Anybody have experience with scoliosis?

[milee]

My oldest son - just turned 14 - has scoliosis and unfortunately, it's now nearing the point where surgery might be recommended. And yes, this is the kid who's really small for his age, so he really doesn't need to be giving up any height or feeling any more physical awkwardness.   We just got a referral to a specialist, so hopefully will see that doctor in a few weeks.  Meantime, I'm doing some research and realizing that this is definitely one of those cases where having more info is not going to make me feel better.  Some of the information out there is hair raising, but I also know the internets is not the best source of medical advice.

Anyone have scoliosis or have a child that had it?  Care to share your story?

[steff]

I have a cousin that had it.  She's a 2nd cousin & I only got to see her once or twice a year.  So I don't know all the exact details about what she went thru.  I know she had surgery & she grew (i think don't hold me to it) 6 inches after the surgery.  She was in a cast thingy for a long time & then in one of those hard body braces.  We were probably 13-14 years old when this happened in the 80's.  I know as an adult she had 5 kids and I've never heard anything about her having any more problems after the surgery.  I saw her at a funeral about 10 years ago & she was still tall and thin (lucky bitch!). 

so yeah, that's real helpful huh?   lol

[The Captain]

One of my BFF's in college had it.  He had to wear a brace when younger and was specifically advised to take up swimming (can't recall exactly why).  He never had surgery but lived life just fine.

Good luck with you little man.

[The Walk of the Penguin Mich]

Milee.....I know nothing of scoliosis but I DO know how to look for the best treatment you can find for your problem.

What I would do is research out some sort of scoliosis boards and ask there. I would NOT consider surgery until I had researched it up one side and down the other. What I have discovered is that the really good doctors names keep popping up over and over again. This is something I would travel for, if necessary.

In the meantime, make sure your insurance is the most flexible it can be. When my hips started acting up, on open enrollment I switched from an HMO to a PPO because it gave me the most flexibility in getting treatment. That way, I was not limited as to which hospital I could go to, or which surgeon would do the surgery.

Other than that, that's all I've got.

[Deleted]

Milee I'm so sorry you are going through this. 

DD was borderline scoliosis for a few years. We had to have her measured and wait while the radiologists "did their thing" and measured her angles with protractors. She was always found to be JUST UNDER the limit, so in the end, she received no treatment for it. I do realize she may need treatment as she gets older, depending on how she "ages" (she is 21 now). 

However, they DID eventually realize that she had a very bum knee. Turns out her meniscus was deformed, and cracked. She had always done dancing, but one year in MS she decided to do gymnastics AND dancing, and she immediatelystarted limping. It took months to find out what the problem was because the docs were very reluctant to do an MRI on a young teen, they kept "pooh-poohing" my request for one, but I finally managed to get her one. The doc IMMEDIATELY saw her huge knee problem. DD had keyhole surgery done on her knee at 13 or 14. She has been doing GREAT ever since (although she was told she could never become a dancer because her knee wouldn't support the strain.)

My former boss (in her late 70s now) was undiagonosed for many years and finally had surgery after she retired. The prep for her surgery was absolutely horrific. Her head was held in a vice, she couldn't move AT ALL for a week, and again, that was just the prep. But I'm sure that things have moved on since then (about 15 years ago). 

But all this to say, Milee, are you sure that the scoliosis is really the problem, rather than his body's attempt to adapt (as it was in DD's case.) DD's borderline-scoliosis turned out to be due to her body's attempt to deal with her very defective knee. Might your son have any ankle, knee or hip issues? 

[Deleted]

Don't have any info. Just want to add my sorry this is happening, and hope you find all the best help you need.

[milee]

May 12, 2014 17:57:05 GMT -5 @debthaven2 said:

But all this to say, are you sure that the scoliosis is really the problem, rather than the body's attempt to adapt (as it was in DD's case, her near-scoliosis was due to her body's attempt to deal with her defective knee)? 

Unfortunately, based on how quickly it's progressed over the last year - since he hit his growth spurt - and the now pretty severe curve, it's obvious that it's a spinal curve not an adaptation. He was at 9 degrees prior to a year ago, which is borderline. He is now at 35.  It appears that once a person gets to 40, they tend to continue to degrade for the rest of their lives, eventually causing pain and possible organ damage. So when people get to 40, that's when the docs start to recommend surgery.

