Scoliosis?

[matrips]

What can you tell me about your experience with its progression and treatments that worked?

Two of my teens were just diagnosed with mild scoliosis.  My primary care said the usual thing is to just wait and see for mild cases, but I plan to see an orthopedic to try and actively treat it.  My sister has a pretty bad case of scoliosis now, in her 40s and it causes her problems.  The doctor said she likely started when she was a teen. I don’t want my teens backs to worsen if there is something g to help prevent that. I’ve read of braces and of exercises. But this is all brand new to me.

[MEmama]

When DS was diagnosed with a mild case as a preteen (?) his doctor gave the same advice. It resolved on his own. The doctor said it’s quite common at that age.
 

DS is very athletic but idk if that affects the spine or not (I mean, of course it does but idk for scoliosis specifically)

[Pawz4me]

I think all scoliosis starts as teens or older tweens, doesn't it? That's when DS (now 22) was diagnosed. We saw a pediatric orthopedist and had x-rays every six months for several years to make sure his degree of curvature didn't worsen. They also ordered an MRI to rule out an underlying issue (that I have now forgotten the name of), apparently because idiopathic scoliosis is much more unusual in boys than girls. His degree of curvature never progressed, and so far it doesn't seem to bother him. I don't believe any doctor will agree to bracing unless the degree of curvature warrants intervention. DS was referred to a PT for a muscle imbalance, but I don't recall if that was specifically related to the scoliosis or not. Doing the recommended exercises fixed it.

I don't recall ever being told as a child/teen I had scoliosis, but I was diagnosed with it as an adult. As far as I can tell it doesn't bother me. Sure my back hurts sometimes, but as far as I can tell it's related to things other than scoliosis (arthritis and IBS flares). 

Edited June 8, 2021 by Pawz4me

[rebcoola]

Just watching and waiting ODD has slightly improved over the last year and half.  From like a 14° curve to 12° so unless she has a big growth spurt is likely ok.  We have a big family history of scoliosis with multiple relatives having been braced and have surgery so we were worried.  But Covid hit so even if we had wanted to do pt or chiro regularly it wasn't possible and it seems to be working out.

Edited June 8, 2021 by rebcoola

[Arcadia]

My ex-classmate and ex-bf had braces in middle school. They were both over 6 feet tall and their doctors were worried they would be permanently hunch without braces. 
 

I was suspected of having scoliosis as a teen. That was ruled out but I do have hard tissue that shows up at every MRI.  I do have uneven shoulders which straightened somewhat by using backpacks for school and hiking. 

[Katy]

I was told it was mild as a child, maybe 10 or 11. I still have it, it's still mild.

[stripe]

I recommend seeing a pediatric orthopedist, who may want to follow your children and get regular x rays until they are nearly at full height. If possible get x rays with lower radiation since they are large x rays performed often. (Some hospitals have them.) Then they can advise what treatment, if any, is recommended and keep an eye on things.

[Harriet Vane]

I have "mild" scoliosis, diagnosed when I was in junior high. It is one of the things that contributes to my chronic pain. It also contributed to the development of bone spurs on my spine and also spinal compression.

"Wait and see" is the worst possible approach to scoliosis. It is true that some things straighten out with growth. However, you can increase the chances of avoiding pain like mine with two simple things:

--Hang every day for a little while. Literally grab hold of the doorway or monkey bars and hang there. 

--Embrace strength training and also vigorous exercise to develop strong back and core muscles. Weak muscles simply do not support the spine well. Just pick something and make it a lifestyle. Swimming? Volleyball? Basketball? Even yoga helps enormously. Do it for the long term, not just for 6-12 weeks as you would get in a physical therapist's care. 

[Condessa]

1 hour ago, Pawz4me said:

I think all scoliosis starts as teens or older tweens, doesn't it?

My son was six at diagnosis.  Of course, maybe his case doesn’t apply since his scoliosis turned out to be a secondary effect of another condition.  His specialist does see other kids his age, though, because he mentioned that the bracing has been easier on his other littler patients—he said they like to show off their braces to their classmates, while the teens tend to want to hide theirs.

Generally they don’t refer kids to an orthopedist unless/until it reaches a curve of 20%.  My son was at 30% when he got in, and was fitted with a back brace.  At the time they were saying it might be 3-4 years in the back brace and then no longer necessary, or he might require it 12 years until around 18 when they were confident he wouldn’t be growing anymore.

