before 
Dr. Hey 
Revision

Wednesday, February 18, 2015

Will my quality of life be OK many years after adolescent scoliosis diagnosis? How does it affect my loved ones? Can I be too old to get it fixed? Are there alternatives to surgery?

A week or so ago, I saw Mary Lou, a 73 yo woman from Hendersonville, NC back for follow-up for her severe scoliosis.  Her curves have not progressed since her last visit, but her quality of life has continued to worsen, with husband reporting that she spends 70% of her time in a very special easy chair, because of her back (see YouTube Video).

  He shared that this has really affected HIS quality of life, and their quality of life as a couple, since she has become so inactive.  While she might be considered a "success", since her scoliosis has not continued to progress, her pain, and activity level has continued to get worse, and now she feels like she may have waited to long to get something done with her age now in the 70's.  This is often how I see quality of life change for my older patients who had adolescent idiopathic scoliosis followed by some adult progression:  they do fine for many years, with slight worsening over many years.  Then, at some point, "the wheels come off the wagon" and their pain level often goes up, and activity level goes down much more rapidly.

She wrote up her life story of her scoliosis, which is quite interesting (shown below), especially as it pertains to the life-long affect of scoliosis --- some patients go for many years being very active, but then experience a sudden drop-off in quality of life in later years, in some cases associated with leg symptoms such as weakness, or sciatic pain or trouble standing and walking.  These symptoms are often due to the degeneration on top of the deformity, which progresses, and can cause increasing lumbar spinal stenosis.  Her rib discomfort discussed below may be because of her rib cage now hitting her iliac wing -- something that actually is helping to prevent further collapse of her scoliosis.

This is one reason why earlier intervention during the adolescent and young or even middle age adult periods may help suffering later in life, while providing better posture and self image.   For our many children, adolescents and younger adults that we straighten up each year here at Hey Clinic, these patients will not have that "black cloud" of future progression of curve and/or decreasing quality of life hanging over them.  While it may sound great that Mary Lou was quite active for over 50 years after her scoliosis diagnosis, being confined for most of the day to an easy chair in her 70's is not the kind of quality of life most of us would want for ourselves or for our spouse or child or parent.

Trying to understand the LONG TERM effect of scoliosis and kyphosis is hard, since few of us get a chance to meet someone like Mary Lou, much less do very large long-term follow-up studies to really assess quality of life over an entire lifetime.  For example:  scoliosis bracing has been shown to have some effect for some patients at least for making surgery less likely before an adolescent finishes growing.  However, when you are considering bracing for your child, you aren't just interested in the outcome at age 17 or 18, but at 28, 38, 48, 58, 68, 78, 88, and even 98 year old!  The game isn't over until you've gotten through your whole life.

For some patients, sometimes surgery later in life is not even an option, due to other health problems (cardiac, pulmonary, renal, or severe osteoporosis.)  In Mary Lou's case, since her quality of life was failing, I did take a lot of time with her and her husband, and reviewed all of the risks and benefits of the possible surgery to help her.  This really helped her and her husband to understand the reality of the surgery, recovery, and potential outcomes.  People really appreciate our generous appointment times, so they can get their questions asked, and have plenty of time to allow me and my team to get to know them, and their story, and review all their imaging with them.  Mary Lou opted not to move forward with surgery at this time, in part because she feels like she is too old to handle the big operation.  This is absolutely fine with me -- we actually emphasize conservative therapy for scoliosis.  It's just so important to understand your treatment choices in detail.  We do offer surgical treatment in cases where conservative measures are failing, and quality of life and/or curve progression is worsening, and patients are medically able to handle the surgery.  We are also happy to continue to follow Mary Lou over time with repeat X-Rays and potentially try other conservative measures.  If her leg weakness and trouble walking progresses, we will work up her lumbar area with an MRI.  If that shows a severe stenosis (nerve pinch), that may influence her treatment choices moving forward.  Bone density studies (DEXA scans) can often be helpful for your scoliosis doctor / surgeon to assess your bone quality for handling the surgery, and holding the hardware.  Osteoporosis can sometimes be reversed with special medications given over several months if surgery is indicated, to strengthen the bones.

