Thursday, December 10, 2015

Thank You Note from 15 yo Susan 6 weeks postop adolescent idiopathic scoliosis

Saw 15 yo Susan back for her 6 week postop visit, who made me a wonderful home-made thank you car that I share below.

"12/10/2015
Dr. Hey,
Thank you for all the help you have done.  After the surgery, I know i can do the things I love to do without having limits or being in pain.  Throughout the day of my surgery, I was scared and so was my family.  But when you said a prayer for me and my family, me and my family knew everything was going to be just fine.  Thank you so much!!  You made a true difference in my life!!  And for that I want to thank you.    Love, Susan"





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

Thursday, November 5, 2015

24 yo Vanessa with severe scoliosis and one lung looking well and feeling well at 5 months postop


We saw Vanessa and her husband back in clinic today, and she was absolutely radiant!  We've shared her story on a previous blog with her permission, and again today with he permission.    She was sent to me by Dr. Chris Brown, a wonderful Duke spine surgeon who I have known for many years.  Vanessa was quite a challenge:  a severe scoliosis, and missing one lung from birth, which is not a good combination for long-term cardio-pulmonary health, and even for perioperative risk.   She had done very well, however, and I am thankful that she now able to enjoy better quality of life with her 3 yo and husband, better posture and appearance, and also better long-term outlook for her cardio-pulmonary health!  Vanessa and her husband share their updated story on YouTube video and transcribed text below.
Dr. Lloyd Hey -- Hey Clinic for Scoliosis and SpineSurgery

“I am Vanessa. I am originally from Fayetteville. I have been seen by Dr. Hey. My surgery was this past June of 2015. I suffered from scoliosis since I was about 12 years old and it was ongoing pain, literally. I am really grateful now because Dr. Hey has fixed my spine. I feel prettier now. I used to grow my hair really long to hide my hump and now I cut it short, so I’m happy about that. I have a 3 year old that I can keep up with now. I took him trick or treating recently and I was excited to look at the pictures because I didn’t have any hump and I was able to last all night long. It was great! So I am very thankful for Dr. Hey and his staff and everybody at Duke Raleigh who took care of me. I’m very grateful. I feel beautiful. Much more beautiful  than I did before. Life is great and is going great now.” -Vanessa

“I would just like to thank Dr. Hey and everybody at the Hey Clinic and Duke Raleigh medical center. Just for getting my wife to where she wanted to be, where she is pain free. She is taller now. Pain free everyday too. A lot happier and her morale is a 100 times better.” –Vanessa’s husband

Vanessa's new back posture, incision looks good
Vanessa's very good side posture postop


Wednesday, September 23, 2015

Can I regain quality of life after flat back syndrome kyphosis and scoliosis surgery? Email received today from Sheila, South Carolina shares.


Sheila had severe flatback syndrome, spinal stenosis, and severe kyphotic posture combined with severe L5S1 anterolisthesis below a previous Harrington Rod fusion done many years ago for her adolescent idiopathic scoliosis.  Her pre and postop posture is shown on previous blog post.    She sent me this email earlier this am, with her latest accomplishment.  --- Thanks for sharing, Sheila!  You go, girl!  Dr. Hey

