View Full Version : not sure what to expect

08-13-2006, 08:33 PM
Hi! I have a 4 1/2 year old boy who was recently diagnosed via x-ray with scoliosis...he was at 15 degrees...slight left pelvic tilt....thoracic...between T4 and L1....we have an appt. next wk with a ped. ortho....what should we expect? Anyone else have a 4 year old with scoliosis? Thanks, Dawn

08-14-2006, 09:09 PM
Hi Dawn,

My son is 11yrs old now. He was born with congenital scoliosis (we saw the scoli on ultrasound before he was born). There are lots of variables with scoliosis. Scoliosis in small children is rare, and you should have fairly extensive testing to find out if there is an underlying cause. A GOOD pediatric orthopedist will know the correct tests he will need to have done. Does he have any other medical conditions that would contribute to scoliosis? You are in good company. Please let us know how the visit with the ortho goes.

08-15-2006, 06:34 AM
Thanks for the reply.....No, my son does not have any other symptoms of any other potential underlying problems. When he bends forward to touch his toes though, it seems to me that he has what almost feels like a muscular bump on the right side of his thoracic area...approx. where the curvature is....between his shoulder blades....not sure what that could be.....after reading online about the infrequency of scoliosis showing up in 4yr olds, I'm a bit concerned. Is he considered "infantile" or "juvenile"? We have an appt. with a ped. orthopedist on the 31st of this month....what tests should I push for? Dawn

08-15-2006, 04:43 PM
Hi Dawn,

When he bends over, does the bump look like this? http://www.iscoliosis.com/symptoms.html

The bump is likely because of the rotation of the spine - one side is rotated forward and the other back. Rotation is seen in nearly all scoliosis patients because the spine is so very 3-dimensional.

The classification of scoliosis depends on several things - does he have one or more vertebrae that are not formed correctly? If he does, then he has congenital scoliosis. If the bones of the spine are formed correctly, but curved, then he fits into the very broad idiopathic category.

The type of testing that should be done depends, again, on the type of scoliosis he has. If he has congenital scoliosis (especially in the lower spine) then a renal ultrasound is important to rule out any problems with the kidneys/bladder. A full spine MRI is often a good idea (not necessarily an emergency test) to make sure the spinal cord is healthy and there are no underlying spinal cord causes for the scoli.

These questions will be best answered by the PEDIATRIC (i hope) orthopedists you see on the 31st. Write down your list of questions so you don't forget what to ask. Ask specific questions that are important to your little man. Each scoli patient is different. The treatment options can vary greatly, depending on many variables.

Best wishes and keep us posted.

08-15-2006, 08:40 PM
Hi, Carmell

Thanks for the information...and your expertise....I really appreciate it right now....you have been a blessing! Dawn

08-16-2006, 01:40 PM
No problem. I wish you both the very best! Keep us informed on how things go.

09-01-2006, 06:39 AM

My 4 1/2 year old boy had his appt. yesterday at Children's (Pgh) with the ped. ortho. Basically, we don't know much more than before we went :(

My son doesn't fit into any of the typical categories for scoliosis for a 4 yr old boy. He had to do another xray standing up ( the last ones were taken laying on his back). He is at 20 deg., right thoracic. According to the dr., he doesn't fit the profile for idiopathic...he said most idiopathic is found in adolescent girls and is left thoracic. The dr. is leaning towards this being congenital. We go back in 3 mos. for more xrays, and poss. an MRI if the curve seems progressive.

The dr. mentioned neurofibromytosis ( sp??)....my son does have 3 "spots"....1 of which I know he was born with; the other 2 have "shown up" over the years. However, my husband has several cafe au lait spots, which is what my son's look like??!!

Basically, we are to watch and wait...has anyone out there had a similar experience?? I was at least hoping to come away from the appt. with my son in a "category" of scoliosis....

I'd appreciate any input anyone has! Thanks, Dawn

09-01-2006, 10:34 AM
I think you may need a second opinion. I couldn't tell where you were posting from.

In idiopathic scoliosis, there are several age categories. Infantile is diagnosed from birth to age 3, I think. Juvenile is diagnosed from ages 3 to 10. Adolescent is diagnosed from ages 10 to maybe 18(?) My daughter has juvenile idiopathic scoliosis, and was diagnosed at age 7, but I ran across a CAT scan done when she fell out of a tree at age 5, and the curve was visible to me, although it had progressed in the 2 years between.