If he were at the end of his growth, the doc said he could live with the 35 and be just fine, so his pant legs were different lengths, not the end of the world.  But this type of curve tends to progress as growth continues and we think he's at the beginning of his growth spurt, not at the end, which means the curve is highly likely to get worse.  Also, it's an S and the thoraco lumbar (sp?) type, both of which tend to progress. 

[milee]

May 12, 2014 18:03:15 GMT -5 oped said:

Don't have any info. Just want to add my sorry this is happening, and hope you find all the best help you need.

Thanks. I'm not happy and of course I'm worried - the idea of spinal surgery on your kid is pretty awful. But everybody has stuff they deal with and I know that we'll figure this out, too. Life is still good. And he'll be OK.

[milee]

May 12, 2014 17:56:16 GMT -5 The Walk of the Penguin Mich said:

Milee.....I know nothing of scoliosis but I DO know how to look for the best treatment you can find for your problem.

What I would do is research out some sort of scoliosis boards and ask there. I would NOT consider surgery until I had researched it up one side and down the other. What I have discovered is that the really good doctors names keep popping up over and over again. This is something I would travel for, if necessary.

In the meantime, make sure your insurance is the most flexible it can be. When my hips started acting up, on open enrollment I switched from an HMO to a PPO because it gave me the most flexibility in getting treatment. That way, I was not limited as to which hospital I could go to, or which surgeon would do the surgery.

Other than that, that's all I've got.

These are great suggestions, thanks. We already are on a PPO, even though it's very high deductible, that gives much better flexibility. And yes, I definitely would be willing to travel if spinal surgery is needed. 

The research part is hard. As you know from our earlier talk on the other thread, so much of what is on the internet is garbage, that it's a lot of wading through to find the source and evaluate if it's worth considering. 

I'll start looking for the scoliosis boards, though. That sounds very helpful.

[Deleted]

I'm sorry Milee. All I can say is that if he does need surgery, it's better done at 14 or 15 than 16 or 17. 

I think the limit here is 30°, and DD was always JUST under that. 

Hugs to you and your son. 

[Sharon]

Miss Rigby's granddaughter had surgery for scoliosis.  If you look in Earth Muffins coffee shop around Dec 2012 you will see where she was posting about the surgery.  I believe she posted on into February about it.  DGD was out of school etc for recovery time.

Good-Luck to you and your son.

[sesfw]

DD has scoliosis.  She was dx at age 13 with a 19% curve and the Dr suggested the back brace.  We ordered one for her but in the mean time I talked to her PE teacher about it.  She told me to talk to our local chiropractor.  Back brace ended up in the top of garage until we finally threw it away.

Long story short, she still has the curve in her spine but hasn't gotten any worse.  She is now 52 and her shoulders and hips are balanced.  She has no problems with physical life and she does anything she wants to.

With the rapid changes in your son I don't know if a chiro will help but if you can find a good one to talk to that would be another resource.

[milee]

May 12, 2014 18:48:34 GMT -5 sesfw said:

DD has scoliosis.  She was dx at age 13 with a 19% curve and the Dr suggested the back brace.  We ordered one for her but in the mean time I talked to her PE teacher about it.  She told me to talk to our local chiropractor.  Back brace ended up in the top of garage until we finally threw it away.

Long story short, she still has the curve in her spine but hasn't gotten any worse.  She is now 52 and her shoulders and hips are balanced.  She has no problems with physical life and she does anything she wants to.

With the rapid changes in your son I don't know if a chiro will help but if you can find a good one to talk to that would be another resource.

How many sessions did she do with the chiro?

[midjd]

I don't know the first thing about scoliosis (except for reading Judy Blume's Deenie in junior high). But I'm sorry you're having to deal with this. Google is your best friend (how are you supposed to decide something without thoroughly researching it?) but also your worst enemy.

I know Muttleynfelix's husband has had several(?) spinal surgeries, she might have some tips on coping/recovery/what to expect. She was very helpful with advice when my DH was having orthopedic surgery.

[mmhmm]

I've a cousin with scoliosis.  She's in her sixties now, never had surgery and is significantly crippled - walks with a cane with some difficulty.  I've had a couple of older patients with the condition, as well, but don't know much about kids dealing with this.  Mich's suggestions are excellent to increase your knowledge, but the best bet will be seeing the specialist and getting the results of whatever they do.  Since your DS is so young, I'd be tempted to get at least two opinions before I made any decision.  I know you'll choose the best specialists you can find to evaluate him.  Best of luck, hon.  I'm sorry you and your DS are having to deal with this.

