scoliosis questions

[Tess in the Burbs]

My son started having pain this year, and you could see one side higher than the other.  His Dr confirmed it was mild scoliosis in Jan.  However, his pain is now daily and the dr yesterday ordered an X-ray and said the curvature is 21 degrees.  We are now getting a referral to a specialist.  

 

What do I need to ask from this specialist?  I know very little about this condition.  Would love to know what I need to ask or be aware of. 

 

thanks!

[Pawz4me]

DS was diagnosed a few years ago. Unfortunately, I've forgotten most of what I knew! I've also blanked out on what his degree of curvature was. His orthopedic doc wanted him to have a full spinal MRI.  Apparently because scoliosis is less common in boys than girls, when it's a boy they like to make sure there is no underlying cause.  I believe they were mainly ruling out a tethered cord, but they may have been looking for other things I didn't know about.  DS's curve was mild but the ortho doc wanted to follow him until he'd gotten through most of his rapid growth spell to make sure it didn't get any worse.  So we went in for x-rays a couple of times a year for a few years.  DS also did some physical therapy for awhile for some muscle imbalances that were likely due to the scoliosis.

[displace]

I think whatever the recs are, ask the likely helpfulness percent or guesstimate. Will PT help in all cases? Should a splint be used? Will a splint help a little or a lot? Will it help with pain or physical curvature? Should you pursue different therapies at the same time (PT with a splint, for example). Are there different types of splints?

 

Idk what to ask really.

[marbel]

Both my kids have scoliosis; my daughter's is fairly severe, nearly to the point where surgery is indicated.  She wore a brace for several years.  My son's is mild; he has an exam and xray every two years and will till he's 21.  Neither have ever had any pain so I can't help you there.

 

Our orthopaedist had my daughter take a test to show the likelihood of her curve worsening.  I don't remember the name of the test; she spit into a cup and they tested for something in her DNA.  Her test came back inconclusive.  

 

Our doctor and the one we saw for second opinion said that there is nothing that will help idiopathic scoliosis - not chiropractic, physical therapy, or really anything else. They did emphasize the importance of developing core strength - pilates, yoga, and such.    But this is also based on the child not having any pain, so of course your doctor may have different things to say about that.

 

I am pretty sure that 21 degrees is a mild curve and just warrants watching.  But again, with pain... that's different.

 

Try to relax.  Take a lot of notes and seek a second opinion, even if your doctor seems knowledgeable.  I think our doctor is brilliant but I still went to the children's hospital for confirmation.  It eased my mind a lot.

[pehp]

I have severe idiopathic scoliosis.  I'm not great about checking threads, so if you have specific questions please feel free to PM me.  (Severe = 70+ degrees curves uncorrected, wore a brace throughout childhood, and have a spinal fusion w/ 2 fiberglass rods and half of my left hipbone in my back. :))

 

The primary question I would ask entails how to prevent progression.  You want to avoid surgery, in my opinion. (Don't panic.  21 degrees does not mean surgery--that's mild!) Physical therapy, chiropractic care, yoga or pilates (the correct moves, with a skilled professional who understands scoliosis), would all be on my radar.  If it were me, I would not take any orthopedic doctor's advice to 'let it go' for a while and see what happens. I'd try to get involved in at least one therapy now to try to help prevent progression.  

[LMV]

-Generally, idiopathic scoliosis should not be painful so if your son is having significant pain then you may need to advocate that the scoliosis not be accepted as the explanation for the pain and further workup be done related to the pain.

-IIRC, your son is entering adolescence and his period of rapid growth. This is the time when close monitoring of the curve (because they are the most likely to progress rapidly during this period) is necessary. 

-Bracing is used not to correct the curve but just to prevent or impede progression and ideally get the child through their rapid growth phase.

-There is not support in the literature for PT, yoga, etc being helpful with structural curves. Now if there is a functional curve (because of weak core, leg length discrepancy, etc) then that is different.

[dirty ethel rackham]

Dd has scoliosis and finished treatment for it (other than yearly x-rays.)  From how it was explained to us, 24% is where they usually recommend bracing to prevent further worsening of the curve.  DD was 27% unbraced.  Everyone we talked to said that someone with ideopathic scoliosis would not have more pain than someone without it.  So, if there is pain, that needs to be investigated.  Although we were told that successful treatment would be the curve not getting worse, dds curve is now under 23%.  Due to the fact that she is an athlete, we weighed our options because having a strong core was extremely important.  Full-time bracing can get in the way of using the core muscles, which can cause them to weaken.  We chose to use the "Charleston Bending Brace" because this was only used at night.  She did lots of specialized core exercises during the day.  We have no way of knowing whether or not those were helpful with the scoliosis, but they were helpful for her sport.  

[Katy]

I think you've gotten some really good advice.  I have intuition that I should share something that might seem totally off the wall...  Have you ever heard of Callanetics?  It's a 1980's program that's based on the work of the same thing the Barre method and Pilates are based on.  The creator had severe scoliosis and claimed she cured herself with her program.  Anyway, even though it's a fantastic workout, I find it impossibly boring, so I can't imagine a young boy making it through the DVD.  If this idea at all appeals to you, maybe watch the video a few times, write down the exercises, and then do them with him to music that he likes and see if that helps.  I bought the DVDs at Amazon, but if you're interested in seeing what it's all about there are a bunch of videos on YouTube.  I don't want to link because I'm not sure all of them are posted legally.

[Tess in the Burbs]

this is great, thank you!!

