DS has scoliosis

[Garga]

Monday:  routine well-child checkup required per homeschool laws (thank goodness for them).  Doc says his spine doesn’t look straight, get him an xray, may be scoliosis.  DS is turning 16 soon.

Tuesday:  we get the xray.  The xray tech shows it to us.  I didn’t expect to really see much of anything.  But.  But then we looked at the xray.  And it looks just like xray pictures of people with scoliosis.  I get a nasty pounding in my heart because it’s just scary when you see your son’s spine and it’s curved.

Tuesday night and this morning:  I read a bunch of stuff online about scoliosis. I don’t know the degree of curve (because only the tech talked to us so far), so I don’t really know how bad my son’s is.  From what I read, a lot of people have scoliosis and everything is fine.  

But...I can’t get my mind off of it.  DH doesn’t talk about stuff like this well.  Instead of letting me pour out my emotions/thoughts/feelings, he tries to comfort me with hollow statements, “Eh, it’ll probably be fine.”  Maybe.  Maybe not.  I don’t know and neither does he!

Yet, I still would like to hear people say, “Eh, it’ll probably be fine.”  But not DH who doesn’t know anything about it.  I’d like to hear from people who do and who *get* a mother’s worry.  Then again...maybe dh does know about it. It turns out dh has scoliosis, too, but didn’t know until last year when he had an xray at age 49.  SO, I do know in my head that someone can have scoliosis and be fine forever.  But I’m a mama right now.  A worried mama.  And I don’t really have anywhere else to go right now to fret about this with someone.

 

[Miss Tick]

Hugs! If he is still growing things can change and they don't know why or which way it will go. My dd was diagnosed with curvature at 11 or so, and then two years later they couldn't measure any.  So there is an anecdotal data point of hope for you!

[Kassia]

Big hugs to you.  It's so hard on us moms!  My dd has mild scoliosis but, fortunately, it hasn't gotten worse.  I get nervous every year when it's time to have her checked.

The dd of a friend of mine had surgery for her scoliosis and had to wear a brace.  She's doing great now and just finished her first year of college, has a boyfriend, had a fun summer job, etc.  

[Selkie]

Hugs! I would be stressed out, too!

I know two young women who both had surgery for severe scoliosis and are now doing absolutely great.

[gardenmom5]

my mother developed scoliosis - I suspect from the way she sat. (all the time, watching TV)  if it's very mild, yoga can actually help.

[itsheresomewhere]

We just went through this.  DS is 16 and it just showed up at his physical. The donkey of an ortho blew us off since we are doing g some genetic testing. Depending on the curve, if it is mild they might prescribe some core exercises.

[marbel]

Both my kids have scoliosis.  I don't remember my son's curve. He was on watch for several years, and actually this month is due for his last xray/checkup. He last went 3 years ago.

My daughter's curve is more significant, on the borderline for surgery. She was in a brace for a few years but it didn't help, though her curve seems to be stabilized. She is due in 2020 for her next checkup. 

Try not to start worrying yet.  :-) It's hard. I still worry about my daughter; her curve is quite pronounced in certain clothing (the waist-to-hip curve much more pronounced on one side) but is not endangering her internal organs and the doc doesn't expect it to. Still, I worry sometimes.

Hugs to you.

 

[Amy in NH]

My ds was diagnosed with adolescent idiopathic scoliosis 3-4 years ago.  He had an 11% curve on the first xray - you could see it on the xray.  They did a follow up xray exactly one year later, and the curve had increased only a tiny bit, but he had also grown A LOT in that year.  He had gone from a stage 1 hip to a stage 4 (out of 5) in one year - which, according to the specialist, meant he was almost done growing.  At that point, there was not much they could do - AND the slight curve he has was something they wouldn't treat anyway.  He's 16 now, and it doesn't affect him at all. 

If your son is almost 16, I would guess that he is almost done growing, too.  Probably his curve won't change much from here on, and they won't treat it.  If it had been noticeable enough for you to see in everyday life, it might be more concerning, but maybe not.  For a couple of years before his diagnosis I had thought my ds's shoulders were uneven when he was sitting in his computer chair, but I chalked it up to slouching while mousing. 

