This girl – #5 – she has been, and continues to be, my inspiration. I think back to all the mountains of fear that I used to stare at, afraid to climb. I think back to the worry – will she ever really, truly be OK? I suppose we all worry about our kids that way, but when your child has a condition like Scoliosis, you really take a scarier ride on the worry bus. My daughter was diagnosed at age 5, braced for 6 years, had surgery when she was 13. She’s been through so much – but, you can see, it hasn’t slowed her down. She is now a Senior in high school, and just finished up volleyball season. She was a setter for the 5th year in a row, and a team captain. She led her team well – communicating constantly, and always setting the best example she could. My daughter doesn’t play much with excuses, and, even with 3/4 of her spine fused, she was still complimented by coaches as being one of the best setters they have seen. It amazes me, really. We have now settled into a tiny bit of normal (whatever that means). The huge mountains of fear are mostly behind us, and she really never missed a beat. I can’t wait to see where her experience of Scoliosis takes her in the future.
What a summer! I feel like our heads have barely rested on our own pillows! But, it’ s been an amazing ride. It dawned on me last year that my baby girl is graduating soon (class of 2019) and that we needed one big, family adventure before then. My husband and I had never been out west, so I planned a 10 day excursion, where we speed-tripped through various parks and landmarks. We started by flying into San Francisco. We toured the city for a few hours (remember, I said this was SPEED touring). We spent the next day exploring Muir woods, just North of San Fran. Then we went to Yosemite, thankfully before they shut the park down due to fires. Following Yosemite, we went to LA/Hollywood, then Grand Canyon, then Zion National Park, and…finally…Vegas, from which we flew home. Whew! Lots of hiking, many times in crazy heat, sight seeing, TONS of steps on the fitbit. Also, LOTS of driving and good, quality family time. It had been nearly 10 years since I left my business (the real baby of the family) for such an extended time and I was very happy that my EIC Team back home took care of everything for me while I was away.
It was really great, but, after 10 days, we were ready to get back to real life. Real life can be real stressful, especially when dealing with Scoliosis. But, we have to find time to work in these adventures so that we have the peace of mind to deal with the daily grind. I was really grateful that my “Scoli Three” didn’t have any issues on the trip – between riding in planes, lots of time in cars, sleeping in a different bed every-other-night – I would have expected some flare-ups with their backs, but they did great. We did make our son take his brace as a carry on – we weren’t willing to risk the airlines losing THAT piece of luggage. He didn’t want to wear it on the plane, and, since he just wears at night anyway, we found a packpack that would fit the brace, and then put his carry on stuff in the middle of it. It fit just fine under the seat in front of him! If one of my kids were still full-time bracing, though, I probably would have told them to leave it in the hotel room for some of those hikes – they were so hot that those of us NOT in layers were cooking in our boots. It’s all about balance – and, I was happy to find some balance by really investing in a good chunk of quality time with the family. We can get bogged down in the day-to-day struggles, tipping the scales in our brains to stress overload. But, by consciously making the effort to plan in the time together and, by compromising just a bit on the daily routine, we can bring that scale back to balance.
Most Moms have experienced the big, bad, dark torment of Mom guilt at one point or another in her life as a Mom. It’s practically unavoidable. But, in the world of Scoliosis, when there are so many choices for our child’s path, we set ourselves up for a special brand-name Scoli guilt – and, possibly it’s successor – regret. I am kind of in a puddle of the mucky mom guilt right now – and I’m hoping it doesn’t turn into regret later, but it will be some time before I can tell.
I didn’t talk much about our latest bracing adventure for my son because it’s been much too crazy and emotional of a Spring for me (for many reasons). However, it’s past time for a recap. I’ll just start by saying that my son grew nearly 7 inches last year! No joke. His previous brace was way too small, but we all know that insurance only covers one per year, so we waited. Thankfully, his upper curve stayed in the high teens and his lower curve in the mid 20s, so I felt pretty good about how he weathered that growth spurt. However, we anticipate another big year of growth and the Doc wants him to keep bracing at night. Well, the dilemma we faced was this: due to insurance changes, we were looking at close to $5,000 out-of-pocket, plus travel expenses, to go to Luke at National Scoliosis Center. Now, let me just say that he is worth every penny and more, and I still highly recommend that families go there if they can. But, we were still faced with a dilemma. With the amount of growing years left, we could be faced with out-of-pocket expenses equaling a year or more of college. How do we choose? With our son’s curves being so low, could we forego the “Corvette” model brace for one that might still do the job and not cost us out of pocket?
