Sunday, September 29, 2013

Justin's Mom Tells Their Story of Justin's Spondylolisthesis Journey

Justin's mom just sent me this blog entry to tell their story.  
My summary of Justin's surgery is found on previous blog.
Dr. Lloyd Hey -  Hey Clinic for Scoliosis and Spine Surgery
http://www.heyclinic.com
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In January of 2010 our son Justin was diagnosed with a grade 3 Spondylolisthesis. He underwent spinal fusion surgery at L-4 to S-1 on June 9, 2010. Although the doctor proclaimed the surgery a success our son’s recovery was plagued with complication. During a routine follow up exam in June of 2011 it was discovered he had a cracked screw and on April of 2013 the surgeon stated a second surgery was required to remove the cracked screw and a loss screw. The surgeon recommended an anterior and posterior approach to correct a now grade 4 Spondylolisthesis.
We didn’t want our son to have a second surgery but God opened our eyes to his daily struggles and limitations. He was experiencing limited movement, walking bent forward and his low self-esteem. Our son has not played sports for 3 ½ years.
Our Journey was not an easy one, who could we find and trust to care for our child as if he was their own? Our searches lead us to Dr. Hey at The Hey Clinic.  When we met with Dr. Hey his confidence and expertise was evident and we agreed upon a surgery date at that very first visit.  Dr. Hey also suggested that we feel confident with him by getting a second or third opinion. 
A wise man seeks councils from others and that is what Dr. Hey did he consulted with doctors from around the world and determined that the anterior approach was not required.
Our Son’s second surgery was performed at Duke Raleigh Hospital on September 26, 2013 his surgery consisted of removal of the Legacy hardware inputting of new hardware, posterior exploration of fusion mass, lumbar 4 to iliac wing.  The surgery lasted 9 ½ hours. Before surgery Dr. Hey prayed a prayer of thanksgiving.
 We were able to leave the hospital on September 29, 2013 and our son is walking upright with minimal assistance; he is almost three inches taller and will be returning to school in a few weeks.
Dr. Hey was a God sent to us; we pursued a third opinion and were given no hope of our son walking normally with a 25% percent chance of foot drop. If you are faced with decisions such as ours please contact The Hey Clinic, his staff is top notch and can answer any question you may have. When our son had surgery the operating room nurse Kelly came in on her day off.  I pray you get a second opinion from Dr. Hey it can change your life, it did for our family and now our son has hope for a brighter future.

Yours Truly, The Harper Family


16 yo Justin with Grade 4 L5-S1 Spondylolisthesis pseudarthrosis with flatback syndrome and 45 degree anterior tilt goes home today!

At Hey Clinic, we see many straightforward adolescent, early onset and congenital scoliosis patients, as well as  adult patients who had adolescent and/or childhood scoliosis now with curve progression and pain.  We also see many patients for second and third opinions for surgery, revision surgery and scoliosis bracing.  Some of the revision surgery consults we get can be quite challenging, and actually require me to do further research, and even touch base with some of my Scoliosis Research Society (SRS.ORG) colleagues around the world, as well as combing the literature to find the best, least invasive solution.  Some cases also require me to really use my engineering training and experience, carefully examining the loads, vectors, and translation and re-angulation forces, as well as rod/screw stresses to figure things out.

Justin's case definitely fit into this last category.  Justin had a high grade L5S1 spondylolisthesis, probably Grade 3, which means that his L5 vertebra was slipped between half and 3/4 forward on the sacrum.  He had an instrumentation and fusion done elsewhere at age 13 from L4-S1, fused in situ, meaning that they just fixed it in the position he was in.  Unfortunately, the hardware loosened and one screw broke, and the L5 vertebra slipped even further forward, and then started to fall off the front of the sacrum, tilting forward about 45 degrees.  One of the remaining sacral screws was poking out, tenting the skin on the left side.  Justin had quite a bit of pain, and really couldn't stand up very well, having to keep his knees bent with "flat back syndrome" posture.  In some sense you could say that Justin's top half of his body was not very well connected to the bottom.  Big problem.