"Hello!  Had to share my weekend with you. This is our bridge here in Beaufort going to Lady's island and I walked it both Saturday and Sunday this past weekend. I made it all the way to the other side and then back again. It has a gradual incline to the top, and my much younger friend ( 23 years old) who walked with me, was very concerned about the incline.  She said if I wanted to, we could only go halfway and come back.  Nope. I said I'm walking the whole bridge and back. And we did. She was amazed. And even more amazed that I did it again the next day. It's about 3/4 of a mile each way. Not too shabby for someone who is recovering from spine revision surgery.  LOL I haven't been able to walk this bridge in over 2 years. I was in too much pain from being bent over to be able to do it. My husband reminded me I couldn't make it from the parking garage to your office the day I came to see you. We had to stop several times. When I first approached the bridge, I stood at the bottom and looked up and said to myself, can I do this?  I was just hoping to make the walk up to the top and then come back down to my car.  I made it to the top, stood and enjoyed the view and then started  going down the other way.   And I made the climb twice!  My hubby was worried. He said only go half way.  When I came back and told him I did the whole bridge, he cried. And then I cried. And we remembered that day  before surgery,  when I couldn't walk to Dennys restaurant from our hotel. I couldn't do it. And next month,  we will welcome a new grandbaby and this grandma will be able to stand up straight beside his crib. I am so very happy that I decided to have this surgery. I wished I had sooner. But I was scared.  And by the way, anyone who is worried about their clothes afterwards in warmer weather because of the scar, don't worry at all. You can wear anything you want.  My scar looks great.  Went right over the old one. That was a concern to me cause before I was in a body cast for 9 months years ago with the first surgery and didn't worry really about what it would look like.  This time I did. I just want others to know that I'm not sure if it was possible for anyone to have been more scared than I was. And I did great.  And had a great outcome. This surgery now allows me to walk without pain, stand without bending my knees constantly,  stand straight and not be bent over, stand at my sink and do dishes,  stand at my stove and cook, go to events and not be constantly looking ahead for a bench to sit on. And so much more. Please share my story with those who are trying to decide to have revision surgery. They won't regret it.  I never dreamed I would be walking this bridge EVER again in my life.  Thank you again and I'll see you in November. Sincerely,  Sheila C. "


Thanks again for sharing Sheila!!  Keep it up!
Lloyd A. Hey, MD MS -- Hey Clinic for Scoliosis and Spine Surgery
http://www.heyclinic.com

Friday, July 31, 2015

Hand-written Thank You Notes....even from the texting generation! Mentorship, and thanks for the whole team.

After finishing up a day in surgery or in clinic, it is always a great joy to find a hand-written note from one of our patients on my desk.  This week I've received a couple of notes shown below -- one from Alex, a 20 yo gentleman from Venice, Florida who had a fairly severe kyphosis that I straightened out for him back in May.  He is heading off to medical school next week! His note is encouraging, since as many of you know, I was inspired to be a surgeon because of my own experience as a patent as a teenager.  I was helped by an orthopedic surgeon who literally gave me my life and my leg and my ability to walk back.  I spend time each week mentoring medical and pre-med students helping them to truly consider how they should take care of the whole person, and whole family, and not just think about diagnoses, procedures, and "cases."  

Sometimes this inspiration happens for patients like Alex as well.  Another postop teenager named Cedar, from Asheville, NC told me this week in clinic that she now wants to be a surgeon,  after I fixed her severe scoliosis a year ago...  Perhaps these 2, and maybe others will help take my place some day when I  retire.  However, God willing, I am not planning to retire anytime soon.  Like my mentor, Dr. John Hall at Boston Children's Hospital, it would be my great joy to keep serving as a scoliosis surgeon for many years to come.  Dr. Hall finally retired at age 80, after 3 Harvard retirement dinners, and I believe his wife finally putting down the final ultimatum!  

My hope is that I can hire a few younger surgeons in the years to come, and share what I've learned through my experience caring for many children, adolescents and adults with spinal deformity using successful conservative treatments in the clinic, as well as surgical treatments in the operating room.   Passing on this learning and wisdom should help keep Hey Clinic going, and growing and improving for many years to come, with excellence.  