I did some pretty extensive research and decided we would stick close to home this time and I thought that where we were thinking of going would still treat the Scoliosis condition in the 3D rotation. I really wanted something better than the traditional Boston brace. However, what we ended up with is essentially a Boston brace, with some additional pads put in to help rotation. Not really what I expected and definitely not nearly as comfortable as what we were used to from Luke’s braces. And, no doubt it is not nearly as effective. *sigh* My son is not very happy, but he’s tolerating it and he knows that we made this choice purely to manage both his curve and our finances as much as possible. We took a gamble, and we won’t know if it will pay off until our year is over. If his curve increases, we will definitely return to National Scoliosis Center – the quality just cannot be beat. But, it’s so hard not knowing. We want to give our kids the best of EVERYTHING, but sometimes we just can’t. Or, we can in the moment, but it would be at the risk of something else in the future. It bothers me how it seems that the best treatments for Scoliosis are also the most expensive because insurance companies don’t recognize the benefit of the newer and better treatments. And, the immensely talented Orthotists like Luke need to get compensated for their time and talents.
For me, it came down to this: when moving from point A to point B, both a corvette and a jalopy can get you there. The corvette may be more reliable and the ride smoother, but you’d have nothing to spend on a house when you got to point B. The Jalopy may emphasize every bump along the way and make you nervous that you won’t arrive safely, but, chances are, you will get to Point B and still have money left for a mortgage. OK, my son’s current brace is a little bit better than a Jalopy, but you get my point. Sometimes we Moms have to compromise – and, it kills us to do so. And, even if we know we made the best decision for right here and right now, we still worry – have we done enough? I guess I will see at his 6-month checkup. Until then, I can’t look back. I will just have to await the learning experience that is to come and trust in my prayers and my instincts as a Mom.
In the very small Scoliosis community, it is always nice to see people helping each other out. This is where Marce Kuhns comes in. She was diagnosed with Scoliosis at 12 years old, and started out wearing a hard brace. It was too painful for her, but the only remaining option was to wait and watch the curve progress. After 26 years of back pain and growing postural deformities, she found a life-changing rehab-based Scoliosis treatment . With this newfound hope, she began to share her story. Her blog, The Crooked Life, is a way for her to share her story and to encourage others who struggle with Scoliosis.
Marce didn’t just stop there, though. She continued to help others by starting The Crooked Life Foundation with her husband, Rob Kuhns. The Crooked Life Foundation has an initiative called “Project SAS 10”. This project’s goal is to provide families who need it with Scoliosis Activity Suits, which are lightweight, neoprene supportive suits that work with a patient’s natural body movements to stabilize the body and reduce pain from Scoliosis. Marce estimated that it would take a few years to be able to hand out 10 suits, so the project is aptly named “Project SAS 10”. So far, as of May 2018, they have given away 8 suits!!
Project SAS 10 is in action right now! The Crooked Life Foundation is doing a Scoliosis Activity Suit giveaway for suit #9 from now until May 18th. If you win, you get the suit, a consultation, fitting, and x-ray, which is a $1500 value. The winner will be announced May 20th. To find out more about this giveaway, go to The Crooked Life Foundation’s Facebook page or the Project SAS 10 page. Make sure you check out everything else that Marce does, and show your support!
If I haven’t made it clear already in Part 1 or Part 2, I absolutely LOVE the Scolismart treatment. For so many reasons. The Doctor who founded it (Dr. Morningstar) and those on his team (Dr. Dovorany, Dr. Stitzel, Dr. Siddiqui, and others) are all wonderful, caring Doctors who think far outside the box to find solutions to a problem, not just band-aids. They work hard to make their suits comfortable and they don’t compromise quality. And, the treatments really seem to WORK. And, they seem to have promising data to support helping to reduce pain in adults AND in post-fusion patients. This is truly amazing news!