In a silver lining, though, his scoliosis dramatically improved after his tumor resection surgery.  He will likely be done with the back brace at the end of this month, having only worn it for about half a year.

[matrips]

2 hours ago, stripe said:

If possible get x rays with lower radiation since they are large x rays performed often.

The orthopedic is a a pediatric one associated with the children’s hospital, so I hope that is an option.  I will be sure to ask. Thank you 

[matrips]

2 hours ago, Harriet Vane said:

Wait and see" is the worst possible approach to scoliosis. It is true that some things straighten out with growth. However, you can increase the chances of avoiding pain like mine with two simple things:

--Hang every day for a little while. Literally grab hold of the doorway or monkey bars and hang there. 

--Embrace strength training and also vigorous exercise to develop strong back and core muscles. Weak muscles simply do not support the spine well. Just pick something and make it a lifestyle. Swimming? Volleyball? Basketball? Even yoga helps enormously. Do it for the long term, not just for 6-12 weeks as you would get in a physical therapist's care.

I’m not a fan of wait and see, but it was encouraging to read stories from those whose curvature did not worsen.  

I would prefer for them to feel like they have a little control over long term results, and be informed about exercise and what helps and what doesn’t and why.  So I will definitely ask the orthopedic about that.  They have started enjoying working out, and we have an area in our garage for that. Does the spine curve due to lack of support?  I’ll have to read up on why it curves and why it worsens, or doesn’t.

[matrips]

2 hours ago, Condessa said:

In a silver lining, though, his scoliosis dramatically improved after his tumor resection surgery.  He will likely be done with the back brace at the end of this month, having only worn it for about half a year.

That’s wonderful!!
 

Why/how did the surgery improve the scoliosis?

[kbutton]

My DS 13 has has scoliosis for quite a long time. His is not to the point of needing a brace, but he's at an age to keep track of it due to growth spurts. He has a connective tissue disorder that makes scoliosis quite likely. 

PT (with homework and sustainable exercises after PT is over) and very gentle, careful chiropractic has been great for stabilizing his scoliosis and helping with symmetry.

Regarding the hanging--that might be okay, but I would encourage anyone with scoliosis to familiarize yourself with conditions that can cause it and rule those out. My son's shoulders come completely of the sockets, so he is not supposed to hang unless he can keep his shoulders stable simultaneously (and he can't).

Some other things to look for with scoliosis that can be concerning: https://www.marfan.org/dx/score   If you expand the plus signs, it tells what each thing means and how to check it. 

 

 

[Condessa]

46 minutes ago, matrips said:

That’s wonderful!!
 

Why/how did the surgery improve the scoliosis?

His scoliosis was caused by the pressure from the growing tumor inside his spine.  The surgery removed a large portion of the tumor and relieved the pressure.

 

ETA: This is not something that parents of kids with scoliosis need to worry about, unless their scoliosis is accompanied by neurological symptoms.

Edited June 9, 2021 by Condessa

[Harriet Vane]

2 hours ago, matrips said:

I’m not a fan of wait and see, but it was encouraging to read stories from those whose curvature did not worsen.  

I would prefer for them to feel like they have a little control over long term results, and be informed about exercise and what helps and what doesn’t and why.  So I will definitely ask the orthopedic about that.  They have started enjoying working out, and we have an area in our garage for that. Does the spine curve due to lack of support?  I’ll have to read up on why it curves and why it worsens, or doesn’t.

Of course it's encouraging to know that often curvatures resolve with growth. When our children face challenges like this, we want to know there is reason to hope it will all be okay.

I was responding more to the standard medical advice to wait and see. I am personally frustrated with doctors who give that advice when in reality they should be advocating for vigorous exercise through the growing years to strengthen the back and core. I think the standard medical advice for this should change.

I will be honest--I do not know what causes scoliosis, though my bet is that there are multiple possible contributing factors. My guess is that some factors are more easily addressed than others. Either way, exercise is one thing that can only help. I'm glad you are so supportive of your child both in seeking answers and in setting up an exercise area in the garage.

It's a great idea to ask the orthopedic doctor, though I will say your best information on that will come from a physical therapist. Doctors tend to know generally that exercise helps, but physical therapists can tell you which specific exercises are best.

[Harriet Vane]

2 hours ago, kbutton said:

My DS 13 has has scoliosis for quite a long time. His is not to the point of needing a brace, but he's at an age to keep track of it due to growth spurts. He has a connective tissue disorder that makes scoliosis quite likely. 

