Back in action

Back in action

"My daughter Emily (now 20 years old) and I were both born with Larsen’s Syndrome, a rare disorder which affects all our bones, muscles and joints. While I can still walk short distances, Emily prefers to use a wheelchair full-time. Emily also was diagnosed at an early age with cervical kyphosis; her cervical spine was abnormally curved and thus had the potential to cause paralysis or even sudden death from an injury or her normal growth.  She was, of course, closely followed by orthopedic specialists throughout her childhood.  In 2006, we were informed that her spine was beginning to show evidence of compression.  Her primary orthopedist referred us to a spinal surgeon at a major NYC hospital and surgery was scheduled for the summer of 2007. But six days before the procedure, the surgeon called to cancel the procedure claiming that further tests deemed it to be too risky. He then referred us to a nationally respected out of state hospital where we consulted with two spinal surgeons.  Both advised that the only safe option was to fuse Emily’s spine from the base of her skull to her thoracic spine; such a procedure would leave Emily permanently unable to move her head and neck.  Believing we had no other options, we reluctantly prepared for this drastic surgery at the end of the 2008 school year.

 

But fate intervened once again:  we learned that our health insurance coverage was changing and out-of-network benefits would no longer be available.  Fearing for Emily’s safety if surgery was once again delayed, I embarked on a search for an in-network surgeon.  Thankfully, this time we found our way to the office of Dr. Andrew Casden at The Spine Institute at Beth Israel Medical Center.  At our first appointment he reviewed Emily’s X-rays and MRI’s and agreed that correcting her kyphosis would be very complicated and potentially dangerous.  We left his office without a clear plan but rather a promise that he would intently study Emily’s situation and consult with his colleagues.  He was clearly taken by Emily’s personality and intelligence, and was very motivated to correct her kyphosis without taking away too much more of her already very limited mobility.  At our next meeting with Dr. Casden, he showed us a 3D model of Emily’s spine that he had constructed, along with pictures of her MRIs on his phone, which he had sent out to top spinal surgeons across the country.  Because Dr. Casden was so thorough, we were overcome with the feeling that we had found the best surgeon for Emily.  He was very available to us during the planning stages of the surgery and did his best to ease our anxiety.

 

Dr. Casden performed Emily’s surgery in January of 2009 with assistance from Dr. Persky and Dr. Langer, colleagues he personally selected to assist him.  Despite the major risks, the surgery was successful.  During the post-operative period, Emily needed to be protected by a halo.  Though it looks like a torture device, we tried our best to view it as a protective “angel” and, to Emily’s credit; she handled this difficult experience like a trooper.  She wore the halo for 3½ months and when it was finally removed we were anxious to see her head move.  However, we were told this would take some time as all her neck muscles needed to get stronger after not being used while in the halo.  But I’m happy to report that by the time Emily graduated from high school in June 2009, she was moving her head and neck more than we thought she would ever be able to.  She started college in the fall of 2009 and today is half-way through her junior year. She plans to become an English teacher as well as use her experiences to advocate for the disabled.  She has traveled internationally with a special program for physically challenged young adults, and even rappelled off a mountain during the trip. (Sorry Dr. Casden!)  Our family now has the peace of mind we lacked during Emily’s childhood that her spine is secure and her future is safer.  We can’t thank Dr. Casden, his associates, and all the caring staff at Beth Israel Medical Center enough for this precious gift."

 

Ellen L.
West Babylon, NY

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