[Pawz4me]

DS19 has it. His was found when he was around 10 or so. He had to have a MRI to rule out a tethered cord and then he was tracked every six months (X-rays) for a few years to make sure it didn’t get worse during his big growth years. His didn’t. It never bothers him. I have mild scoliosis. It’s never bothered me a bit. 

[Suzanne in ABQ]

Another anecdote for you, based only on our experience:  My daughter has scoliosis, and she's fine.  

She was checked for scoliosis every year of high school, and showed no sign of it.  Then, she had a physical last year, at age 21, and there it was!  X-ray confirmed it.  She has scoliosis (12% curve, I think).  It doesn't affect her day to day life, except she has kind of a crooked gait (not noticeable to most people), and she needs to tell her dance instructors about it so that they don't expect things from her that she can't physically do.  Other than that, I don't think she pays it any mind.  I don't think there's any treatment short of surgery, unless you seek it from an alternative practitioner.  I remember having a chiropractor who was using traction to treat a boy with severe scoliosis.  I don't know if it helped him or not.  I understand some osteopaths can use manipulation to help scoliosis, especially if it is recent onset. Alexander technique might help, if you have a practitioner in your area. I wouldn't be surprised if acupuncture might help, but I haven't looked into it.  I haven't investigated options in our area because it really doesn't bother dd.  

On the other hand, sometimes scoliosis can be associated with other conditions. I hate to fuel your fears, but if you're wanting to know everything, you might look into Marfan Syndrome. (The Mayo Clinic website gives an excellent description).  It's a connective tissue disorder, and scoliosis is one of several characteristics that tend to present together (along with really long, thin arms/legs/fingers and hyper flexible joints, long face, narrow upper jaw with high arch, and nearsightedness).  You can probably think of several people who fit that description. Marfan usually doesn't cause any problems, but it can cause major problems with the lenses of the eyes and with the heart and aorta.  My daughter is in the process of being diagnosed (she has many of the characteristics, but it must be diagnosed genetically).  She's been checked by an opthalmalogist and a cardiologist, and her eyes and heart are fine, but the positive genetic diagnosis will be reason to monitor her more closely for problems in the future, especially with her eyes and heart.  If your son is an athlete *and* has these characteristics, you will want to check it out, and talk to his doctor.  If not, then just move on.  

I hope I'm not adding to your stress.  If you're like me, researching fills that need to be DOING something. 

[Edited to delete repeated paragraphs.  Not sure how that happened.]

Edited August 22, 2018 by Suzanne in ABQ

[almondbutterandjelly]

(hugs) My dd has scoliosis.  She wore a brace for a few months, did A LOT of physical therapy, ended up needing surgery and is now a year and a half post op, at age almost age 18.  It's a lot, but it is bearable and manageable.  And surgery actually turned out to be better than the brace in many ways, so don't be scared if it ends up that direction.  

[Carrie12345]

(((Hugs))) Dh and I were both dx'ed with mild scoliosis as kids. No intervention and no troubles.

Dd was also identified as having a curve and was supposed to be x-rayed.  I researched like a mad woman (including the horrors and no-big-deal stories) and felt comfortable delaying it based on her growth patterns and the dr's agreement that she probably was pretty much done.  Not only was it not worse at her next check up - no curve was detected.

[historically accurate]

My oldest dd wore a Boston brace for a year (from age 14-15). They found the curve (also at a well-child checkup) right after her 14th birthday. Her curve was about a 23. She was braced for a year, but her curve stayed stable so they took her out of the brace. This past year, at age 16/no brace for 1 year, she is sitting at 28 degrees. She is fine overall, but her growth plates haven't closed yet, so she's due for one more checkup next year. 