[The Walk of the Penguin Mich]

May 12, 2014 18:10:48 GMT -5 milee said:

May 12, 2014 17:56:16 GMT -5 The Walk of the Penguin Mich said:

Milee.....I know nothing of scoliosis but I DO know how to look for the best treatment you can find for your problem.

What I would do is research out some sort of scoliosis boards and ask there. I would NOT consider surgery until I had researched it up one side and down the other. What I have discovered is that the really good doctors names keep popping up over and over again. This is something I would travel for, if necessary.

In the meantime, make sure your insurance is the most flexible it can be. When my hips started acting up, on open enrollment I switched from an HMO to a PPO because it gave me the most flexibility in getting treatment. That way, I was not limited as to which hospital I could go to, or which surgeon would do the surgery.

Other than that, that's all I've got.

These are great suggestions, thanks. We already are on a PPO, even though it's very high deductible, that gives much better flexibility. And yes, I definitely would be willing to travel if spinal surgery is needed. 

The research part is hard. As you know from our earlier talk on the other thread, so much of what is on the internet is garbage, that it's a lot of wading through to find the source and evaluate if it's worth considering. 

I'll start looking for the scoliosis boards, though. That sounds very helpful.

I belong to 4 different hip groups.  I had been monitoring them or a few years before I had to make any moves, so I had a good idea which way to move if I needed to.

When I got infected, I had 3 different revisionists in the back of my mind to use, 2 in Seattle, one on Chicago and another in MN.

There is a lot of garbage online, but it is really easy to weed those out.  But there are boards like this for people who have all sorts of issues, I can't imagine tht there is not one for scoliosis.

If I was seeing my orthopod any time soon, I'd ask him.  Here is an idea.....the AAOS has annual meetings and I would imagine that te proceedings are broken into body parts.  Usually, at least the abstracts are available online.  What I would do is start looking through those and see what institutions and hat names pop up mst frequently.  This might give you a place to start.

[Nazgul Girl]

Hi Milee, I'm sorry to read that your son has this diagnsis.   My DH has it, but he just ignores it, and you can't tell unless he has his shirt off.   I hope that everything works out for you and your son.    

[Nazgul Girl]

I did just find this interesting paper by the Pediaric Orthopedic Society of North America, or POSNA. I hope it might help you.

www.posna.org/education/StudyGuide/ScoliosisUnder40Degrees.asp

[NoNamePerson]

Have you checked to see if there is a Shriners Hospital for Children near you? Sorry you and son are going thru this.

[plugginaway22]

My DDs friend had the surgery when she was about 14.  She grew 2 inches! haha, her Mom was a pediatrician, and said the best was Children's Hosp of Philadelphia where she had it done.
But that was 12 years ago, so could be somewhere else now?

[milee]

May 12, 2014 20:45:17 GMT -5 plugginaway22 said:

My DDs friend had the surgery when she was about 14.  She grew 2 inches! haha, her Mom was a pediatrician, and said the best was Children's Hosp of Philadelphia where she had it done.
But that was 12 years ago, so could be somewhere else now?

12 years is recent enough to be a good place to start researching. Thanks.

[milee]

May 12, 2014 20:12:23 GMT -5 Nazgul Girl said:

I did just find this interesting paper by the Pediaric Orthopedic Society of North America, or POSNA. I hope it might help you.

www.posna.org/education/StudyGuide/ScoliosisUnder40Degrees.asp

Thanks, it was good information. I guess his is the type that is likely to progress, which is unfortunate. The article was helpful, though, in that it discussed different outcomes and treatments depending on the bone age as measured at the wrist or hand. Just so happens we have fairly recent x-rays of his hand which I'll bring with us to the appointment with the scoliosis specialist.  We have hand xrays because this is the son that has always been very small for his age so a pediatric endocrinologist has been monitoring his growth.   The irony here is that about 6 months ago, the pediatric endocrinologist told us he didn't need to be monitored any more since he was growing so much and so well.  So he finally starts growing normally, only to discover that aggravates the scoliosis. 

[973beachbum]

Mille my DD has a few classmates with Scoliosis.  The two that had the C kind just did the braces for a few years and seem to be doing okay.  One girl had the S kink and she had to have surgery.  She had a hard brace all though middle school and had the surgery in her freshman year of HS so about 14 years old.  Today, 3 years later if I didn't know she had had scoliosis I wouldn't know it from looking at her.  she is active in the plays and band and is always acting and dancing in them. 