There are several ways to approach this problem:  one way would be to go anteriorly and posteriorly (front and back), and jack up the L5 vertebra back on top of S1, with an interbody spacer.  That's pretty invasive though, and runs small risk of retrograde ejaculation, which could make Justin sterile.  Another way to do it is through a posterior approach, to try to pull the L5 vertebra back into position and tilt it back up where it belongs.  The problem with this approach is that it can cause a stretch injury to the L5 nerve roots.  To help prevent the L5 nerve root problem, you can do something called a "dome osteotomy", where you cut off the rounded off top of the sacrum, shortening it a bit, and give the sacrum a flat surface so the L5 vertebra can sit on top of it.  This shortening helps prevent the stretch on the nerve roots.

After much preop research, planning and discussion, including with several of my SRS colleagues at the SRS meeting last week, including Dr. John Emans and Tim Hresko from Boston Children's Hospital and Dr. Sig Berven from UCSF, a final surgical plan was developed.  I found several good articles out there through PubMed, and this article from Kan Min et al in the European Spine Journal had a very good discussion of the surgical technique for the decompression and reduction.

His surgery went very well this past Thursday.   I used a special operating room bed and 3D Navigation to help with the anatomy, and new hardware placement and correction.  I was able to get the broken screw out of the sacrum using special screw removal set and the 3D nav.  The L5 nerve roots were carefully identified and decompressed, including removing the disc bulges below both nerve roots, and ensuring nerve roots were freed up.  Then, I completed the L5S1 discectomy, identifying the large "dome" of bone of top of sacrum, rounded off by the spondylolisthesis over time.  Using the bur and osteotomes, coming at it from both sides, gently retracting the nerve root sac, I was able to remove the "dome", and create a shorter, flat surface.  I then used 2 very strong iliac wing screws combined with redirected sacral screws and carefully contoured titanium rods to form the foundation of the construct.  I then used my special "Pursuader" system to very slowly and gently pull L4 and L5 backward and into alignment, doing a few twists of the "corkscrew" tops then waiting, checking the evoked potential monitoring, and checking the L5 nerve roots bilaterally for tension and pressure.   "Cool" was the word at that point.  The L5 vertebra came beautifully back into position.  Very Cool.   Slowly, and steadily the L5 vertebral body, and Justin's entire top half of his body slid back into proper position, at which point I was able to lock the caps into position, put in the bone graft and close!!   No evoked potential changes and we were able to get a great correction.  This whole process took about 6 and a half hours!! Whew.  Aftwerward, Justin's folks were definitely thankful, and so was Justin as you can see below.  He has done wonderfully postop, standing up straight, and with his nerves all working fine.

So, Justin went home today looking and feeling well.  Many thanks to everyone who helped make his surgery so successful, including my spine colleagues, and even "Nurse Kelly" who came in on her day off to help.

Dr. Lloyd Hey
Hey Clinic for Scoliosis and Spine Surgery  http://www.heyclinic.com.


Saturday, September 28, 2013

12 yo Madeline goes home from Duke Raleigh Hospital postop day 2 after her scoliosis surgery with big smile! Nice note from her parents to thank Hey Clinic and Duke Raleigh Hospital Staff.

 After getting back from SRS Sunday late afternoon from Lyon, France, it has been a busy week in the operating room and clinic, culminating with both clinic and surgery on Friday. Before heading home Friday night, I checked my texts and emails before hitting the road home.  In the stack of messages,  I found this very encouraging note from Madelene's parents:

Dear Dr. Hey,
I can only imagine that you receive many emails from extremely thankful parents just like us.  It has been almost 1 year to the day that we learned about Madeline's scoliosis.  I vividly recall being very overwhelmed and frightened at the onset of her diagnosis. Her curve was progressing quickly.  Those feelings were compounded when we were informed by another orthopedic about the possibility that she may have neurofibromatosis.  Once we were able to rule that out, it was actually a relief to be able to focus on the scoliosis. 