[SamanthaCarter]

One of my sisters and I have scoliosis. My sister is fine, I was not. I had a spinal fusion at 19, no complications and my life has moved on. It was 56 degrees at the time of surgery I think, causing pain mostly at bedtime. The only real complications of having a fused spine are compacted discs that made a labor epidural tricky if not impossible (I  knew ahead of time), and some atrophied muscles in my upper back, the ones that hold my head up (presumably I don't have to use those regularly with a fusion?). If I spend hours studying over books, I will get pretty severe muscle pain in my upper back that lasts quite a while. I call it "exam-week back pain." I do not run - I want to be gentle on the two discs I have left. 

[goldberry]

The one severe case I know started when the girl was very young and therefore progressed significantly while she was growing.  I know several others with scoliosis who only found out later in life, and none of them had significant problems.  I would be hopeful if it hasn't caused any problems by now at 16, it will probably be okay.  ((hugs))

[jewellsmommy]

Mine was identified at 14ish. It pretty much held the same. Doctors were not concerned with it. I had a chiropractor tell me that they have good results with improving posture and helping the muscles that are affected with scoliosis. It's not a "cure" but can make it a non-issue for under 20 degree curves. I had a few sessions, but mine wasn't bad to begin with.

[Ali in OR]

My wheelchair kid has it. Her ortho at Shriners kept track of it but wasn't too worried. When she aged out of Shriners last year she was done growing and the curvature was pretty stable having progressed from 19 to 20 or 21 degrees. She's a "do nothing" case.

A facebook friend posted her dd's x-rays with substantial curvature that required surgery. She grew an inch or two just straightening her spine! The first 6 months or so after surgery her activity was restricted but then she was back to her usual sports. Nothing fun, but people do get through the ordeal if it does come down to worst case.

[Crimson Wife]

I have mild scoliosis. The doctors just kept an eye on it as I was growing up and it never progressed to the point where it caused any issues. I recently started seeing a chiropractor for pregnancy-related back & hip pain. She said that she could see that I do have it but in her professional opinion, it wasn't a problem and the pregnancy is what is causing my discomforts.

[SamanthaCarter]

33 minutes ago, Ali in OR said:

A facebook friend posted her dd's x-rays with substantial curvature that required surgery. She grew an inch or two just straightening her spine! The first 6 months or so after surgery her activity was restricted but then she was back to her usual sports. Nothing fun, but people do get through the ordeal if it does come down to worst case.

Yes! I gained an inch and a half! 

[Garga]

47 minutes ago, Ali in OR said:

My wheelchair kid has it. Her ortho at Shriners kept track of it but wasn't too worried. When she aged out of Shriners last year she was done growing and the curvature was pretty stable having progressed from 19 to 20 or 21 degrees. She's a "do nothing" case.

A facebook friend posted her dd's x-rays with substantial curvature that required surgery. She grew an inch or two just straightening her spine! The first 6 months or so after surgery her activity was restricted but then she was back to her usual sports. Nothing fun, but people do get through the ordeal if it does come down to worst case.

 

12 minutes ago, SamanthaCarter said:

Yes! I gained an inch and a half! 

 

I’m going to still pray that he doesn’t need surgery, but if he ever does, the inches of growth would be a welcome silver lining.  We run on the short side, so I’m sure my son would enjoy gaining a couple of inches.  ?

[happypamama]

(((Hugs))) — of course you are stressed and worried. That’s what we do. 

 

You know where to find me anytime if a real life ear would be helpful. And of course we can grab the others for dinner if a night off would help you think about something else. 

[itsheresomewhere]

3 hours ago, Suzanne in ABQ said:

Another anecdote for you, based only on our experience:  My daughter has scoliosis, and she's fine.  