20 yo Alex and his mom May 2015 after kyphosis surgery

Here is the note from Alex:  Dr. Hey, I wanted to express my thanks again to you and your awesome team; having you fix me up has done me a lot of good not only physically but psychologically as well.  I am getting ready to start medical school next week, and I can't tell you how much this experience has helped me define where I want to take my career.  You have been a great role model for me, even if our time spent in person has been brief.  Talk to you soon, and God bless you and yours.  Alex"



13 yo Kristin's note was inspired and completely written out by her alone, which was accompanied by a collection of fresh chocolate-covered strawberries and apples that we were able to share with the entire Hey Clinic staff yesterday afternoon.  
Her note reads: 
"Dear Dr. Hey, Thank you so much for fixing my spine and taking care of me during my recovery in the hospital.  I would also like to give thanks to the nurses who helped me handle my pain, helped me sit up, and walk.  I feel little to no pain at all.  :)  -- Kristin"
Kristin, we will be sure to pass along your thanksgiving to the Duke Raleigh Hospital nurses and physical therapists and occupational therapists who helped you!  There were actually quite a few people who helped you even during your surgery while you were asleep who are also a key part of our team.  I will thank them as well.  After my severe leg injury and 3 month hospitalization, I actually made several trips back to the hospital floor and visited the nurses and therapist to just say thanks and to show them that I was actually starting to walk again.  I also shared with them how their compassionate care helped me to get through a very dark valley of my life, and inspired me to become a doctor some day.  

So let's face it:  we're not just X-Raying, measuring, bracing, and straightening up crooked spines here to prevent heart and lung compression and/or pain and disability now or later in life.  We are interacting with very special, developing human beings -- who are quite impressionable.  If we handle this whole experience with your child, adolescent or adult loved one well, they not only end up with the desired CLINICAL result, but PSYCHOLOGICAL, EMOTIONAL and WHOLE LIFE DEVELOPMENTAL and INSPIRATIONAL result that may have a huge impact on their life as they grow up and choose to serve someday.  That's the kind of personalized "signature care" we have been seeking to gradually perfect over many years now with our whole team.  

And that is when we get the hand-written thank you note that makes our day.



Thank you Alex and Kristin for taking the time to send in a thank you note.  It is so encouraging for me and for our whole team.  Each guest and their family is precious to me, and to our entire clinic and hospital staff, both at Duke Raleigh Hospital, and WakeMed Children's Hospital,  and these notes really help us to keep pressing on to serve better and better over time.

Lloyd A. Hey, MD MS
Hey Clinic for Scoliosis and Spine Surgery
http://www.heyclinic.com

Let us know if we can be of any help for a second opinion regarding conservative (including bracing) vs. surgical treatment for your child, adolescent, or adult loved one.  Our team is ready to help in a non-rushed, no pressure, highly educational way.  There is an easy link on our home page to send in an appointment request.

Monday, July 27, 2015

24 yo Stephanie tells her story: pain-free and enjoying new posture and life after revision adolescent idiopathic scoliosis surgery

After, and before revision scoliosis surgery with Dr. Lloyd Hey
I was originally diagnosed with scoliosis when I was 13. I was never braced--just given all forms of physical therapy, pain meds, etc. Finally by the time I was 18--my curve had gotten much worse and I was in terrible pain. I was playing golf in college--but was in so much pain I had to drop out of a tournament in the middle of a round. I knew then I could not live like this anymore. After my first surgery--my back was considerably straighter--but I still had a hump (from the kyphosis I was yet to be diagnosed with). The pain was much better--but I still had some rough days.

Less than five years after my first surgery--I was walking around the bank (where I work) and all of the sudden I felt this awful pain in my back and heard a sound that sounded like a gun shot. It was terrifying. I immediately was in tears---I was in unbearable pain. I called my doctor and drove there immediately. They did X-rays and discovered that two of my rods had broken....

I really never thought the day would come when I would be totally pain free with a straight, flat back. I couldn't even imagine this ever happening--all I wanted was for the broken rods to be fixed. Every day was a struggle since I had both of my rods break. I couldn't sit, stand, or even lay down comfortably. I became dependent on pain meds to help me sleep and get comfortable--but those barely even touched the pain. I could feel my lower rod protruding through my skin--and each day it seemed to be sticking out more. The surgeon who did my original surgery gave me lots of pain meds and shots. He didn't seem to think the rod needed to be surgically fixed. I was beginning to lose all hope.