PT (with homework and sustainable exercises after PT is over) and very gentle, careful chiropractic has been great for stabilizing his scoliosis and helping with symmetry.

Regarding the hanging--that might be okay, but I would encourage anyone with scoliosis to familiarize yourself with conditions that can cause it and rule those out. My son's shoulders come completely of the sockets, so he is not supposed to hang unless he can keep his shoulders stable simultaneously (and he can't).

Some other things to look for with scoliosis that can be concerning: https://www.marfan.org/dx/score   If you expand the plus signs, it tells what each thing means and how to check it. 

 

 

Re your son's shoulders--is he hypermobile? Have you considered Ehler's-Danlos Syndrome? I ask because I have EDS and I have joints that slip out of place. One of the things that led to my diagnosis is how much my arm bones shift when I attempt pushups. I work regularly with a trainer to build strength to help stabilize shifting of various joints.

[matrips]

21 minutes ago, Harriet Vane said:

Re your son's shoulders--is he hypermobile? Have you considered Ehler's-Danlos Syndrome? I ask because I have EDS and I have joints that slip out of place. One of the things that led to my diagnosis is how much my arm bones shift when I attempt pushups. I work regularly with a trainer to build strength to help stabilize shifting of various joints.

No he’s not hyper mobile.  He and his identical twin both have their left shoulder higher than their right currently.  It wasn’t always like that, so I asked the ped if their book bag this past year (their first full year at a school) could have contributed.  They said no.  But a heavy book bag all year slung over that shoulder, during the year they finally started growing- they grew about 4” which is a lot for them. 🤷‍♀️

But I appreciate you mentioning eds.  It’s always good to think out loud and consider things.  We have several friends that have it and one has a really bad case of it.

[matrips]

32 minutes ago, Harriet Vane said:

It's a great idea to ask the orthopedic doctor, though I will say your best information on that will come from a physical therapist. Doctors tend to know generally that exercise helps, but physical therapists can tell you which specific exercises are best.

Thanks for that note.  I will ask the orthopedic if he would refer them to a PT that could teach them useful exercises for this.

[matrips]

2 hours ago, kbutton said:

Some other things to look for with scoliosis that can be concerning: https://www.marfan.org/dx/score   If you expand the plus signs, it tells what each thing means and how to check it. 

Thanks.  I will run through those with them tomorrow.  So far, nothing on there stuck out, but I’ll check the ones were able to anyway.

[sbgrace]

The last well check we had prior to COVID--maybe close to two years now--we were told one of my boys had mild scoliosis. (I have mild scoliosis myself--the curve never progressed to need active treatment but I did do PT back then...not very deligently unfortunately). But I'm responding because we were told last week that it resolved itself. He's probably grown a lot. I was pleasantly surprised. 

Also to note. Radiation exposure for x-rays related to scoliosis raise a girl's future risk of breast cancer substantially. If it's needed, it's needed. But I wouldn't want it for mild curves..wish I hadn't had exposure myself. 

Edited June 9, 2021 by sbgrace

[Arcadia]

1 hour ago, matrips said:

 He and his identical twin both have their left shoulder higher than their right currently.  It wasn’t always like that, so I asked the ped if their book bag this past year (their first full year at a school) could have contributed.  They said no.  But a heavy book bag all year slung over that shoulder, during the year they finally started growing- they grew about 4” which is a lot for them. 🤷‍♀️

 

That’s weird that it’s an affirmative no, and not a probably not. I was checked in 1984, when I was 11 and the nurses said heavy shoulder bags were a contributing factor, I reached my full adult height at 11.

https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/are-backpacks-hurting-your-kids-backs

“

• Wear both straps. Slinging a backpack over one shoulder causes a person to lean to one side to compensate for the uneven weight, curving the spine. Over time, this can cause lower and upper back pain, strained shoulders and neck, and even functional scoliosis (curvature of the spine). Teenage girls are especially susceptible to scoliosis.”

[stripe]

11 hours ago, matrips said:

The orthopedic is a a pediatric one associated with the children’s hospital, so I hope that is an option.  I will be sure to ask. Thank you 

I didn’t know anything about it, honestly, but was recommended by the orthopedics staff specifically go to the main children’s hospital rather than any of their satellite medical radiation facilities. I found this article about this type of x-ray:

https://www.dukehealth.org/blog/scoliosis-x-rays-are-safer-lower-radiation-technology

I took my kid to PT at the recommendation of the PCP, and the PT specifically recommended seeing the ped orthopedist, which rather annoyingly the PCP hadn’t even suggested, and so I did. Their office poo-pooed exercise or the notion that scoliosis causes any pain, and it is all very odd and contradictory.