She was checked for scoliosis every year of high school, and showed no sign of it.  Then, she had a physical last year, at age 21, and there it was!  X-ray confirmed it.  She has scoliosis (12% curve, I think).  It doesn't affect her day to day life, except she has kind of a crooked gait (not noticeable to most people), and she needs to tell her dance instructors about it so that they don't expect things from her that she can't physically do.  Other than that, I don't think she pays it any mind.  I don't think there's any treatment short of surgery, unless you seek it from an alternative practitioner.  I remember having a chiropractor who was using traction to treat a boy with severe scoliosis.  I don't know if it helped him or not.  I understand some osteopaths can use manipulation to help scoliosis, especially if it is recent onset. Alexander technique might help, if you have a practitioner in your area. I wouldn't be surprised if acupuncture might help, but I haven't looked into it.  I haven't investigated options in our area because it really doesn't bother dd.  

On the other hand, sometimes scoliosis can be associated with other conditions. I hate to fuel your fears, but if you're wanting to know everything, you might look into Marfan Syndrome. (The Mayo Clinic website gives an excellent description).  It's a connective tissue disorder, and scoliosis is one of several characteristics that tend to present together (along with really long, thin arms/legs/fingers and hyper flexible joints, long face, narrow upper jaw with high arch, and nearsightedness).  You can probably think of several people who fit that description. Marfan usually doesn't cause any problems, but it can cause major problems with the lenses of the eyes and with the heart and aorta.  My daughter is in the process of being diagnosed (she has many of the characteristics, but it must be diagnosed genetically).  She's been checked by an opthalmalogist and a cardiologist, and her eyes and heart are fine, but the positive genetic diagnosis will be reason to monitor her more closely for problems in the future, especially with her eyes and heart.  If your son is an athlete *and* has these characteristics, you will want to check it out, and talk to his doctor.  If not, then just move on.  

I hope I'm not adding to your stress.  If you're like me, researching fills that need to be DOING something. 

[Edited to delete repeated paragraphs.  Not sure how that happened.]

You are in the same boat as us.  We are on the process of testing for Marfans and it’s other disorders that mimic Marfans. 

[unsinkable]

(((Garga)))

I'm praying for peace for you and that everything turns out OK

[mom@shiloh]

Here's my experience and maybe someone will find this helpful:

At a routine well child check when my dd was about 8 or 9, the doctor suspected scoliosis and sent us to a local hospital for an x-ray.  I was watching the x-ray with my younger dd, who looked at the picture and said, "Is it supposed to be all curved like that?"  (sigh).  No, no, it isn't.  ? We followed up with a orthopedic doctor who confirmed the diagnosis and told us to come back in a year.  One year later she had the follow up x-ray done by the orthopedic technicians who know how to position kids for correct x-rays and there was absolutely no sign of scoliosis.  The first x-ray had not positioned her correctly. 

To the op:  during the year that I thought my dd had scoliosis, I was surprised to discover that many people have it and have no ill effects.

[Murphy101]

My oldest was dx at 17 by a chiropractor after the pediatrician missed it at a well check just a month prior.  I’d been nagging at him for slouching for some time but we went to the Chiro bc his back had started hurting really badly at work. He had a very physical job and I figured it was probably a simple case of not lifting with knees kind of thing, kwim?

The chiro called him back and then asked me to come in for a minute and asked me to look at my son’s bare back. Which I’ll admit I probably hadn’t done in years bc why would I, right? Holy crap. I just about cried. It was VERY obvious he has a significant curvature. The Chiro did some work and ordered an X-ray but thankfully the advise for now is nothing drastic. He should never do anything jarring to his back such as certain sports or bungee jumping or whatever. He should still try to keep his posture as straight as possible and where a back support brace when doing heavy work (which he never does bc he hates it) and he goes in for adjustments very regularly and probably always will. Ideally he would eat healthier and build muscle to support his frame. But he is 23 and doesn’t. He is very tall and very super thin, think C bent wire build, and avoids fruits and veggies and pasta like they are the plague. I’m pretty sure his core diet is cheeseburgers and chips and Twinkies. At home he will eat whatever meat I make and not much else. If that. Drives me nutty. 

But alas, he is 23 and I can’t make him do much.  

Don’t get me wrong. He is a great kid. He works hard, helps everyone as he can, is fairly responsible with money and like 90% is smart enough to listen to his mama who loves him .... but I’m a mom dammit and I worry about his scoliosis/future health.   