Enjoy her life story and the story of her family!  Thanks for sharing Mary!
Dr. Lloyd Hey, Hey Clinic for Scoliosis and Spine Surgery.  http://www.heyclinic.com

Three Generations of Scoliosis
by Mary Lou
Mary Lou and two of her three daughters and a granddaughter have scoliosis
Original account dated April 18, 2013 – Page 1-3
Update completed February 17, 2015 – Page 3-5

 I was born in Florida in 1941 and scoliosis came into my life around 1952, right when polio was rampant. My parents took me to Emory University Hospital in Atlanta, where the doctor believed I had contracted a mild case of polio. Back then the best place for polio rehab was Warm Springs, Georgia, at the residential treatment facility founded by Franklin D. Roosevelt. I was there for about a month and for the entire time, 24/7,  I wore a back brace--a corset of sorts with a rod sewn in the back and head traction from a rod attached to my brace --and was bedridden almost the entire time. For a precious four hours a day I was allowed out of bed, albeit in a wheelchair. At this point I had experienced no aches or pain from my condition.

After a month of this the Warm Springs doctors decided it was best to have a spinal fusion. My parents refused so I was brought home to central Florida. Soon after my mother and I spent a month in Atlanta as I got treatment from an orthopedic surgeon there. He put me in a body brace which, as I understood, moved the weight of my head and shoulders to my hips, thus taking the pressure off my spinal column. In Atlanta I also did rehab exercises twice a day along with an ultralight heat treatment. After a month of this I was allowed to go back home to Florida, where I continued the exercises and heat treatment as part of my daily routine for three or four years. I continued to be free of aches or pain.

At age 15 I left Florida for a boarding school in Virginia. Since nobody else had a back brace, my brace went into a bag and under my bed. And forget the exercises! Puberty and teenage years are so hard on a girl. Life went on for me with no medical intervention of any kind and I continued to be free of aches or pains.  It should be noted that by this time, I am not sure when or where, it was determined that I did not have the disease of polio but rather a curvature caused by my spinal abnormality.

Like many young women in those days, I went off to two years of college and then in 1962 I got married at age 21. Almost immediately I had one daughter, then two and a half years later, another. There were no problems at birth but at two years the second daughter had to have pectis excavatim surgery due to her chest sinking.  Around age 10, she was diagnosed with scoliosis. By this time (c. 1976) we were living in Hendersonville, in western North Carolina and we kept the roads hot to the Duke scoliosis clinic in Durham every three months for three years. Since her curve never changed and she had no aches or pain, they discharged her after those three years with no further intervention. She has had no scoliosis-related problems since then and is now age 47. She has no children.

Let me back up a few years to 1970, when we were living in Ft. Lauderdale, FL, where I had daughter number three. When she was 10, doctors decided that she had scoliosis in her waistline area. Eventually it was discovered that, instead of scoliosis, she had spondylolisthesis in her lower spine. The doctor was prepared to do a spinal fusion on her but at practically the last minute, discovered that her main problem was a herniated disc, aggravated perhaps by years of cheerleading. She had surgery for this at age 17. Now age 42, she has had backaches for most of her adult life when she “overdoes it”, but has also been very active (skiing, running, mother to two young children).  In 2004 she gave birth to her first child, a daughter. There were many problems at birth and the child got no oxygen for the first eight minutes outside the womb. She suffered from global development disorder and now at age 9 remains severely impaired intellectually, though she is physically active, living at home near Denver, CO and enjoying school.  It has not been an easy time for her parents and in addition to her many problems, she has just been diagnosed with scoliosis at age 9. Her curve is 32 degrees and surprisingly she has not protested at all to wearing her brace.

Apparently untouched by scoliosis is my first daughter, who will be 50 this year:  She has been very physically active since childhood (horseback riding, skiing). She never had a sign of scoliosis nor has her daughter, my other granddaughter. This first granddaughter, now age 21, also has been very active (gymnastics for several years in her early teens) and has a very healthy back.

As for me, I understand that because I have a double curve, I was “lucky” in that it kept my body in fairly good alignment. I was able to have all three of my daughters with no problems, I taught mentally handicapped teenagers in the public school system for over 20 years and, somewhere in there, I actually did some waterskiing.  I retired from teaching in 1999 and took a part-time job in a bookstore. This required a combination of sitting and standing which caused me to ache on the days that I worked. Since then I have volunteered with our local hospital two or three days a month and work at our church thrift shop every Monday. Both of these volunteer jobs are sedentary. 