Edited June 9, 2021 by stripe

[matrips]

1 hour ago, stripe said:

I found this article about this type of x-ray:

https://www.dukehealth.org/blog/scoliosis-x-rays-are-safer-lower-radiation-technology

Thats really helpful. Thanks.  I will ask if they have this.

our PCP said they don’t refer to an orthopedic for mild cases. I think she said under 30%.  My thought is I’d rather see the orthopedic early and avoid getting to that point. I’m hoping they’ll refer to a PT if I ask.

[matrips]

9 hours ago, Arcadia said:

That’s weird that it’s an affirmative no, and not a probably not. I was checked in 1984, when I was 11 and the nurses said heavy shoulder bags were a contributing factor, I reached my full adult height at 11.

https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/are-backpacks-hurting-your-kids-backs

“

• Wear both straps. Slinging a backpack over one shoulder causes a person to lean to one side to compensate for the uneven weight, curving the spine. Over time, this can cause lower and upper back pain, strained shoulders and neck, and even functional scoliosis (curvature of the spine). Teenage girls are especially susceptible to scoliosis.”

I think it had to be a contributing factor no matter what they said. It would be nice if they all agreed  and maybe even pointed it out as part of physicals, especially entering puberty.

my dd hasn’t had her annual appointment yet, so I’m wondering about her now too.

[historically accurate]

My oldest wore a scoliosis brace for about a year and a half. Her curve was considered moderate. She did PT, but honestly, it didn't help. Her curve did not advance to her needing surgery. Essentially, she did bracing, PT for a few months, and xrays every 6 months. 

She used a rolling backpack (still does) so as not to put pressure on her back. 

She occasionally has back pain now at 19. She's on the list to get EDS testing as that is the likely culprit - but at the time, none of the doctors took us seriously in drilling down for a reason. 

Bracing is pretty awful - it's hot and uncomfortable, hard to sit, hard to move, etc. I wouldn't go that route for a mild curve. It's essentially a plastic corset. 

[marbel]

My daughter wore a brace for a couple of years. It was pretty awful for her. Yes, hot and uncomfortable, hard to sleep in, hard to wear to camp. Her curve was always just on the line where surgery is recommended; she was strongly against it; the doctor didn't press it. The bracing may or may not have helped; her curve lessened a bit but sometimes they just do with growth. Her curve is just side-to-side, and not near to compressing any organs. So she is curvy at the waistline. Trousers and swimsuits can be a bit difficult but she manages to dress well. She seems to have no issues with being crooked in terms of body image (which was a concern the doctor articulated and possible reason to have the surgery). 

At some point, she spit in a cup to have her DNA tested as there is something that may tell if the curve will worsen or not. I don't remember her "score" but I think it was not super conclusive, something like 40% chance that it would increase.

 

[Condessa]

10 hours ago, sbgrace said:

Also to note. Radiation exposure for x-rays related to scoliosis raise a girl's future risk of breast cancer substantially. If it's needed, it's needed. But I wouldn't want it for mild curves..wish I hadn't had exposure myself. 

According to my son’s doctors, the amount of radiation exposure from normal X-rays is not enough to cause cancer risk unless repeated many times.  They said into dozens for MRIs, and many times that for X-rays.

Not a reason to get unnecessary imaging, but nobody needs to be worrying about getting cancer from a few X-rays.

 

ETA: Ds7 is up to 10 or 11 X-rays and 8 MRIs in a few weeks.  Secondary malignancy is likely to be a real threat as he gets older and keeps needing at least 4 MRIs per year, but there is no alternative.

Edited June 9, 2021 by Condessa

[Pawz4me]

55 minutes ago, Condessa said:

According to my son’s doctors, the amount of radiation exposure from normal X-rays is not enough to cause cancer risk unless repeated many times.  They said into dozens for MRIs, and many times that for X-rays.

Not a reason to get unnecessary imaging, but nobody needs to be worrying about getting cancer from a few X-rays.

 

ETA: Ds7 is up to 10 or 11 X-rays and 8 MRIs in a few weeks.  Secondary malignancy is likely to be a real threat as he gets older and keeps needing at least 4 MRIs per year, but there is no alternative.