[Murphy101]

Also, from what I’ve learn since. My story is not unusual for boys. Girls tend to eat dx much younger bc they go through puberty younger and it’s that huge growth spurt that really makes scoliosis stand out and become an issue. Since many boys are late bloomers and start later than girls anyways, it’s not unusual for boys to not get dx until 16-22.  And even though it’s supposed to be routine in checkups, many times girls are checked at 11-14 and of course it’s not as apparent in boys at that age. So even if boys get checked, they need checked again in later teens and usually don’t get that. 

[ElizabethB]

My MIL has it, so bad she needed a brace when she was younger and they clearly saw it just looking at her.

She has never needed surgery and as long as she goes to occupational therapy a few times a year and does exercises at home, she has very few problems.  She went for years without any OT when she was busy with kids and work, but she had a bit of pain and problems then, with the OT, no pain.

[Murphy101]

Ugh. No one ever mentioned Marfan to me. Or anything really. They just sorta shrugged and told me what I posted previously. 

Great. Add to list of things to nag son about. Chances of him being willing to go to a dr just to rule out or find out bad news? Zero. I can hear it now. “I feel FINE, so why do that?”

Because we are mortal beings my dear son, who won’t always be 23, that’s why. 

?

[itsheresomewhere]

35 minutes ago, Murphy101 said:

Ugh. No one ever mentioned Marfan to me. Or anything really. They just sorta shrugged and told me what I posted previously. 

Great. Add to list of things to nag son about. Chances of him being willing to go to a dr just to rule out or find out bad news? Zero. I can hear it now. “I feel FINE, so why do that?”

Because we are mortal beings my dear son, who won’t always be 23, that’s why. 

?

Besides genetic testing, there are three free, easy tests that they use to see if more testing is required.  Arm span longer than height and two hand tests.  Look up the hand/fingers test for Marfans as when I describe it to you it might not come across in print correctly.  Doing those might bring you a bit of relief for a few minutes.  I almost asked  the one specialist “ really, I am paying for these tests”.  When you see them, you will understand.lol 

And I bet you and the other kids try those tests too. We came home and each one of us were doing them.  DS is very impressed with himself on how he can successfully do each one.

Edited August 23, 2018 by itsheresomewhere

[kbutton]

My whole family has some nearly imperceptible scoliosis (entire immediate family and extended family on both sides--multiple generations). 

My son has scoliosis due to Marfan Syndrome, but it is mild and monitored (two curves--11 degrees and 13 degrees) with some winging on one scapula. He did have a check with an orthopod, and we were told that there is often some forward and back rotation besides the side to side, and they look at both when they determine a course of treatment, watch and wait, etc. What has helped my son:

• careful chiropractic--our chiropractor found the scoliosis long before a ped had checked and before we had a Marfan Dx
• Physical Therapy--this is a really big one! 
• OT--we had a Mary Massery trained OT, and our new OT is getting trained. MM trains both OTs and PTs and does a lot with ribcage anomalies and scoliosis. NOTE: Our PT actually has a child who sees MM as a patient, and he is very, very pro MM for this sort of thing. http://www.masserypt.com/

I am going to add some information on the Marfan/Connective Tissue Disorder front below in case it helps...

On 8/22/2018 at 1:01 PM, Suzanne in ABQ said:

On the other hand, sometimes scoliosis can be associated with other conditions. I hate to fuel your fears, but if you're wanting to know everything, you might look into Marfan Syndrome. (The Mayo Clinic website gives an excellent description).  It's a connective tissue disorder, and scoliosis is one of several characteristics that tend to present together (along with really long, thin arms/legs/fingers and hyper flexible joints, long face, narrow upper jaw with high arch, and nearsightedness).  