 

Honestly, he had some pain in Jan, but family Dr said it was mild and to wait.  He did no X-ray then.  Visually I don't think he looks worse than Jan, but he has daily pain.  Which is why I went back to get an X-ray.  We have a referral to Seattle Children's and his first appt is in mid October.  The family Dr recommended strengthening his core.  We have the wii Yoga and he enjoyed doing that.  He has a list of other exercises to start as well.  This is not my athlete kid, so we will be working on finding something he can enjoy.  

 

I will look into that video mentioned.  You never know what he might like.  

[catz]

Pain can be due to muscle tension/imbalance.  We do not have scoliosis in our family, but several people with back issues and spinal quirks.  I'd definitely pursue it because something like PT could really help with balance/strength issues and help with existing pain.  It's great your following up. :grouphug:

[Lolly]

My dd with scoliosis laughs at the doctors who tell her there is no pain. She definitely has pain. Her curvature was last measured at 25 top and bottom (S) Swimming is the most recommended exercise. If he is put into pt, they will do exercises that mimic swimming. Dd was already a swimmer, so...Core strength was not an issue for her. She cannot sit up straight for long periods of time. She receives professional massage on a regular basis. (Coming home from college for one this weekend as a matter of fact.) That is her main pain management. When things get too tight back there, time for a massage!

[pehp]

I will chime in on the pain issue.  I live with it every day--often severe, sometimes mild.  When I was a child it was mild (I was braced from ages 5-12) and as a teenager it was actually a bit worse (post-operative years--my surgery was when I was 13). In my 20s it was fairly mild, even with daily running, and in my 30s it is worse (and now involves my right hip).  Monthly massages and chiropractic care have done wonders to help with the pain, and I have to be smart about exercise (I can no longer run and NO plyometrics!)   My own experience is that yes, this can be painful.  On the bright side, I have developed a high pain tolerance as a result.  On the downside, ouch every single day.

[pehp]

My surgery was in 1990 so fiberglass must have replaced steel. My mom had steel rods...her surgery was in 1962ish. I have a very prominent right shoulder blade and my right shoulder and hip are two inches higher than the left. It is great that you escaped the jutty shoulder blade...it makes wardrobing a challenge at times!!!

 

Okay, that was a little off topic....sorry OP.We surgery-corrected types have to bond, I suppose!! ;)

[extendedforecast]

My daughter was recently diagnosed with scoliosis. She has pain daily and ibuprofen does nothing for her. We are waiting for her appointment in October with the orthopedist to see what can ve done. We were told she has a 24 degree curve(?), which isn't anything to be alarmed about. I'm still concerned because there is no family history, and I'm worried that a tumor is causing it.

[Tess in the Burbs]

No one in our family has ever had this that I know of.  So I do worry there is some cause that isn't good.  We have a month to the first appointment.  I picked up the X-rays, but it's some program, so I can't open to see them.  DS drew it for me LOL.  He's eating a lot, and due for a growth spurt.  I kinda hope he just grows and this gets better with that growth.  I can't worry about it until we speak to the dr.  I hadn't thought about tumors and such.  

 

[Pawz4me]

My daughter was recently diagnosed with scoliosis. She has pain daily and ibuprofen does nothing for her. We are waiting for her appointment in October with the orthopedist to see what can ve done. We were told she has a 24 degree curve(?), which isn't anything to be alarmed about. I'm still concerned because there is no family history, and I'm worried that a tumor is causing it.

 

 

No one in our family has ever had this that I know of.  So I do worry there is some cause that isn't good.  We have a month to the first appointment.  I picked up the X-rays, but it's some program, so I can't open to see them.  DS drew it for me LOL.  He's eating a lot, and due for a growth spurt.  I kinda hope he just grows and this gets better with that growth.  I can't worry about it until we speak to the dr.  I hadn't thought about tumors and such.  

 

Remember that scoliosis is very common.  Especially in girls, but even in boys.  The likelihood that it's caused by a tumor is probably incredibly small.

[Jen in NY]

Has your son been checked for Perthes? Mine started to have scoliosis and uneven leg growth that threatened to make the unevenness in his back and hips even worse. When we started investigating the situation, the Dr realized that he had undiagnosed perthes disease which was causing the scoliosis. At some point as a young child there was an "event" that caused the blood flow to the ball of one hip joint to stop.... they do not know what causes 'the event' in Perthes cases but the upshot is that the growth plate in that hip was damaged, so that the more ds grew, the more uneven he got. The ortho was able to do a quick surgery on ds's healthy leg to slow down it's growth (just inserted a couple of screws... in and out in a couple of hours....)  that way the unevenness will not get worse as he grows like crazy. It is actually now working in his favor to grow because he is getting more and more even and his back and hips are straightening out. We were *extremely* lucky to have caught it before his growth spurt was over.

 

(Sorry if this makes no sense... typing quickly.....)

 

My message to you is: If your son is experiencing or on the verge of a growth spurt, have someone knowledgeable inspect the xrays of his hips *now* - not a month from now. If one is damaged, there may be something to be done now before the growth spurt is over that would be helpful in the long run. It's an outside chance, but I thought it was worth mentioning.

 

Good luck to you and :grouphug: :grouphug: :grouphug: .

[Katy]

If he does get diagnosed with one leg shorter than the other, get a second and even a third opinion before you buy anything like a shoe insert.

 

I got diagnosed with that too, then got a second opinion with a chiropractor who proved to me that it was only a genetic tendency to get a tight hip.  He compared my legs, took me through a couple of hip stretches, and then compared again, and then the "shorter" leg was longer than the other. It was amazing.  My mother and grandmother had been diagnosed with one leg shorter too, but that chiropractor was sure the diagnosis was bunk, and he convinced me he was right, at least in our family's case.  We have a history of mild scoliosis in all the women though.