FWIW -- There is no radiation involved in MRIs. My husband's type of cancer needs CT scans, and radiation is a concern with those. But when you're dealing with cancer you don't have the luxury of worrying (much) about potential future damage. Continued good thoughts for your son.

[stripe]

4 hours ago, matrips said:

our PCP said they don’t refer to an orthopedic for mild cases. I think she said under 30%.  My thought is I’d rather see the orthopedic early and avoid getting to that point. I’m hoping they’ll refer to a PT if I ask.

Re the PT, I would identify a specific problem eg sore hips or back pain versus a generic “because of scoliosis.” 
I was able to self refer, but they seemed to have no issue seeing patients with minor as well as major curves. It was an office visit plus x ray. 

[matrips]

11 hours ago, historically accurate said:

She used a rolling backpack (still does) so as not to put pressure on her back. 

Good idea. I’m going to bring that up to the boys.  It’s not a cool look perhaps, but maybe they’ll put their back first.  
yes, those braces look mighty uncomfortable.

[matrips]

11 hours ago, marbel said:

At some point, she spit in a cup to have her DNA tested as there is something that may tell if the curve will worsen or not. I don't remember her "score" but I think it was not super conclusive, something like 40% chance that it would increase.

Interesting, I’ll add that to my notes to ask about. Thanks

[matrips]

6 hours ago, stripe said:

Re the PT, I would identify a specific problem eg sore hips or back pain versus a generic “because of scoliosis.” 
I was able to self refer, but they seemed to have no issue seeing patients with minor as well as major curves. It was an office visit plus x ray. 

I’m hoping they could refer to a PT so the PT could show them how to strengthen and help their back, and what not to do that could make it worse.

[kbutton]

On 6/8/2021 at 9:40 PM, Harriet Vane said:

Re your son's shoulders--is he hypermobile? Have you considered Ehler's-Danlos Syndrome? I ask because I have EDS and I have joints that slip out of place. One of the things that led to my diagnosis is how much my arm bones shift when I attempt pushups. I work regularly with a trainer to build strength to help stabilize shifting of various joints.

He has Marfan Syndrome, which is another connective tissue disorder. The hypermobility often takes a different pattern from EDS, and the disorder can include serious issues like aortic aneurysms. I would encourage anyone with scoliosis or pectins abnormalities to see the checklist I linked. Individuals who know they have Marfan and get treatment have a nearly normal life expectancy. Untreated Marfan Syndrome has a life expectancy in the 40s.

Most people with scoliosis don’t have Marfan, but knowing the signs saves lives.

 

ETA: pectus abnormalities, not pectin. These include sunken/funnel chest, “pigeon” chest, or asymmetry. It’s caused by an overgrowth of bony tissue in the ribs.

Edited June 10, 2021 by kbutton

[Ausmumof3]

Not a personal story but child of a friend.  In their case it ended up being caused by a benign brain tumour.  That was treated successfully but he has to wear a brace. 

[Frances]

15 hours ago, historically accurate said:

My oldest wore a scoliosis brace for about a year and a half. Her curve was considered moderate. She did PT, but honestly, it didn't help. Her curve did not advance to her needing surgery. Essentially, she did bracing, PT for a few months, and xrays every 6 months. 

She used a rolling backpack (still does) so as not to put pressure on her back. 

She occasionally has back pain now at 19. She's on the list to get EDS testing as that is the likely culprit - but at the time, none of the doctors took us seriously in drilling down for a reason. 

Bracing is pretty awful - it's hot and uncomfortable, hard to sit, hard to move, etc. I wouldn't go that route for a mild curve. It's essentially a plastic corset. 

Way back in high school I worse brace for probably two years after being diagnosed in sixth grade and monitored every six months for the next three years. I also did PT for a couple of years before and while I had the brace. I took my brace off for sports and continued to be a very active athlete. It was never my understanding that the PT was meant to improve or cure the scoliosis, but rather to stay strong if a brace was needed and while the brace was being worn. My doctor (orthopedic surgeon) and PT both also highly encouraged me to continue all athletics. Fortunately, I never progressed to needing surgery.

I did have the very unfortunate experience of my regular pediatrician recommending I refrain from almost all physical activity after diagnosis which was devastating as I lived to move and was a total tomboy. I think my parents had too much trust in him. Ironically, I was fortunate that my curve eventually progressed enough that I was referred to an orthopedic surgeon. He put in my PT and encouraged as much athletic participation as I desired. While the brace was as bad as others have described, not being able to do sports was actually worse for me.

Edited June 10, 2021 by Frances