Dear Janesi Comfort,

My daughter received a lovely Janesi Robe when she was in the PICU last month. It was so soft and made so beautifully. I love the story behind this lovely product! Everybody deserves a little luxury when going through an illness, surgery or recuperating at home. May everyone be wrapped in love during tough seasons of life.

~Steph

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Here is her daughter's scoliosis story:

L(Name withheld):

It was at L’s 11-year annual exam that her pediatrician first discovered an abnormal curvature of her spine. Soon after, she was given the official diagnosis of Idiopathic Scoliosis by an orthopedic surgeon. At that time however, we were advised to simply take a “wait and see” approach, which, ultimately, resulted in where we find ourselves today -- with her scoliosis having progressed to where she is no longer a candidate for bracing or any of the other traditional corrective measures.

This past March, at L’s most recent annual visit to the orthopedic surgeon, we were told that her S-shaped Thoracic and Lumbar curvatures had advanced to nearly 50 degrees, and that her spine had rotated to a total of 12 degrees. Unfortunately, at L’s appointment prior to this, we were told that since she had stopped growing, it was not expected that her curvature would continue to progress any further. Since that time however, we now know that her curvature did, in fact, get worse -- and that the deterioration will continue to persist at a future rate of 1-2 degrees per year if nothing is done to correct it.

Scoliosis is a curving and twisting of the spine that affects only 3% of the population — but for many within that 3%, including L, the severity of the curvature, and the pressure put on the lungs and other organs can cause a wide array of painful and debilitating symptoms. The typical reconstructive procedure that is recommended for such patients is the standard Spinal Fusion. While we did initially consider having L undergo this surgery, we quickly began to look into other options as it is very invasive. It often results in tremendously limited flexibility and a severely restricted range of motion for the patient, including debilitating levels of pain throughout the body.

After considering Spinal Fusion for L, we were not reassured enough with its typical long-term results, or with the chance of such an unfavorable outcome. That said, we decided to search for other options, only to quickly realize how limited those other options were, largely due to the fact that L had stopped growing.

The day-to-day impact for L in all of this is that she lives with such a level of constant pain and fatigue. We struggle to believe she even remembers what life without pain is like. However, for anyone unaware of the severity of L’s Scoliosis curvature, they would never know that she endures such an intense level of pain on a regular basis, as she works so very diligently to maintain a strong core and good posture. Also, thanks to her commitment to her Scoliosis Pilates, she continues giving her body the most support she possibly can -- even to the point of continuing to participate in so many activities that she loves, including theatre, for the past many years. Scoliosis surgery is not in any sense a cosmetic surgery nor an aesthetic procedure of any kind. Rather, the goal of Scoliosis correction is strictly for the patient to regain their lost mobility, to protect their entire body structure and organs from being adversely affected, and ultimately, to give them the chance to once again live a life free from the burden of chronic and constant pain.


L’s Best Option:

In our pursuit of another option besides the standard Spinal Fusion, we were so thankful to learn recently about a surgery that exists to correct this problem in a manner which is far less invasive and with far fewer drawbacks and lifelong side effects. This surgery is called Anterior Scoliosis Correction (ASC). There is only one place in the US currently performing it; The Institute for Spine & Scoliosis in New Jersey. We were drawn to not only their innovative and all-encompassing approach to effectively treating scoliosis, but also their depth of compassion and personalized attentiveness they exhibit for every single patient under their care. Needless to say, it was at this point that we finally felt as if we were beginning to see some light and feel some hope again -- along with a renewed sense of confidence that a straight, de-rotated spine and complete, pain-free mobility truly could be L’s once again.

In terms of the benefits of ASC for L, as opposed to the traditional, and often severely limiting Spinal Fusion, ASC surgery spares the back muscles from being cut and the spine from becoming permanently and irreversibly fused. In this way then, and in addition to the primary corrective procedure of ASC, it also makes possible the chance for additional enhancing work to be done on the spine if future advances in Scoliosis correction technology become available down the road. The way this is possible is that ASC uses screws which are placed into each vertebral unit, along with a cord that is attached to each of the screws. The back is then straightened, while the screws are tightened to the degree necessary for the correction of the specific curvature of that patient’s individual spine. This allows the doctors to literally ‘untwist’ the spine, resulting in not only an immediate improvement as a result of the surgery, but also allowing for continued improvement long after, quite similar to the effect of braces on one’s teeth. The surgery itself takes between 6 and 8 hours, and is generally followed up with physical therapy 2 - 3 times per week for several weeks, including regular core-strengthening exercises such as the Scoliosis Pilates that L has already been taking part in. It is important to note that ASC surgery is only performed by a total number of 4 doctors in the entire world -- of which, L’s would be at St. Peter’s University Hospital in New Jersey by the above-mentioned amazing team of doctors that we personally consulted with this past August. If you are interested in learning more, or know of someone who you think could benefit from learning about this amazing procedure, the following link features great information on the surgery and the nature of the technology that makes such a procedure possible.

https://www.youtube.com/watch?v=yY_53otbPoM

The pioneering surgeon of the ASC procedure, Dr. M. Darryl Antonacci, has this to say about the innovation and ingenuity encompassing this cutting-edge procedure. “For 40 years Scoliosis has been treated with metal rods coming from through the back of the spine with a lot of muscle disruption. Anterior Scoliosis correction (ASC) surgery comes in from the side and instead of a metal rod we put in a flexible cord. The flexibility of the cord allows you to correct the curve and maintains flexibility.”


In summary ~ as parents we do everything we possibly can for our children! We protect them with our very lives and advocate for them with all we have ~ and we move heaven and earth to help them when they are in need. And while we know that this type of surgery is a huge decision, we also know now after lots of research, that it is truly L’s best hope. Her curvature is continuing to worsen even as we speak, to the extent of 1 - 2 degrees per year if left untreated, which will inevitably result in an even further worsening of her symptoms, something that is hard for us to fathom given the pain she is already experiencing.

Thank you from the bottom of our hearts for coming alongside us in this journey of ours, and for being a part of this dream-come-true for L and our whole family!

Post Surgery Update

“L continues to amaze me with her recovery and is healing beautifully. 14 days post op and L's spine is already remarkably better! Her spine will continue to improve as the internal swelling diminishes and physical therapy can happen. Her father and I will never forget the care, love and expertise of Drs ABC - they are phenomenal in every way. Thank you, again friends for cheering L on!”