Whether or not the curve is a congenital curve depends on the structural defects present. In idiopathic scoliosis, there is a structural defect, but no hemivertebrae(partial vetebrae that didn't form inutero, I think),etc. THe structural defect in idiopathic scoliosis is in the shape of the vertebrae. I don't know how hard it is to tell from an x-ray which it is. I have no experience there, but there are many on this forum that know a tremendous amount more than I do.

Adolescent idiopathic scoliosis(AIS)is diagnosed in both boys and girls, but progresses more often in adolescent girls to the point of surgery or bracing, if I understood correctly at our last appointment. (We had a short discussion because I rarely see boys in the office.)

A left thoracic curve is NOT common. In thoracic curves, right is most common.

I am concerned that this physician did not give you more information, and more accurate information.

There are others on this forum that can shed more light than I can on congenital scoliosis.

Shriners does a fantastic job. You might consider a second opinion at your nearest Shriners.

09-01-2006, 11:48 AM

my son is now 4 1/2 yrs old and has infantile scoliosis. he was diagnosed at 18 mos. he has an s-shaped curved - right thoracic and left thoracolumbar. i'd be happy to go into his history later if you want, but i really think that you need to go get a second opinion with another pediatric ortho. where do you live? is pgh = pittsburgh, philly??? i can recommend good orthos at both locations, but i'm not sure if i'm right about where you are. this ortho obviously only deals with adolescent cases of scoliosis. scoliosis in young kids is uncommon. i don't want to alarm you since your son's curve is low, but he has a lot of growing left to do, and it has the potential to get worse. as for the neurofibromatosis, were you told to see a pediatric neurosurgeon who could definitively diagnose this condition? in my humble opinion, a full brain and spine mri should have been ordered now, and will be if you end up going to a pedi neuro? i can't believe the ortho just let you leave the office after saying that and then not suggesting to get it checked out appropriately. :confused:

from the x-ray the ortho could have at least been able to tell if there is any congenital abnormalities = bony abnormalities of the spine including hemivertebrae (half or malformed vertebrae as cheryl mentioned, fused vertebrae, fused ribs, etc.

do you have a copy of the x-rays that were taken? if not, please call and keep a copy sent to you so that you can take them to another ortho. this way, perhaps your son will not need additional x-rays and less exposure is always good. you should be able to also ask for a copy of the report that your current ortho writes up. basically what i'm saying is that you should start a medical file for your son so that you can take it wherever you need to. people will not have to do repeat tests that are unnecessary if you do this.

anyway, please write back and let me know where you are.

mom to lucas and ruby
north of boston, ma


My 4 1/2 year old boy had his appt. yesterday at Children's (Pgh) with the ped. ortho. (this man is the head of the dept!) Basically, we don't know much more than before we went :(

My son doesn't fit into any of the typical categories for scoliosis for a 4 yr old boy. He had to do another xray standing up ( the last ones were taken laying on his back). He is at 20 deg., right thoracic. According to the dr., he doesn't fit the profile for idiopathic...he said most idiopathic is found in adolescent girls and is left thoracic. The dr. is leaning towards this being congenital. We go back in 3 mos. for more xrays, and poss. an MRI if the curve seems progressive.

The dr. mentioned neurofibromytosis ( sp??)....my son does have 3 "spots"....1 of which I know he was born with; the other 2 have "shown up" over the years. However, my husband has several cafe au lait spots, which is what my son's look like??!!

Basically, we are to watch and wait...has anyone out there had a similar experience?? I was at least hoping to come away from the appt. with my son in a "category" of scoliosis....

I'd appreciate any input anyone has! Thanks, Dawn

09-01-2006, 12:01 PM
Hi! We went to Children's hosp. in Pittsburgh .....should I try a Dr. who is within the same practice, or go elsewhere?? thanks, Dawn

09-01-2006, 12:17 PM
Hi Dawn,

Ditto what the others said. It doesn't matter one bit that the doc you saw is the head of any department - he obviously doesn't have your son's health in his best interest. Some of the information he gave you is deceiving to you. He seems to be comparing your son to teenagers with "typical" scoliosis. This shouldn't be the case.

As for xrays, standing xrays are usually more accurate, especially in children (patients) with very flexible spines. Being flexible is a good thing.

