Scoli Mom Guilt

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.

Mom guilt
Scoli Mom Guilt can make the most confident of us feel blue.

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.

Jalopy
It may not be pretty, but can it get us there? We shall see.
Advertisements

WIN a Scoliosis Activity Suit through the Crooked Life Foundation!

crooked life 2

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!

 

Crooked life 1

Written by: Cynthia Beauvais

Photos used with permission

HOPE for Adult Scoliosis Patients (Part 3 of 3)

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!

Click HERE for more information.

 

HOPE for adult Scoliosis patients (part 2)

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!

sas study 2

HOPE for Adults with Scoliosis Pain

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.

sas-1.png
Visual representation of a patient in and out of the suit.

Your job responsibility, redefined.

self care

Lately, I’ve been working hard to slowly put routines in place in my life to take better care of myself.  I’ve given up on the dream of fast fixes – for any area of my life – although sometimes I still get down on myself for making such slow progress in what seems is all areas of my life.  Specifically, I’m working on honing my morning routine to add things that I feel are important, but that I typically don’t take time for because they are not urgent.  They are big picture things – like spending time in communion with God, working on my writing, which I have always wanted to do more of, and taking care of my body.  I’ve been in physical therapy for back issues (not Scoliosis related), and have started walking again, so that I can keep up with the family when we hike during our summer trips this year.  I sometimes catch myself feeling guilty – like I should be working or doing something more PRODUCTIVE with my time.  I can’t allow myself to just sit and enjoy a TV show once in a while – I have to be DOING something while I watch to justify it.  I should be doing more work on my business, my family, and my community.  But, maybe the truly important work has been this self care all along.

I’ve written about this subject before, but lately someone said something to me that made me rethink it – that time spent in relaxation is actually productive time.  What?  Yes, time spent in relaxation IS productive time because it allows our minds to unwind.  We are productively unwinding.  Time spent taking care of us is actually part of our JOB as a productive individual.  Because, as we improve ourselves and work on us, we can serve our families better, improve our business productivity, and be more productive overall.  We all KNOW we need to put the oxygen mask on ourselves first, but how many of us actually look at it as our RESPONSIBILITY?  Something on our never ending agenda?

It’s tough. We feel so many pressures.  And, when we have a loved one or child dealing with something like Scoliosis, it’s so easy to completely put our needs aside.  But, dangerous things can happen – we can burn out, we can become the martyr emotionally, or we can physically become unavailable to our family because we’ve forgotten about #1.  Our kids need us, our husbands need us, our jobs need us, our friends need us – but, the reality is that we need ourselves.  Nobody else is going to care for us – we are adults, and need to decide we are important enough to do it.  It’s not selfish, it’s our DUTY to our family to care for ourselves, too.  It’s part of your job as their caregiver.  I know that sometimes there are not enough hours in the day, but there are also lots of things we can say “no” to over time, and lots of less important things that crowd our day, our thoughts, our time.  Your children are busy, too, but they are not too busy to help with things around the house.  They may wear a brace or have physical discomfort, but they are still capable of taking more mundane things off your plate so you can focus on the big picture for the family.  It will actually fill them with confidence in their abilities.  Your spouse is also very capable, but you have to let go of certain things and let them do it their way (I know, super hard).  You can tell people no and tell yourself yes.  You can ask for help from those who love you.  It’s not easy, but it’s very worth it.  You are very worth it.

Never underestimate the Power of a Mom

My daughter convinced my husband and I to watch the popular TV series “Stranger Things”.  I won’t include any spoilers here, but in one scene, Winona Ryder, who plays a very determined Mom of a very unfortunate young man, hugs him and says, “I won’t let anything happen to you.  I promise!”.  As she said that, I leaned over to my husband and said wryly, “yeah, she shouldn’t make promises that she can’t keep”.  We both chuckled because we knew it would probably get worse for that family, but it kind of hit me deep.  I thought, “Well, when she made that promise, she probably really believed it.  She probably was ready to fight a battalion for her son, and had no plans to fail”.  Then I thought about how many moms have felt this extreme warrior protective nature at one or more times in their Mothering.  For me, it was when we got the diagnosis of Scoliosis.  I literally went into battle mode.  I researched, I prayed, I thought about things from every angle.  And, then when we went forward with what I thought was the best plan, I was ready to conquer every single obstacle.  When she came home in a shiny Spinecor brace, and I had 3 days to figure out how she could be independent at school while wearing the brace, I didn’t hesitate.  I pulled out my sewing machine, I cut, I sewed, and I put something together that would work for her.  It wasn’t pretty, but it did work.  I never doubted that I would be able to make it work – and I was right.  I’m sure each Mom reading this has their own story of their superpower moments in the lives of our children.  Sometimes we can conquer, but we are humans, and, unfortunately, sometimes we cannot.

When my daughter’s orthotist urged me to make my bodysuit invention available to the public, I hesitated.  He thought it could really help a  lot of people.  It was something I created in a warrior Mom moment and I wasn’t sure if it could really do any good.  But, he urged me and I decided to proceed.  In the early days of my patenting process, I shared the design with a brace manufacturer (that I will not name), figuring they would think it’s a great supplement to their brace.  But, to my disappointment, the head of the company wrote me that “I was just a Mom of one patient”.  The tone of the email (which I have kept for motivation) was that I was just a Mom, and I didn’t understand all the aspects of the situation.  But, I thought to myself – who BETTER than a Mom to soldier through a problem that involves her own child?  Who has a better motivation?  Who has a better understanding?  Nothing can overpower the raw determination of a Mom in fight mode for her children.  Dads can hold their own, too.  But, I still feel they fall short to Moms.  Sorry, guys.

So, if you are new in this journey – believe in your power.  If you are a veteran, share your stories below in the comments.  We are all on the same team – we are all warriors for our children.  And, we should have each other’s backs in battle.  I have your back, be assured.

super mom