PDA

View Full Version : Questions and more questions....



Nanette77318
01-14-2009, 12:00 PM
My son is 12 and during a sports physical his Pedi. noted a curve and told us to wait and watch for 4-6 months. This is where all my questions begin!

The Pedi. did not tell us to get x-rays. Nothing. Just to wait. WHO can wait?? That was more of a sarcastic question, so don't feel the need to answer that one! : )

However...I have gone over my son visually and DEFINITELY he has a rib hump. His shoulder blades are of different prominence, his hips look a little lopsided and his shoulders are as well. So, I understand that all that comes with scoliosis.

This is where my questions come in. I have searched the internet for days and I have a plethora of information, which is all fine and dandy...but should I "wait". That is the major question. "If" my son's scoliosis (which the Dr. NEVER said...he called it a "curve to his spine"...so, officially, I suppose my son doesn't even have scoliosis? or does he?) See...so many questions....

I digress..."if" my son's scoliosis is "insignificant" would I be seeing all those other signs in his body? Visually, what would an insignificant curve look like? Does that make sense?

Should I question the Pedi.? Should I trust his judgement? We've NEVER had anything major like this so, he's been wonderful up to this point! He said that since my son is in a growth spurt, to wait and watch and for him to "sit up straight" and do some exercises to strengthen his back. But, he didn't even tell us what exercises to do!!!

So, there ya go! Thanks a bunch.....

Pooka1
01-14-2009, 12:18 PM
Wow you do have many questions! Welcome to the club!

I'll try to answer your questions but hopefully plenty of others will weigh in also.


My son is 12 and during a sports physical his Pedi. noted a curve and told us to wait and watch for 4-6 months. This is where all my questions begin!

(snip ped saying to wait)


This is where my questions come in. I have searched the internet for days and I have a plethora of information, which is all fine and dandy...but should I "wait". That is the major question. "If" my son's scoliosis (which the Dr. NEVER said...he called it a "curve to his spine"...so, officially, I suppose my son doesn't even have scoliosis? or does he?) See...so many questions....

If the curve is less than 10*, it is not scoliosis as I understand it.

But the problem here is there is no way the Ped could eyeball a smaller curve at all accurately. I strongly suspect most curves that are less than 10* are not obvious and only seen on radiograph.


I digress..."if" my son's scoliosis is "insignificant" would I be seeing all those other signs in his body? Visually, what would an insignificant curve look like? Does that make sense?

Yes it makes sense. I think what you are describing is a bit of rotation which is usually accompanied by a scoliotic curve (>10*). It's possible to get to a 40* curve or higher and above with little to no rotation and the curve is barely visible.


Should I question the Pedi.? Should I trust his judgement? We've NEVER had anything major like this so, he's been wonderful up to this point! He said that since my son is in a growth spurt, to wait and watch and for him to "sit up straight" and do some exercises to strengthen his back. But, he didn't even tell us what exercises to do!!!

So, there ya go! Thanks a bunch.....

If you are seeing obvious asymmetry, then you should get a referral to a pediatric orthopedic surgeon.

My guess is the pediatrician honestly thinks the curve is below the point of intervention and hopes the growth spurt can help. The conundrum with kids who have growth left is that fusion of the spine can (not if screws are used) result in complications if there is much growth.

There is no evidence that sitting up straight or exercises help scoliosis. What might help short of fusion is bracing and non-fusion surgeries like Vertebral Body Stapling (VBS), Growth Rods, and Titanium Ribs (VEPTR). Unfortunately, there is no robust evidence bracing works and the non-fusion surgical techniques are still relatively new but promising. Fusion is known to work and in certain cases is a cure with no sequelae over and above generally encountered problems in the general population. But they don't like fusing kids with lots of growth remaining.

Good luck.

scoliboymom
01-14-2009, 12:26 PM
The first doctor we went to said yes he has scoliosis but it looked minor to him. He also said he didn't think they even braced anymore these days.
I insisted on x-rays and they came back showing a 58* curve well past the threshhold of surgery. He was not our regular doctor and needless to say we never went bak to him.