During those beginning weeks, I knew that I had to do more research and learn of other specialists in our area.  I wanted to be sure we had a Dr. who was exceptional in his/her field.  Thanks to Google, we found you!   I was immediately impressed with your website.  The expertise, knowledge, and compassion of your clinic was evident from the website--and it was quickly solidified the moment we had our first appointment with you.  My husband, a design engineer, was able to connect with you thanks to your background at MIT and the technical/design component that comes with orthopedics.  We appreciated your knowledge and kindness as we navigated through finding the right time for Madeline to have the surgery. Everyone in your office has been gracious, professional and helpful. Words cannot express how grateful we are to all who have played a part in Madeline's journey.  

I am also thrilled with our experience at Duke Raleigh. The level of care we have received at Duke Raleigh has been phenomenal.  Everyone from Holly, to Maggie the OR nurse who comforted Madeline as she was so scared right before surgery, to the nursing assistants has been so wonderful.  It's been another blessing to have you stop by our room each day.  Those few minutes of face time with you are reassuring to all of us.  Madeline's face lights up when she sees you.

God blesses each of us with a gifts and you have many for which we are eternally thankful.  Best wishes to you and the many pre-teen girls and their families who enter your office.  May everyone have a lifetime of hope for a "straight" future!

-Nancy and Brett W____

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I got a chance to see Madeline each day this week twice a day after her surgery at Duke Raleigh Hospital this past Wednesday.  She was in her private room Wednesday evening with her parents doing very well, just a little swollen in the eyelids.  She introduced me to "Sprinkles", her little stuffed animal, who indeed had very colorful sprinkles all over.  I showed her the X-Ray, which showed her spine all straight, and she gave me a big smile.  She then reached around her back and felt her back where one of her two humps used to be... and she said "The hump is gone!"  A happy day for Madeline and her folks.

 Postop Day 1 on Thursday, she was quite a trooper, getting up in the morning, and walking down the hall and back again with physical and occupational therapy.  Yesterday, Friday, she went to the homebound room, and got cleared going in and out of the test car, and climbed some stairs.  I got a chance to see her and her folks and get a couple quick photos together before she headed home.

Having the chance to serve families like Madeline's is a such a joy, that it energizes all of us at Hey Clinic and Duke Raleigh Hospital and WakeMed Children's Hospital to keep serving better in the future!

Dr. Lloyd Hey
Hey Clinic for Scoliosis and Spine Surgery
http://www.heyclinic.com

Wednesday, September 25, 2013

12 yo Madeline got her "straight wish" this morning at Duke Raleigh Hospital.


I just finished doing surgery on 12 yo Madeline, who had a double curve scoliosis progress to 52/48 this past July.  Dad thought curve has gotten bigger in the couple of months since then, and curves definitely looked a bit bigger with her in big growth spurt.  As shown above, we got a nice correction, and her lower 3 lumbar discs are now in much better alignment -- should last her a lifetime.  Her preop "humps" that we could even see under anesthesia on OR table are gone.  Time go to see the parents.  Surgery took 3 hrs 52 minutes, with no blood transfusions.

Dr. Lloyd Hey -- Hey Clinic for Scoliosis and Spine Surgery  -- http

Thursday, September 19, 2013

Are Scoliosis Braces Adolescent Idiopathic Scoliosis Effective for Stopping Curve and Preventing Surgery? New Weinstein Randomized Control Trial Published Today NEJM and Presented at SRS says "YES!"

I had the opportunity to hear Dr. Stuart Weinstein present the results of the BRAIST Randomized Control Trial for scoliosis bracing here at the Scoliosis Research Society (SRS) conference in Lyon France.  Also today, the study is published in the New England Journal of Medicine (NEJM) and you can read the whole article online by clicking here:  http://www.nejm.org/doi/full/10.1056/NEJMoa1307337?query=featured_home#t=article.

Dr. Weinstein was able to show that bracing was able to allow 75% of the children/adolescents who were braced were able to keep a curve below 50 degrees, with 50 degrees at time of skeletal maturity being considered a "failure" and all others considered a "success."