This Week’s study is from 2017, and is called “Clinical outcomes of a scoliosis activity suit worn by patients with chronic post-fusion pain: 6-month case-controlled results.” by Morningstar, Stitzel, Dovorany, and Siddiqui. You can see the full text HERE. This study dives deeper into the effects of the SAS (Scoliosis Activity Suit) on Adults, looking at a population of post-fusion patients that approached the Scolismart clinics for treatment of pain for their Scoliosis. The Doctors used both pain scale measurements, quality of life measurements, and x-rays to compare results in patients after 6 months of treatment. The control group is a group of patients who approached the clinic for therapy, but that didn’t actually pursue treatment. The Doctors were able to get pain scale ratings for the control group, but not x-rays at 6 months. The assumption was that the x-rays would be very similar or, possibly worse, for the patients in the control group 6-months later. And, since the main concern was pain reduction, the x-ray results at 6 months are really just additional information, not necessary to the core of the study. The Doctors also separated the treatment group into three groups – the overall group, and then further into sub-groups, based on the type of surgery they had (Harrington rod vs. Pedicle screws)
The Doctors found that Cobb angles were improved in the treatment group overall, with more benefit to the Harrington rod patients. Really think about that – fused or bonded spines getting improvement in Cobb Angle! That’s amazing! Pain scores also went down for the treatment group, with the Harrington rod group again getting more benefit. And, the control group actually increased on the pain scale after 6 months. SRS (quality of life) scores increased for the treatment group overall. This is great news!
As I have stated in Parts 1 and 2, it is very difficult to get good research data in the realm of Scoliosis treatments. There are so many variables. But, I really applaud the Scolismart Doctors for their continued efforts to get data for us to mull over. The reality is that the scientific processes may not be perfect, but my opinion is that they are very solid. And, they definitely can give an adult patient hope when trying to decide if they want to try such a treatment. It’s not easy – the patients who get success have to do the WORK involved, but I have to imagine that the benefits are well worth it!
This week, I continue my three-part series of Scoliosis Activity Suit study reviews with the 2016 study “Radiographic, Pain, and Functional Outcomes in an Adult Post-Fusion Patient Using a Scoliosis Activity Suit: Comparative Results after 8 Months,” by Dr. Morningstar, Dr. Dovorany, Dr. Stitzel, and Dr. Siddiqui. You can find the entire study HERE. This study, as opposed to the study I wrote about in PART 1, is about just one patient. It’s a case study review of a 59-year-old female who had fusion surgery at age 19 and then, in her second revision surgery a few years later (in 1992), had the hardware removed. She started experiencing high pain levels about 5 years after the hardware was removed. When she came to the Scolismart clinic, she was in significant pain about 75% of the time. This is most likely something that many readers can identify with. When she was first fitted in the Scoliosis Activity Suit, she got quite a bit of correction while in-suit (about 5 degrees for both curves). She was diligent in her at-home therapy and went back a month later, at which point she told the Doctor that she wanted to use the suit for 2 hours per session, instead of 1. She was getting enough pain reduction that she saw the value of increasing her time in-suit. She also continued to do the exercises that she was given. Six months later, she came back for a follow-up. They took an x-ray after the patient hadn’t worn the activity suit for 24 hours, and her curves were both reduced approximately 20 degrees! But, most importantly, her pain and well-being scores both improved by 60%. These results are very exciting.
The authors acknowledge that this is just one patient and that more research is definitely in order to examine results in a larger population. And, they hypothesize that these results may not be able to be achieved in post-fusion patients with the hardware still intact. But, this is, again, hopeful for adult patients suffering with Scoliosis.
Hope alone can fuel people through a hard day, a hard week, a hard month. I hope that you let this fuel you if you are one of the ones suffering. And, remember that a case study of one person may not apply to you, but it COULD apply to you. If you are interested in learning more, or getting on an email notification list for the Scolismart direct-to-consumer release, you can click HERE and learn more. I really believe that the work the Scolismart Docs are doing will change the trajectory of Scoliosis. I know the Docs personally and know they genuinely care about obliterating Scoliosis. Check back next week for Part 3 in the series. Have a great week!