Yes I think your son probably should be x-rayed now, just to establish a baseline to know 6 months down the road if it's progressing.
I have to say that Patrick's xrays always looked more impressive then his real life back (and he is very thin). I think the skin and muscles can hide a lot. At the same time I think one can have a lot of rotation without a high curve so that could account for the ribhump.

Ramona

laurieg6
01-14-2009, 12:46 PM
I agree with what's been said so far. It sounds like you need to bring your son to a pediatric orthopedic surgeon for an x-ray to get a baseline measurement. Your son is probably at least starting an adolescent growth spurt now and a lot can change in 4-6 months. Plenty of people end up "waiting and watching" in 4-6 month increments but you have to know where your starting point is. The sooner you start treatment, the more effective it can be and the more treatment options you have. With some treatments, the child's growth is utilized to help straighten the curves.

Nanette77318
01-14-2009, 01:15 PM
I so appreciate you moms!

Would it shock any of you if I said that I feel like I am hearing "Greek"?

It's like a battle in my head, where I don't want to be motivated out of fear but I want to be wise at the same time...My husband thinks nothing of this latest news but every time I see my son, I find myself constantly looking at his back! When I see him across the room, my mind is thinking..."are his shoulders crooked?" Ya know???

And then another part of me thinks, oh, in 4 months we'll go back and he'll be fine. All this will be gone and it's just a quirk of growing up....is that thought, me...being in denial???

And then I think, well if I get x-rays now, and it "really" is nothing significant, I wait anyway!

It's a viscous circle!

Pooka1
01-14-2009, 02:02 PM
I so appreciate you moms!

Would it shock any of you if I said that I feel like I am hearing "Greek"?

Don't worry about that now. Once you get to a pediatric orthopedic surgeon, everything will be explained hopefully.

And I really think you need to see a surgeon for a baseline soon. The measured angle is one thing; The rate of curvature, if any, is another important piece in deciding what, if any, course of action is required. You need at least two points to calculate a rate.


It's like a battle in my head, where I don't want to be motivated out of fear but I want to be wise at the same time...My husband thinks nothing of this latest news but every time I see my son, I find myself constantly looking at his back! When I see him across the room, my mind is thinking..."are his shoulders crooked?" Ya know???

No need to be motivated out of fear. Be motivated by trying to figure out what, if anything, is required for your son NOW. Some non-fusion treatments have an optimal time window. You don't want to miss any window that you wish you went through. We are talking one or two radiographs. This is not a big deal to get a baseline.


And then another part of me thinks, oh, in 4 months we'll go back and he'll be fine. All this will be gone and it's just a quirk of growing up....is that thought, me...being in denial???

Some curves spontaneously correct completely. But I have to tell you, if the curve is large enough to produce a visible asymmetry to the unschooled eye, then it is not likely to spontaneously correct but rather stay where it is or get worse.


And then I think, well if I get x-rays now, and it "really" is nothing significant, I wait anyway!

It's a viscous circle!

There is no down side to getting radiographs now and there are several upsides (like not missing time windows).

Good luck.

Nanette77318
01-14-2009, 02:39 PM
to produce a visible asymmetry to the unschooled eye,

I have taken pictures, to help me down the road, to gauge for myself if anything significant is happening.....but they are too large to post on this and I have no computer skills to shrink em. I'm questioning if I am just being a neurotic mother. Maybe I'm seeing things that aren't there? Maybe?

Pooka1
01-14-2009, 05:01 PM
I have taken pictures, to help me down the road, to gauge for myself if anything significant is happening.....but they are too large to post on this and I have no computer skills to shrink em. I'm questioning if I am just being a neurotic mother. Maybe I'm seeing things that aren't there? Maybe?

That approach is likely not reliable. Nobody can eyeball things accurately that way.

Have your son bend forward at the waist and see if there is a hump on one side of his back. If there is, I suggest you get radiographs.

Snoopy
01-14-2009, 06:43 PM
Nanette,

At the very least, convince your son's ped. to order an x-ray.