After the session was over, I got a chance to go up and speak to Dr. Weinstein, and to Dr. Lori Dolan, his co-author for U. Iowa to discuss the paper in greater depth.  Both were very gracious with their time, and I got a chance to talk to Lori at greater length. Several key points from our dialogue emerged:
1) Current indications for scoliosis bracing is far too broad and needs to be narrowed.  We are bracing too many children and adolescents who are not benefiting from treatment.
2)  Scoliosis Bracing does benefit a subgroup of patients, but the children/adolescents must be willing to wear the brace for 13-18 hours per day to have a reasonable chance to see any benefit.
3)  Lori agreed that we can't fully declare "success" with no surgery or curve less than 50 degrees at skeletal maturity, since some of those patients will continue to progress and/or have pain in adulthood and may eventually need surgery.
4) The emotional/family effect of wearing a brace during adolescent growth period should be considered when making the decision and personalized for each situation.

I also had some time this afternoon to see a couple of good science blogs talk about the article as well:
http://www.science20.com/news_articles/back_braces_work_adolescents_idiopathic_scoliosis-120784.

Here's an extended quote from the ScientificBlogging Site that gives a nice summary of the paper and some quotes from Dr. Weinstein:  For the study, investigators enrolled 383 subjects at 25 institutions in the United States and Canada between March 2007 and Feb 2011. Although the study began as a completely randomized clinical trial, the team eventually added a "preference cohort," where patients and families could choose their own treatment. About 40 percent of study participants were randomly assigned to bracing or to close observation without bracing. The remaining participants made their own choice regarding bracing or observation.
Patients in the observation arm received no specific treatment, while those in the bracing arm were instructed to wear a brace for 18 hours per day. Treatment was considered to be unsuccessful when a curve progressed to 50 degrees or greater – a point at which surgery is typically recommended. Treatment was considered a success when the child reached the age of skeletal maturity without this degree of curve progression.
In January 2013, the trial was stopped early after finding that bracing significantly reduced the risk of curve progression and the need for surgery, and that more hours of brace wear was associated with higher success rates. Among both the randomized and preference cohorts, 72 percent in the bracing group, and 48 percent in the observation group achieved success. In addition, the results suggest that the more a patient wore the brace, the better the results; wearing a brace more than 13 hours per day was associated with success rates of 90 to 93 percent.
"This study definitely shows braces work and are effective in preventing the need for surgery," Weinstein says. "Children who are at risk should be treated with a brace, and they should wear it at least 13 hours a day for it to be effective."
According to the researchers, the findings are clinically relevant to patients for whom bracing would typically have been recommended. But until now, that recommendation had not been based on solid data. "This study presents important evidence addressing the fundamental question facing families and clinicians dealing with the diagnosis of AIS – does bracing prevent the need for surgery? The answer is clearly 'yes'," Weinstein says.
The investigators also suggest that current bracing indications may be too broad, since 48 percent of patients in the observation group and 41 percent of patients in the bracing group who wore the brace infrequently also achieved success. "Further analysis will help us identify those AIS patients for whom bracing may be the most beneficial," Weinstein concludes.
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I liked Dr. Weinstein's comments in the blog above, but would probably be cautious about concluding that bracing prevents the need for surgery altogether, since the endpoint for their current study is only until skeletal maturity --- the game isn't over when you are done growing.  In our natural history study that we are preparing for publication now, as many as 38-40% of patients with scoliosis as a teen continued to progress during adulthood.  Lori did say that they are planning to do a 2 year follow-up on their cohort to see if there is any further progression.  We both agreed that even long-term follow-up would be helpful -- even lifetime!!  Certainly my hundreds and hundreds of adults over the years with progressive painful scoliosis would encourage us to consider such a long-term, full life approach.
In any case, it is a wonderful study and may encourage some of our guests to consider bracing, but it is a decision that requires dialogue with all parties -- especially the young lady or gentleman who needs to commit to wear the brace for at least 13 hours a day for possibly several years.
Getting new guidelines for scoliosis bracing will also be important to look for in the future motivated by this study.  

Dr. Lloyd Hey
Hey Clinic for Scoliosis and Spine Surgery
http://www.heyclinic.com