After a few months of suffering with the broken rod--I decided to start looking for other scoliosis specialists within the state for a second opinion. On a Sunday afternoon I just happened to come across Dr. Hey's website. I could not believe all of the success stories and before and after pictures. My "after picture" looked NOTHING like the ones he had on his website. I decided to put in a request asking for someone to contact me. I knew this would probably take a while. Later that afternoon--my phone rang and Dr. Hey himself contacted me about my request! I could not even believe it! He scheduled me an appointment the very next morning (which happened to be Columbus Day--so I was off work). This all seemed too good to be true. When I arrived at his office--the girl told me he didn't have any available appointments for months. It was amazing to me that he would fit me in his busy schedule like he did. He took X-rays and diagnosed me with Kyphosis--which is probably what led to my original rods breaking. He confidently told me he could fix my scoliosis and kyphosis and give me a stronger construct which would lead to a flatter, straighter back.

Forward to after my surgery---I had an amazing experience at the Duke Raleigh Hospital with Dr. Hey's Team--everyone was so amazing! As soon as I woke up from my surgery-Dr. Hey handed me a picture of my X-rays--I could not even believe it--my back was completely straight!

Me, last weekend with my new posture.
Six months later and I am completely PAIN FREE. It is amazing. I am 2 inches taller, my back is straight and flat. I feel like a whole new person! I can do everything I ever wanted to do without pain! It is absolutely unbelievable. Dr. Hey and the Hey Clinic for Scoliosis and Spine Surgery was a true answer to prayer. I cannot even express how blessed I am to be able to live my life pain free! I just hope other people are able to find Dr. Hey who have had failed surgeries who believe that there is really no hope to being fixed and pain free---when there definitely is!!! 

We love stories from our patients that let you see the compassionate, excellent care you will receive as part of our care family. 

Check out our other successful revisions-
http://drlloydhey.blogspot.com/2014/05/fwd-thank-you.html
and
https://www.youtube.com/watch?v=1nPbX16UHeY



Contact us at http://www.heyclinic.com for an easy appointment request.
We would be happy to serve you and your family with a thorough second opinion about possible scoliosis bracing, surgery, or revision kyphosis, spondylolisthesis or scoliosis surgery for your child, adolescent or adult loved one.

Our guests tell us that we make it worth your trip!

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


Friday, June 26, 2015

24 yo Vanessa with one lung since birth and severe scoliosis gets her wish for new posture and pain relief. She tells her story.

I was born with one lung and was diagnosed with scoliosis at age 12. At that point in time my spine was too far gone for any kind of brace, surgery was the only answer. We were afraid to do surgery because at 12 years old I had already medically been through so much. So I fought scoliosis for years and I was in pain all the time due to the curve. My hip went bad and then during my pregnancy the curve got worse and actually became a triple curve.
After the birth of my son we searched for the best surgeon to help me and would take on my high risk case. We were referred to Dr.Hey by another orthopedist. From the beginning, he treated us like family and took such great care of me. I was very comfortable with Dr.Hey and his team.
I now feel like I should at 24!

We thank Dr.Hey for fixing what we thought was impossible. Thanks for straightening me out!”
Vanessa Mcmanus and Family  Surgery date 6/2/15

Vanessa, before surgery with Dr. Hey

Vanessa, before scoliosis surgery

Vanessa, before scoliosis surgery

Vanessa, before and after scoliosis surgery with Dr. Hey

Vanessa's before and after scoliosis surgery, back view, shared from patient with permission

Vanessa's new posture, even at hospital (photo shared by patient after hospitalization with permission)
Vanessa at hospital after surgery in Hey Clinic T-Shirt... Got it Straight with Dr. Lloyd Hey

Vanessa's back when she got home from hospital with plastic surgery closure and hump gone.



Vanessa's new posture at 6 week postop.
Incision healing nicely, humps gone, shoulders level

Vanessa and her husband Joshua with me at 6 week postop visit 7/30/15 at Hey Clinic with her preop and postop X-Rays


We would be happy to serve you and your family with a thorough second opinion about possible scoliosis bracing, surgery, or revision kyphosis, spondylolisthesis or scoliosis surgery for your child, adolescent or adult loved one.