Our family doctor diagnosised my daughter with obvious Scoliosis--I could see it with my untrained eye as soon as he had her bend forward--but told me he didn't think it was too bad. He said we'd probably just watch her for now but wanted an x-ray to be sure.

Once the x-rays were done, we waited a long time, which I knew couldn't be good. The x-ray tech finally comes out and of course says she "can't" tell me anything. (I pleaded and begged until finally I guess she felt sorry for me and wrote down a number) The number she wrote down shocked me! She then proceeds to tell me that my family doctor is on the phone and wants to speak to me. Not good. Anyway, Jamie's "not too bad" Scoliosis was already at 36*! Yikes!

Trust your instincts. You'll find that you will have to speak up on behalf of your son often. Push for an x-ray and an appointment with a pediatric orthopedic who specializes in Scoli. Start searching for a doctor now and get at least a second opinion. Oh, and please know that you are NOT alone in this!

Mary Lou

Nanette77318
01-14-2009, 07:11 PM
That approach is likely not reliable. Nobody can eyeball things accurately that way.

Have your son bend forward at the waist and see if there is a hump on one side of his back. If there is, I suggest you get radiographs.

Yeppers! That's how I took the pictures, ..and to me, there is an obvious hump on his right side.

Pooka1
01-14-2009, 07:16 PM
Yeppers! That's how I took the pictures, ..and to me, there is an obvious hump on his right side.

Okay good work.

If there is an obvious hump, you don't need us yahoos to give you any further advice. :D

I think you have enough now to justify a visit to a pediatric orthopedic surgeon to get radiographs sooner rather than later. It's not an emergency but you don't want to miss any potential treatment opportunities.

Nanette77318
01-14-2009, 07:25 PM
you don't need us yahoos to give you any further advice. :D

You all are the BEST bunch of yahoos that I have ever come across!!!!! Seriously, I felt like I was having this conversation with coffee and friends today....I think I'll call his Pedi. tomorrow.....

mariaf
01-14-2009, 08:21 PM
I don't have much to add - you've gotten great advice so far but I wanted to welcome you.

I think you should trust your instincts - if you are seeing something then there probably IS something (although you won't know the extent until you get an x-ray).

Under these circumstances, I see it as you have nothing to lose by seeing a specialist. So, after your pediatrician orders an x-ray, if it shows that in fact your son does have scoliosis (of 10+ degrees), he should definitely see a specialist, in this case a pediatric orthopedic surgeon.

When my son was very young, I thought his son's back look "off", but initially my pediatrician brushed it off. My point is that general practitioners and pediatricians often know relatively little about scoliosis treatment.

Best of luck and please keep us posted.

jillw
01-15-2009, 08:46 AM
Hi Nanette, Welcome to the boards.

Not to beat a dead dog since others have already said it, but you need to get your son Xrayed NOW and not later. As Pooka/Sharon pointed out, a VERY important piece of information in determining what strategy or treatment to follow is getting a sense of the trend so you must get an xray now to see the starting point/baseline. Depending the size of the curve, they might choose to do nothing at this time. However, when your son goes back for the 4-6 month followup, they will be able to see if his curve was stable or if it's increased which is an important piece of information.

My daughter's curve was barely visible when she did the Adam's bending test (and therefore I am very thankful that our pediatrician did pick it up and did tell us to go to an orthopedist to get xrays). Yet her curve was almost 20 degrees. Maybe you'll be pleasantly surprised and hear that its only a minor assymetry of less than 10 degrees, but you need to have that information soon. Your son is lucky to have you as his advocate instead of blindly accepting the ped's advice!

By the way, I can relate to your feelings about seeing the "crookedness" of your son's shoulders when you look at him. I had never noticed it in my daughter and even when the pediatrician brought it up I didn't noticed (I didn't specificially look because the pediatrician downplayed it given how minor it seemed and my daughter's long hair covered her shoulder blades). However a couple weeks later...the day she was scheduled to go the orthopedist...she had a bathing suit on and her hair up and I saw the hump and had a visceral reaction. From that point on I couldn't not see the curve- it seemed so obvious, how had I missed it?