1

Here are the actual Ghent criteria for Marfan: https://www.marfan.org/dx/rules

19 minutes ago, itsheresomewhere said:

Besides genetic testing, there are three free, easy tests that they use to see if more testing is required.  Arm span longer than height and two hand tests.  Look up the hand/fingers test for Marfans as when I describe it to you it might not come across in print correctly.  Doing those might bring you a bit of relief for a few minutes.  I almost asked  the one specialist “ really, I am paying for these tests”.  When you see them, you will understand.lol 

And I bet you and the other kids try those tests too. We came home and each one of us were doing them.  DS is very impressed with himself on how he can successfully do each one.

4

Here is the whole list: https://www.marfan.org/dx/score

If you expand the + signs, each feature is described. 

There are other related disorders, but if someone has high suspicion for Marfan Syndrome and sees a good geneticist, they will look at the whole picture for a differential diagnosis.

 

[Garga]

10 hours ago, Indigo Blue said:

Garga, please don't drive yourself crazy worrying about Marfan Ssndrome! Many, many people have a few of the markers that are on the checklist for diagnosis. It is quite common to have a Marfanoid body type but no Marfan Syndrome. Marfan Syndrome is very rare in the first place, and it's even more rare for someone to have a spontaneous mutation, that is, no one else in the family has it. 

We went through all this in my family. My son has many, many markers. I had never heard of Marfan syndrome until my son hit puberty and his chest wall caved inward as he grew taller. Since he had so many markers, Marfan syndrome had to be ruled out. He also was having POTS-like symptoms and his hands and feet would "blanch". I literally made myself sick with worry. It took a long time to get an appointment with the one and only geneticist in our city. It was ruled out along with other things such as EDS. The specialist said there was something going on, but at this time he just called it "unspecified" and there didn't seem to be anything to truly worry about. My older son (then 18) had a spontaneous lung collapse (happens in tall, white, young males). Younger ds needed major surgery to correct his chest wall. And I have scoliosis, and one side of my pelvis is smaller than the other. Bone and structural abnormalities seem to run in our family. Yes, it is something to do with connective tissue for sure, but it's nothing that will be life-threatening.

I'm sure if you think about other family members, you will realize they also have some type of oddity. My mom has a bent septum in her nose. It goes on and on. Think of your family. Is anyone else flexible? Bone abnormalities in other family members? You absolutely have to meet all the criteria to be diagnosed with Marfan. At your son's age, if it were Marfan, chances are pretty high that you'd already know something is wrong.

The most important thing is to check the aortic root (ultrasound) and get a good eye exam to check for lens subluxation. This is just to be thorough......scoliosis is SO common....and if you have another marker or two, no need to worry. It's soooo common. And again, by now, if it were EDS or Marfan, there would be serious things popping up. 

I wanted to post because I worried so much and just knew ds had it because he could check so many things off. But his heart and eyes are fine. He is just very Marfanoid. Don't worry like I did...please don't. My dh was like yours and thought goodness, he'll be fine. I was online all the time freaking myself out. This condition is SO rare, and spontaneous mutations are even rarer. Please get it ruled out, but try to relax until then!!

See? My son LOOKS Marfanoid, is very hypermobile, can check off so many markers including pectus excavatum, was tested, and he doesn't have Marfan syndrome! Hope this makes you feel better.

Thank you very much for your reassurances.  Looking at everything, I don’t think he has it.  I’m going to table that thought for now.  It just doesn’t seem to fit him when I read about it.

[Harriet Vane]

You've gotten a lot of great input and advice on this thread, so I will just add a little bit about what has made a big difference for me. I have scoliosis, diagnosed when I was in junior high, and I struggle with chronic pain due to the scoliosis and EDS.

The number one gamechanger for scoliosis is exercise, especially core and upper body. Regular strength training is an absolute must. This helps keep the curve from getting worse and more importantly, it significantly decreases pain. Embrace real exercise as a lifestyle.

There have also been great results from hanging. Literally. Simply grasp a bar and hang, keeping the head straight and neutral. Do this a couple times a day. You can purchase doorway hanging apparatus easily on Amazon or other sources. This is especially effective for children who are still growing.

I also recommend chiropractic care as part of scoliosis management.