Our guests tell us that we make it worth your trip!

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


Tuesday, June 9, 2015

Flat Back Syndrome and Spondylolisthesis - can I ever stand up straight again?



I received these 2 pictures from Sheila, from South Carolina, who had flat back syndrome anterior/posterior surgery with me a few weeks ago, and is now doing very well. She had an old Harrington rod fusion with severe L5S1 spondylolisthesis with spinal stenosis.  

Email text received today with first and second photos!
Hello. I wanted to share with you this BEFORE surgery picture. This was taken the day we left for Raleigh NC 4 days before surgery.  This is my son. He wanted a picture before we left. I am also emailing you an after picture.
------------------------
AFTER surgery. 2 weeks post op.


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

Tuesday, May 12, 2015

How quickly can my teenager get back to sports and even the prom after adolescent scoliosis surgery



Natalie, a 15 yo 6 weeks s/p T5-L2 instrumentation and fusion doing great, who wrote this in email on 5/4/15: 


"Turns out I danced the night away at prom and 5 weeks after my surgery I was able to get back on the field and pitch a whole game , hit, run , slide and do everything everyone else on the team could! Everyone was so shocked including myself , this would have never been able to happen without you! I've been back to playing softball and Thursday was my last game but I went out with a bang! I pitched the whole game, slid into the base, dove back to the base and even hit a home run!"


Natalie:  you go girl!!!    Lloyd A. Hey, MD MS  Hey Clinic for Scoliosis and Spine Surgery

Saturday, May 2, 2015

Robert in his 30's shares difference scoliosis surgery has had on quality of life and improved posture.

I saw Robert back at Hey Clinic this week for his one year postop visit after his scoliosis surgery with us.  He had scoliosis as a teenager, and was left with a residual deformity that actually progressed during his early adulthood. He did a lot of research over the years, and eventually decided to get it fixed now in his 30's.  He shares his story here in this YouTube, including his path through recovery, getting back to the gym with weight lifting,  and back to family life including carrying heavy car seats, and enjoying a better posture.

Lloyd A. Hey, MD MS -- http://www.heyclinic.com



Saturday, April 18, 2015

Playing Sports and Long-term outcome from Shilla Procedure and Definitive Instrumentation and Fusion for Janelle, Early Onset Scoliosis

Got this email from Janelle's dad earlier today.  6 yo Janelle had 120 degree early onset scoliosis we treated Dec 2010 with Shilla Technique  combined with anterior fusion (similar to growing rod), followed by postop followup, and 3 years later definitive instrumentation and fusion at age 9

Looking great Janelle!  
Dr. Lloyd Hey, 
Hey Clinic for Scoliosis and Spine Surgery.  http://www.heyclinic.com.


Dr. Hey,
Good morning. Janelle just came home from her third soccer game this spring. She is doing great and having lots of fun. Her coach's daughter is another patient of yours-- Rachel.
Blessings to you and your family today.
Cort, Katrina, Janelle, Ethan, and Isaac
Picture is attached. :-)

(shared with family permission)

Sunday, April 12, 2015

Adjacent Level Failure / Stenosis below Harrington Rod fusion. Finding patients who have had found hope and success and relief on Hey Clinic YouTube and Blog

I saw this this woman in her mid-50's from Virginia with her husband on Friday, who had a Harrington Rod fusion as a teenager, and now has progressive back and radiating thigh pain.  It even is painful to turn over when sleeping.  You can see from her CT myelogram that there is an extremely tight "pinch" or stenosis just below her Harrington rod, and that she also has flat back syndrome.

She is anxious about considering surgery, since she had a horrible experience as a teenager with surgery and a body cast for 9 months -- almost like a PTSD problem for her.