Anyway, good luck.

Nanette77318
01-15-2009, 11:43 AM
We are going for x-rays this afternoon.....
I feel good just saying that! We are going for x-rays.....woo hoo!

Okay, done.

Now, we wait..probably won't hear until Monday.....

Okay, so this morning (Friday) his Pedi called back! Cameron's curves are 10* thoracic and 9* lumbar. So..THAT is a good report. I am relieved and thankful that the x-rays happened! We will follow-up in 6 months or sooner if I notice any changes.

Thanks a MILLION times over for all the help in your replies!

Pooka1
01-24-2009, 10:31 PM
Okay, so this morning (Friday) his Pedi called back! Cameron's curves are 10* thoracic and 9* lumbar. So..THAT is a good report. I am relieved and thankful that the x-rays happened! We will follow-up in 6 months or sooner if I notice any changes.

That's great that the curves are so small. You have an eagle eye spotting it so soon!

Many small curves spontaneously correct completely per a large survey that was done a while back.

I certainly hope your son is in that group who needs no treatment and corrects on its own.

augemac
01-25-2009, 01:42 AM
Many small curves spontaneously correct completely per a large survey that was done a while back.

I certainly hope your son is in that group who needs no treatment and corrects on its own.

Question??

I never realized that small curves can correct on its own. My son is 13 and my husband and I noticed a small right hump. We took him to a orthopedic locally and he said it was nothing. Just a slight rotation. We were unable to see the xrays. Being that I had Scoliosis since 5, I have always check on my children. Well needless to say that Dr. didn't make me feel comfortable so we are off to see another in Denver.

I understand that if it is less than 10 degrees they do not consider it Scoliosis. But with a slight rotation more so obvious then curve, is that normal??

Pooka1
01-25-2009, 11:06 AM
No woo-woo involved either!

Heary and Albert, p.95 (http://books.google.com/books?id=cZu3_EezS_wC&pg=PA95&lpg=PA95&dq=graph+ais+risk+of+progression&source=bl&ots=JrfIzlun-W&sig=yMO2NXTKIZNeviIQdyGMXZrsYO4&hl=en&sa=X&oi=book_result&resnum=1&ct=result) (bottom right)

A 5-year prospective study of 85,622 kids found 1,436 kids with scoliosis.

Results over an average observation of 3.2 years:

Progression - 14.7%
Spontaneous improvement of at least 5* - 27.4%
Complete spontaneous resolution - 9.5%

In re eyeballing curves, I think they have to get fairly large to notice if they have no rotation. That is, it seems the rotation is much easier to eyeball than the curve.

Just w.r.t. my twin daughters, one was very rotated starting at a small angle whereas the other is barely rotated at a large angle. It was becoming obvious something was wrong with the rotated kid (shoulder blade protrusion, rib hump just standing up, etc.) whereas the other kid still looks extremely close to normal (slight deflection off centerline of the torso).

Nanette77318
01-26-2009, 02:13 PM
Question??

I never realized that small curves can correct on its own. My son is 13 and my husband and I noticed a small right hump. We took him to a orthopedic locally and he said it was nothing. Just a slight rotation. We were unable to see the xrays. Being that I had Scoliosis since 5, I have always check on my children. Well needless to say that Dr. didn't make me feel comfortable so we are off to see another in Denver.

I understand that if it is less than 10 degrees they do not consider it Scoliosis. But with a slight rotation more so obvious then curve, is that normal??

Well, I have no input for you, as you can tell...I am just learning myself!
BUT....I thought a few things were neat....1)we both have boys, mine is 13 in July. 2)my son also has visible rotation with a rib hump on the right and 3)my sister is named Adrienne....so...I feel like I can relate a little to you!

bscoli
01-26-2009, 07:16 PM
Hi - I'm glad the news from your son's x-rays showed small curves. I am familiar with some families who also had children in this scenario and waited six months for a next x-ray, only to wish they had rescanned sooner because curve progression was accelerated during a rapid growth spurt in this six-month window. You may want to ask your pediatrician about this. If you'd like me to connect you wtih one of the families who wished they'd not waited a full six months, please send me a private message.