I am very excited to announce that my FAVORITE treatment for adults with Idiopathic Scoliosis pain, SCOLISMART, is very close to going direct-to-consumer with their Scoliosis Activity Suit (for adults only). This is going to open up amazing possibilities for Adults! Go HERE to sign up for notification of when they release this groundbreaking new program. In my personal opinion, this is THE BEST choice for adults with Scoliosis pain. My Spinecor readers might balk at that. Know that I still love and support Spinecor patients in every way I can and am thrilled when I hear of anyone getting relief from their Scoliosis, but I stand firm in this opinion. If you are choosing between the two, choose Scolismart.
That said, I am launching a three part series of the Scoliosis Activity Suit, where I will review the three latest studies done by Dr. Morningstar and his team of Docs. This week, I’d like to focus on their 2015 study from the International Journal of Clinical Medicine. You can find the entire study HERE. The paper is titled Pain and Radiographic Outcomes in Adult Idiopathic Scoliosis Patients Using a Scoliosis Activity Suit: An 18-Month Case Controlled Chart Review.by Mark Morningstar, Aatif Siddiqui, Clayton Stitzel, and Brian Dovorany. It’s a mouthful, but I’ll try to break it down for you here…
Let me first start by saying that there is a REASON why so little literature exists regarding alternative Scoliosis treatments. The data is very hard to attain. Think about it: there are so many variables, so many different cases, so many years over which treatments are performed. It’s a testing nightmare. And, it is expensive. That is why your Doctor will tell you that they can’t recommend these “alternate” type treatments – they have to base their recommendations on research, and the research just isn’t prevalent in this area. I feel that the Scolismart Docs have done a great job of getting us some data to help us make decisions. Is it perfect data? No – but it seems pretty scientifically sound, especially for something that is so difficult to get data for and I applaud them for continuing to fight the good fight to get us real information.
That said, this particular study followed 53 adult idiopathic Scoliosis patients for 18 months. It was a chart review – the doctors went back over their data on their own patients and compiled it into this study. As a control group, they used a study done by Marty-Poumarat, et al, which can be found HERE. The demographics for the two studies were close enough that Dr. M and crew felt that they could safely compare their data to that of Marty-Poumarat. The Marty-Poumarat study found that when an adult has a curve of 30 degrees or more at skeletal maturity, there is a 68% chance that it will continue to increase afterwards, at a linear rate. In other words, any adult with a 30 degree curve or greater can expect their curve to continue to get worse over time. Wow. So, Scoliosis does not end at Skeletal Maturity as most people are led to believe. Dr. M and crew wanted to see if their treatment put people ahead of the curve (pun intended) when it came to progression. They also wanted the patients to use the quadruple visual analog scale to rate their pain before and after 18 months of treatment, because pain is the #1 reason that Adults need Scoliosis relief!
The results were complex. I had to read the study twice to really grasp what was going on. One of the reasons it was so complex is that they broke the data down into curve type. This is very helpful because these Scolismart Docs know that different curve types produce different results. The data is all in the study, which you can look over for yourself, but let me just say – 100% of participants claimed either the same or a dramatic decrease in pain! Only one participant said his/her pain stayed the same. When it came to curve improvement, they blew the control group out of the water. Compared to the control group data of a 1.02 degree increase in 18 months, the thoracic group saw curves improve an average of 12 degrees, Lumbar group saw an average improvement of 10 degrees, and the thoracolumbar group corrected an average of 11 degrees. The double major curve group was the only one that a percentage (12.5%) showed a worsening of their curve, but this was only 1-2 degrees (which is the same as the control group). And, remember – everyone’s pain went down! My take on this study is that it shows a lot of hope for Adults needing Scoliosis relief. You have an excellent chance at pain reduction AND a very likely chance at curve improvement which, let’s face it, is almost unheard of for adults. Tune in next week for Part 2 where I review another SAS study.