We are going to try some conservative treatments, but epidural injection already did not help, since stenosis is just so tight.  If the conservative treatment fails, there is hope for her with surgery, and we could even do it in a less invasive / minimally invasive way without having to go in through her abdomen either anteriorly or laterally.


She asked if she could talk to some of my previous Harrington rod extension fusion patients, and I seemed to remember we had several patients on our YouTube channel as a good next step.  As you can see from the long list, we have had a lot of experience helping not just children and adolescents, but many adults with scoliosis and kyphosis, including those needing revision extension work.  We also do have previous patients, who in certain cases we connect with our patients considering surgery, which is our "Surgery Buddy System."  But, our Blog, searching on keywords, as well as the YouTube channel is a great place to start.

Maybe some of these patient stories will help some of you as well?


Lloyd A. Hey, MD MS
Hey Clinic for Scoliosis and Spine Surgery
http://www.heyclinic.com


Here are a few YouTube links for you:
https://www.youtube.com/watch?v=C1_TIjrnMeo    Crystal J, had Harrington Rod extension fusion.  Could be good buddy.
https://www.youtube.com/watch?v=7RcIX7j8mXw  Cheryl R, in mid 40-'s.  Had Harrington Rod as teen, and then extension fusion.  Good possible buddy.
https://www.youtube.com/watch?v=lcpM1oA3RQ8  Elizabeth was 55, had Harrington rod fusion as teen, then had extension fusion 5 weeks before video.  Good possible buddy
https://www.youtube.com/watch?v=LTXZxKRLkJc  Charlene J - had previous Harrington Rod surgery.  Might be a good "buddy"
https://www.youtube.com/watch?v=wWwv779T8zQ  -- Lisa  may be a good one for you to talk to.  
https://www.youtube.com/watch?v=prOd5Ko6oaw   55 yo woman 6 weeks postop from thoracolumbar iliac wing fusion for severe scoliosis
https://www.youtube.com/watch?v=ZA9Py_pB5J0    Had flatback syndrome, fixed.
https://www.youtube.com/watch?v=dqZFkS3_FH8  Had severe flatback syndrome with old Harrington rod fusion, treated anterior/posterior
https://www.youtube.com/watch?v=FLT2CPN2rZo  -- Patricia E -- also had severe scoliosis, but no Harrington rod.
https://www.youtube.com/watch?v=g9n2WPpaALU  -- Jeannette - from Wilmington, NC - also might be a good buddy.
https://www.youtube.com/watch?v=8O6pV8DmdVg  -- Connie a year postop -- doing well, training for half marathon.
https://www.youtube.com/watch?v=aqicY09vv5w   Pam - 60 yo- severe scoliosis, progressive.
https://www.youtube.com/watch?v=SsPEWJC4COg   Jeri from Franklin, NC 6 hours away, had a very severe scoliosis
https://www.youtube.com/watch?v=zhf5idBbvKQ  Elizabeth 1 year postop from severe scoliosis correction
https://www.youtube.com/watch?v=89DY8J_jMVE  One year postop, 47 yo with severe scoliosis
https://www.youtube.com/watch?v=NOPtR5VQAhY  John from Florida, 51, had severe kyphoscoliosis and obesity.  Now doing very well.
https://www.youtube.com/watch?v=Y7P6J5t6Bmc    60 yo Andrea had severe scoliosis and very poor quality of life.
https://www.youtube.com/watch?v=GNESt4QCIk8   Elva had anterior/posterior extension fusion, and tells about her recovery
https://www.youtube.com/watch?v=ZR1iIthdUrI    Debbie had horrible preop pain, with severe scoliosis
https://www.youtube.com/watch?v=Had-sWriicM  Andrea, 60yo had severe scoliosis, very poor quality of life


https://www.youtube.com/playlist?list=PLuKdsL3fqSh-BWSGZS3NPEK07NpfmdxLY  Collection of adult surgeries at Hey Clinic


Here are some Blog posts about Harrington Rod extension fusions, just searching my blog for word "harrington"


Hope these resources help!

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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