I also agree that your son needs to see a neurosurgeon or neurologist to rule out neurofibromatosis. I know several families who have this hereditary condition. Very manageable when treated correctly. Scoliosis is one of the side effects/conditions that can be associated with neurofibro.

If you are still unsure about who to take him too, my suggestion is to go to Shriners in Philly. They have specialists there who can rule in (or out, hopefully) the neurofibro issues and give you the specific details about his scoliosis and spine issues. You NEED to know if the scoliosis is congenital or idiopathic. You NEED to have an MRI done (full brain and spine) to make sure there are no underlying issues that you don't know about. Shriners has a collective group of specialists to help with this. Please contact them http://www.shrinershq.org/Hospitals/Philadelphia/default.aspx

Let us know how things go.

(P.S. - My intentions are not to sound like an alarmist. I just hope that you don't put too much stock into what the other ("Head" of dept or not) told you.)

09-01-2006, 12:22 PM
hi dawn,

i'm not sure if i would go to another ortho within the same dept. since you saw the head, then it is more than likely that the other orthos will have similar experience.

actually, i would recommend seeing dr. james sanders at the shriners hospital in erie. as you can tell from my previous post, i live in massachusetts, but we travelled to erie to see dr. sanders from the time lucas was 2 1/2 yrs old to now. lucas went through serial plaster casts to help control his scoliosis. his curves were initially 68o/45o at 18mos. first we went locally to children's in boston for a year and did bracing, but it was ineffective and we were unhappy with our care. that is when we decided to travel to erie since dr. sanders is one of two places in the us that do these serial plaster casts. in brace lucas is now 18o/14o. we're pretty darn happy. dr. sanders is a wonderful doctor and sees A LOT of young kids with scoliosis. please consider going there for a second opinion. here's the phone # to apply: 1-800-873-KIDS. here's a description on how to apply:

i'm still thinking that you should try to make an appointment with a pediatric neurosurgeon. do you think you could get a referral from dr. mendelson? i would follow up on that if it were me. actually, another aside about lucas, he was automatically required to have an mri done because of his age at diagnosis. it was discovered that he had a tight/fatty filum and had to have a detethering done. he had none of the other obvious symptoms of this condition besides the mri. that is why i'm pushing for the mri!


09-01-2006, 12:24 PM
carmell and i posted at the same time! hi carmell! i only suggested erie since it is closer to pittsburgh, but yes, i believe that philly has more experience with kids who have neurofibromatosis, if that is even what your son has. mri, mri, mri!!! :D


09-09-2006, 08:31 PM
Deshea, Carmell, & Cheryly gave you great advice. I don't have much to add to what they already said. I agree that Shriners in Erie is a great option for you (that is where we take my son), but I do know of a Doc in Pittsburgh that has trained with Dr. Sanders and I was VERY impressed with him and his beside manner is great! I am not sure if he is set up yet or not to cast in his practice, but it is worth checking him out.

Mark Sangimino
490 E. North Avenue
APB Suite 400
Pittsburgh, PA 15212

09-13-2006, 08:07 PM
Hi! I rec'd the doctor's written report from my son's first scoliosis check up. Here is an excerpt: "In assessment, I do agree this boy does appear to have a structural scoliosis. The etiology of this is a little bit hard to know. A 4 yr. old boy does not really fit the pattern for adolescent idiopathic scoliosis. I think he perhaps may have some type of a constitutional scoliosis."

Ok, here are my questions: 1. Does "structural scoliosis" mean congenital or idiopathic? 2. What is "constitutional scoliosis"? 3. Aren't there several age group categories for idiopathic scoliosis?

Thanks...I'd appreciate anyone's expertise out there... Carmell, what do you think?


09-14-2006, 09:28 AM

i know you asked carmell, but just the way that the report is written means that this ortho does not know how to deal with infantile/idiopathic or congenital scoliosis (referring to adolescent idiopathic scoliosis). you definitely need to get another opinion.

my thinking structural = congenital, but you would think the ortho would have noted fused or hemi vertebrae or fused ribs from the x-ray.

constitutional??? no idea

yes, there are different categories of idiopathic scoliosis by age of detection -
0-3 yrs infantile
3-10 yrs juvenile
10 - __ yrs adolescent

hope this helps.


