Well, I have a long story to tell for those that want to read it! I must say that while I definitely never like to ask for help, and was resistent to setting up this account, I DO look forward to spreading education and awareness about scoliosis to those that have no idea what it entails. Early detection and treatment beyond the usually recommended "wait and see" is key to avoiding what we are dealing with at the moment. If only one parent with a child that is in the early stages of scoliosis can learn about Schroth Therapy, or the options you have in the early stages that we did not know about, I'll be okay with the feeling of unsettle that I have in asking for help for him.
The amount I have put above is for the cost of the brace design, manufacturing, and fitting while we are there, as well as time slots in the clinic with the doctor, a 3D scan, therapy and travel expenses to Boston, minus what we have saved so far.
I really didn't want to ask for help, but every day that I see him in his current brace, following the orders and being compliant even though it's uncomforable and restrictive and causes him some pain, and I know there's this other way ... How can I not do whatever it is that needs done to get him there before he reaches a "surgery curve"? So here I am.
Jimmy is our 13 year old son. He's a pretty great kid! He loves cars, and has a goal to go to RMU for engineering so he can become an automotive engineer. He likes spending time with his family and friends, going to Kennywood, reading comic books, and anything car related. Most of all, he loves hockey! He plays dek hockey in the summer but his number one love is ice hockey. He plays as the goalie and he can't imagine not being able to do that!
Jimmy was diagnosed pretty early, at 6 years old, with scoliosis. His pediatrician was checking his lungs on his back when he had pneumonia, and he felt that his shoulders and shoulderblades were noticeably uneven. We were sent for an x-ray, where is was determined that he definitely had a significant curve in his spine. At that point there was not much to do about it that we knew of, and it did not affect his health or activity level. We were told to monitor it yearly.
When Jimmy turned 8 years old, the curve had increased and we were told to take him for an MRI to ensure that nothing else was causing his curve, such as a growth or abnormality. Thankfully there was nothing in there that shouldn't be, and he was officially diagnosed with juvenile idiopathic scoliosis. We were told that with his age we should again just monitor closely with xrays every 12 months.
At his 12 year visit, his curve had continued to increase, but still we followed a "wait and watch" protocol. He was at a 15 curve in his thoracic and a 12 degree lumbar with a rotation of the spine in the middle. These are not actually numbers to make anyone panic. The problem is that he was 12 and hadn't even hit a major growth spurt yet.
I didn't realize the problem with the wait and see until just recently when we visited the orthopedic doctor and had a full spine x-ray done and found out that his curve progressed a lot more than any of the previous visits. In between the 12th and 13th year, he was now at a 21 and 25 degree curvature with a spinal rotation.
Jimmy's head tilts to one side, one shoulder is lower than the other, and his hips are out of line with one another. This causes headaches, muscle soreness in his back and neck, fatigue and takes away the ability to do physical activity for long periods of time without having to sit out and take a break. It's hard to see the disappointment he feels when he can't make it through the entire air show (he has loved planes since he was a baby!) with his friend without having to sit down and take a break beacuse his back aches.
Left untreated, his curves will progress. The problem for curves that get bigger is that eventually they can impact lung and heart function. The spine more or less pushes organs out of the place they are supposed to be and can cause problems like restrictive lung disease and physical issues with walking, running, being active without pain as he reaches maturity. Jimmy loves being a hockey goalie and playing dek hockey with his friends and going to the gym with his dad. We can't imagine how it would be for him to not be able to do these things any more.
At current, Jimmy has been given a back brace that is to be worn 21 hours a day. It squeezes his midsection, rib cage and hips together to hold the spine in place. It is just as barbaric as it sounds, but he understands that without intervention, surgery will be his only option to keep his curves from progressing to a point that it will impact his lung function as well as causing constant pain and the loss of ability to participate in sports, etc.
We are complying with what's been suggested at the moment, but in my hours and hours of research, I found that this brace he has now comes with it's own set of problems. The main one we worry about is core muscle atrophy. From wearing the brace for two (possibly more) years, at 21 hours a day, his muscles in his abdominal wall will not be working on their own the way anyone else's would. The brace does that for him, leaving the spine weaker when you're finished with it. It might be straighter than without it, but weak, sometimes leaving permanent damage. Many times, it doesn't even work at all which leaves surgery as the "fix" for the issue.
I tend to be a little but stubborn and am not willing to accept these as our only options. I took to the internet, talking with other parents, and phone calls around the country, looking for options and researching those options. There is good and bad news. Bad news? Nothing is guaranteed. (what is, in this life, anyway, though?) Good news? Jimmy's curve is just before, just under the line, for the best outcome with surgery alternative treatment, like right now!
A 30+ curve does not typically see good results and he's currently at a 25-29, depending on how much it's already changed since the last x-ray. We seem to have come to this place of being in a good spot of growth development, as his growth plates still have room to go. For some reason, being a boy also helps, so we got lucky there. His risser is a 1, which means he has much more growing to do and puberty has not arrived yet! This is great when it comes to helping with his issues!
The treatment we found originates in Germany. The doctor we are working with is in Boston, so Jimmy and I will have to travel there for a week or so to get his new brace. This brace (called a Gensingen) is completely different from the kind he has now and lacks the side effects of his current one. The Gensingen brace, along with a special kind of therapy that he will start this coming week here at Children's, has worked for so many families that I have talked with!
The therapy is called Schroth Therapy and is specific to scoliosis patients. The doctor in Boston will send Jimmy's 3D scan to a doctor in Germany (Dr Weiss) that will design Jimmy's brace specifically to his own curvature. Dr. Weiss is the grandson of the woman who invented Schroth Therapy (Katharina Schroth) and intended for them to go hand in hand to not only try to stop the curve from progressing, but to REVERSE some of the damage! This is not the goal of the current treament we have been prescribed and provides so much hope for Jimmy's future! I've talked with patients, asked doctor's opinions and looked into so many things and this is without a doubt a great fit moving forward and keeping him healthy and active with the least risk of him having to have full spine surgery in his late teens.
To parents who suspect that, or have been told that, their children have scoliosis but they want to wait and see. Please look into other options. In my research I found out that last year, when Jimmy's curve was a 15 and clearly wasn't going to stop progressing, we could have done a soft, nighttime brace and stopped the whole thing. Now, he's as risk for full spinal surgery with rods and bolts, or, without surgery, a lifetime of pain or risk of restrictive breathing. That's not a fun place to be in. I don't want that for any of you. Please look into early detection/treatment if you can. The pressure alone of having to make these decisions is not even right, though I know many have it worse and it really could be worse, this could have been prevented!
Some have asked for the mailing address. It is
795 Becks Run Road
Pittsburgh, PA 15210
Here are some links to some of the information that may be helpful to anyone curious about scoliosis or that may want to look into treatment for their own children.
Dr. Moramarco (In Boston)
Video with Dr Weiss from Germany (brace designer)