My “back” life has changed a good bit in the last few years. I find that if I have to stand for any period of time, it helps to have something to lean on. When I have to walk a lot I rely on a cane to relieve the pressure and when shopping I always get a wheeled basket/cart and lean on it as I walk. I still do not have “sharp” pains in my back but often by the end of the day my lower and most severe curve will cause aching in my left hip, which I can relieve by sitting. At this point I am very sedentary but will start physical therapy and hope to build up my upper core. I love to travel and need to make sure to continue the exercises and bracing, to give me the ability to walk more than I do now. I feel very fortunate to have managed as well as I have, and hope to maintain this degree of mobility in the years to come.

Update as of February 17,  2015

It has been 22 months since first visiting Dr. Hey   On February 2, 2015, I returned to the Hey Clinic; here are details of that visit and its outcome:

* I reported that despite good intentions I did not pursue physical therapy as Dr. Hey prescribed in April, 2013.  I did not wear the lumbar support brace which he provided because it was too uncomfortable for my back.

* Nevertheless I have been able to travel, including a two-week visit to Ireland and Wales and several trips to visit family in Denver, Colorado.  In airports we were always provided wheelchair transportation by an escort from ticket counter to plane. Even so, travel is becoming increasingly difficult and tiring because of the time spent in one position. Our last family trip to Denver was by car because we were unable to book direct flights and changing planes is taxing, even with escorted wheel chair service.  I was unable to drive on the Denver trip but using my cane I did get out and stretch my legs and walk to rest rooms en route.
 
* The only pain in this 22-month period has been in my rib cage on my right side, beginning last October. This rib discomfort is a dull ache and is my most bothersome symptom; at times, typically twice a month, I take hydrocodone in order to sleep. Since early February, 2015 I have had to wear Salonpas heating pads on this part of my rib cage, which from the onset of my scoliosis were rotated to my back.

* I am increasingly sedentary and have difficulty rising from a seated position due to weakness in my knees and thighs.

* Because of my symptoms it became necessary to stop volunteering several days a month at our local hospital.  As a front desk greeter too much standing and walking was required.

* The good news is that tests done on Feb. 2 showed no change in my scoliosis measurements and no problems with nerves.

* At my most recent visit Dr. Hey described in detail the potential benefits and risks of spinal surgery which could help my condition, especially in the years after recovery.  My husband and I had many questions which Dr. Hey addressed and I signed an informed consent form.  I returned home to consider the option of surgery, and after considerable deliberation I have ruled it out due to my age, 73 years and 7 months.

Instead I am recommitting myself, with greatly increased motivation, to physical therapy.  A PT plan was prescribed by Dr. Hey as both preparation for possible surgery and an alternative to surgery.  It consists of core strengthening and HEP complemented by wearing a molded TLSO (Thoracic Lumbar Sacral Orthotic) scoliosis brace.  I have met with a physical therapist, someone who has helped me in the past with other conditions, and scheduled therapy twice a week. She is following the prescribed PT plan. On days when I am not with her I will use a pool at a local retirement community.


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Monday, February 2, 2015

52 yo gentleman relieved of sciatica agony with minimally / less invasive decompressive lumbar surgery

Feb 2 2015
Dear Hey Clinic Team,  
Ashlee, Tracy, Rachel and of course Dr. Hey,
 
I can’t thank the entire Hey Clinic Team enough for providing me so much compassionate care.  I was in so much pain, yet once I arrived at the clinic I immediately felt relief as everyone took on my case with interest, concern and professionalism.
 
Ashlee,
From the moment we spoke on the phone, and the subsequent email exchanges, I knew the Hey Clinic was where I wanted my case to be handled.  Your extra effort, and lobbying on my behalf to speed up the initial consult, was critical to getting the ball rolling.  Thank you so very much for that intuitive grasp of my case your guidance in bringing it together.
 
Tracy,
I’m still in awe of what you managed to coordinate in such a short time.  It was, for me, a miracle. I cannot even imagine the logistics, favors and insights you called upon to bring my surgery to such an expedient start.  I thank you, deeply, for your caring nature, persistence, and your intelligence of the ways to satisfy hospitals and insurance agencies. 
 
I’m on the road to recovery. It feels so good to finally get some sleep and even walk a few hundred yards.  I have all of you to thank for this positive change in my life.
 
Warmest regards, 

Peter G

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 (http://www.srs.org) 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 -  http://www.heyclinic.com  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.

Laurie 

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  http://www.heyclinic.com