She also had her treatment at Childrens Hosp of Phila.  I know you are in Fl, but I hope that helps. 

[milee]

It does help, thanks.

[Deleted]

May 12, 2014 18:03:15 GMT -5 oped said:

Don't have any info. Just want to add my sorry this is happening, and hope you find all the best help you need.

[steph08]

I have/had mild scoliosis - nothing to the degree you are talking about with your son though, but I could feel the curve in my spine and my one leg was just a tad shorter than the other (went to the ortho, etc. when I was around 12/13 - I can't remember a lot of details, like the degree of my curve, etc., surgery was never recommended for me).

It never bothered me as a kid, but as an adult, I started dating my DH, whose mom works for a chiropractor. I started off going two times/week for a month or two, then down to once a week, then once every other week, and now I am down to just maintenance, which I do maybe once/month or so. There doesn't seem to be a curve anymore. I will have to ask my chiro about it next time I'm in (probably this week - baby is a killer on the spine).

In terms of celebrities , I know Giuliana Rancic talks about her scoliosis as a child and how she has rods in her back.

[Wisconsin Beth]

One of the kids in DD's K5 class has scoliosis.  She's in some kind of brace for 18 hours a day.  So during class, when her daily time is up, she goes into the washroom and takes it off.  I never noticed it and we've done playdates with her.  I can ask her mom for info on support groups and/or doctors if you'd like.  But we're in Wisconsin. 

And I've got MissR's contact info,  I can ask for an update on her granddaughter, if you'd like.  Let me know. 

[sesfw]

How many sessions did she do with the chiro?

It's been so long ago I don't really remember.  Seems like at the beginning it was maybe twice a week for a year or so.  Then it slowed to once a week through out her growing years.  Through her young and mid adult years it was maintenance of once a month.  Now in her 50s she goes when her back gets tired.

She has been lucky and found good chiropractors that have helped her, and she knows the questions to ask.  Mostly where the education was from.  She found Palmer type of school to be the best for her.  There are chiro quacks out there so ask a lot of questions.

[Angel!]

I had scoliosis & had the surgery at 13 years old (in 1993).  They caught it when I was around 8 or 9 & I started seeing a specialist yearly.  At one point they had me in physically therapy trying to strengthen the muscles on one side hoping to reduce or at least stall the curve.

When I was around 12 they decided surgery was inevitable, it was just a matter of when.  They wanted to wait until I hit 40 degrees.  So they would schedule me for surgery 6 months out, I would visit the doc a week or two before & get x-rays.  They canceled & rescheduled at least twice because I hadn't hit 40 degrees yet. 

The summer before my surgery I actually started experiencing back pain.  Sitting too long or certain activities would make my back hurt.  So when I had surgery that winter, I was ok with it & knew it was time because I didn't want the pain to get worse or to have to live like that.  I had two rods put in with wires & screws.  I had bone cut out of my right hip & used to fuse my back.  It is around an 8-10 inch area that is fused.  I won't lie, it sucked.  It probably took around a month to feel pretty well recovered to the point where I could move around easily & not be in pain.  You have to learn to do some things different, but not extremely different - like they taught me to roll to my side & push myself up to get out of bed.  I can just sit up now, but at the time I didn't have the right muscles developed to compensate for the fact that I couldn't curve or arch part of my back.  I also had to walk with a cane for a while because of my hip (this was the worst part for a 13 year old girl).  I didn't have to wear any device as part of recovery though.

I don't regret it, I know I would be physically disfigured & in pain had it not been done.  People can't tell, only if you see my scar or it comes up in conversation would someone ever know.  I do get complemented on my posture often though

I never wore a brace.  My doctor said that braces don't really do anything & would just make me uncomfortable for years & I would still eventually need the surgery.

I think I am probably an inch or two shorter than I would have been.  But, you have to remember the only part that stops growing is that segment of your back.  Everything else still grows, so you don't get stuck at that height.  I might be concerned if you expect a large amount of growth from your son still, so much so that he might look disproportioned.  I honestly don't know if that could be an issue. 

Let me know if you have any specific questions.  I am sorry you have to deal with this.  It has to be tough.

[The Walk of the Penguin Mich]

Angel....

Have they ever informed you that with the rods you have in your back, that you need to be careful with infection?