augemac
01-26-2009, 07:51 PM
bscoli,

I am curious to see the link to those discussions if you know where they are. Would like to read their stories. I have a 13 year old boy with a slight right rib hump. I have set a appt with a Dr. in Denver for February 16. The local Dr here didn't even slightly impress me. He made it sound like I was paranoid! I know that I could see the hump. He said it isn't scoliosis and he didn't even do a full examination. Then I told him I wanted him to look and then he noticed a slight rotation and hump. I didn't get to see the xrays. So for all I know he has a slight curve and I don't even know. To my husband and I we thought we could see a slight thoracic and lumbar curve.

Needless to say can't wait til we see another Dr. because I don't want to wait. I know what it is like to go through this.

Thank you to all who have put input here. It is really different being a parent with a possibility of a child then myself going through it. Tough!!

bscoli
01-26-2009, 08:17 PM
This article may provide insight. If you want me to align you for a connection with this family, please snd privat3e message. http://www.wauwatosanow.com/story/index.aspx?id=765591

Nanette77318
01-27-2009, 10:30 AM
I didn't get to see the xrays.


Ya know, you can call the Dr.'s office that ordered the x-rays and ask that a copy of the report be mailed to you! I worked in a radiology office for years (before children) and you can even call the radiology facility (if the x-rays weren't done in the Dr.'s office)....and get the films in your hands. So, at least you can get a visual from the films.....

augemac
01-27-2009, 01:56 PM
Thank you Nanette77318. I think I will call because I want to see what they look like for myself. Great idea. I'll let you know!

Pooka1
01-27-2009, 06:29 PM
bscoli -
100% risk of progression without intervention

:confused:

This is clearly false.

bscoli
02-02-2009, 11:15 AM
bscoli -

:confused:

This is clearly false.

Sorry for the confusion. In my post titled "100% risk of progression," I shared a link to this article
http://www.wauwatosanow.com/story/index.aspx?id=765591

The article highlights a specific girl's experience with scoliosis and says that, "without therapy, at Allison's age and onset, the risk of progression would have been 100%. See below from article...

"There is great evidence that exercise-based approaches can be effective to reverse the symptoms and signs of spinal deformity," she said.

"The younger the patient finds out and the sooner they start therapy, the more likely it will be (that) they can prevent progression of the curve."

Allison has grown more than 3 1/2 inches in the last year but because of the intense therapy, has seen only a 5-degree curve in her spine.

Without therapy, at Allison's age and onset, the risk of progression would have been 100 percent, Marti said.

Pooka1
02-02-2009, 01:25 PM
Sorry for the confusion. In my post titled "100% risk of progression," I shared a link to this article
http://www.wauwatosanow.com/story/index.aspx?id=765591

My mistake. Apologies.


The article highlights a specific girl's experience with scoliosis and says that, "without therapy, at Allison's age and onset, the risk of progression would have been 100%. See below from article...

How do they know that? What was the curve when diagnosed and at what age? These are lay people talking.


"There is great evidence that exercise-based approaches can be effective to reverse the symptoms and signs of spinal deformity," she said.

Really? Where is it published? I'd like to read it.


"The younger the patient finds out and the sooner they start therapy, the more likely it will be (that) they can prevent progression of the curve."

The earlier you find out, the smaller the curve and we know smaller curves have less of a tendency to progress than larger ones. Here we see the problem with not having controls... some, maybe all of the people doing treatment with smaller curves wouldn't have progressed anyway. Yet because they were doing exercises and wearing a brace, they attribute any lack of progression to the exercise and/or brace. This is a really silly claim.


Allison has grown more than 3 1/2 inches in the last year but because of the intense therapy, has seen only a 5-degree curve in her spine.

SHE'S IN A BRACE!!!!!!!!!!!!!!!! Let's see what her curve does two years OUT of the brace. This article is a joke.


Without therapy, at Allison's age and onset, the risk of progression would have been 100 percent, Marti said.

Prove it. I bet they don't have a single radiograph.