09-14-2006, 11:50 AM
I agree with Desheah. My daughter is 6 with idiopathic juvenile scoliosis. Granted it is more common is girls than boys but there are juvenile boys on this forum with it.

My advice is to get as many opinions from orthos that specialize in juvenile scoliosis as you can. And the parents on this forum are a HUGE source of info.

My daughter is using Spinecor and having great results w/ 100% compliance


09-14-2006, 02:19 PM
Hi Dawn,

These are my thoughts... FWIW

First, is this report from the radiologist or an orthopedic surgeon? If this is what an orthopedist wrote, I'd be finding a second opinion sooner than later. The report is really of little value - there is no concrete information for you to go on. If the report was done by a radiologist (which is what I'm assuming) then don't get too worked up until you've talked with a pediatric orthopod who has actually seen the images.

That being said, these are my opinions on your questions...

1. Does "structural scoliosis" mean congenital or idiopathic?

Structural typically means congenital. There is something structurally different about the makeup of at least one vertebrae, which is a congenital issue. Remember that the medical world is more an art than a science. The use of terms is not an exact science. Depending on who you are speaking with and what the references are, you may get very different input, but the same meaning. Not very clear and precise, but that's how things go, I've found. You can have 5 different "names" or "labels" for one condition. Doesn't change the condition itself or the proposed treatment plan, different people just call things differently.

All that said, you need to find someone (pediatric ortho) who will show you the xray and tell you if there are structural abnormalities (congenital) or if the spine is formed correctly just curved (idiopathic).

2. What is "constitutional scoliosis"?

This goes back to my ramblings above - my guess is that this "doctor" who dictated the report is suggesting there are constitutional or environmental reasons for a curved spine. Very vague comment. Doesn't mean anything medically. For teenagers who have idiopathic scoliosis, some docs will document if there are any environmental factors that would constitute scoliosis - I'm guessing the doc doing the report likes to talk in circles. The report you posted means very little, technically (I've already said that).

3. Aren't there several age group categories for idiopathic scoliosis?

Deshea already listed these.

My suggestion is to talk to a ped. ortho. who will explain this in English to you, after seeing the image. You really don't have much information to go on. You NEED to know more than what they are reporting. Do you have a ped. ortho. who will be reviewing this image? Do you have a followup to ask questions? He needs to be physically examined by a ped. ortho. - do you have an appointment for that?

Good luck and let us know what you find out.

09-14-2006, 03:27 PM
Hi, Carmell! Thank you for taking the time to give me all of those details. You have been a wonderful help. This excerpt was taken from the report written by the Ped. Orthopedist who examined my son ( and looked at his xrays) at Children's. I don't know what the radiologist's report said. I'm waiting for a copy of his xrays to be sent to me.

I called Shriner's in Erie today and am waiting for one of their "care specialists" to get back to me on Monday about setting up an appt. with Dr. James Sanders. They were very nice on the phone and I look forward to meeting with Dr. Sanders....do they only take extreme cases though? Not sure if they'll want to see a 4yr old with only a 20 deg. curve??


09-22-2006, 04:40 PM

They will take your case no matter the severity. You have made a good choice for your care.

09-24-2006, 07:00 AM
Hi, everyone!

We have an appt. for early November for my son to see Dr Sanders at Shriner's in Erie. The dr. does not want us to do an MRI until he takes a look at him then.

He seems to have progressed as far as the scoliosis goes in the past week since I spoke with the care specialists at Shriner's. Is this possible? At the end of August when he had an x-ray he was at 20 deg. He has more of a "hunchback" appearance to me and is limiting (slightly - kind of a gradual turning...almost a careful movement instead of a natural one)how much he turns his head from side to side and will not tilt in backward; he'll look up at me with his eyes.He told me yesterday that the back of his neck hurt, and he wet the bed last night for the first time in about 1 1/2 years ( he has been night trained since he was 3 - he is now 4 1/2). I know to watch for bowel changes, what about bladder changes?

I am trying not to be "overly hyper" and "overanalyze" things; sometimes it's hard to determine if you really have a concern??

I am probably going to call Shriner's back on MOnday. Can anyone share any similar experiences...or have any words of wisdom to share?

Thanks, Dawn

09-24-2006, 08:48 AM
I would definitely call back if you are seeing changes that quickly...it can progress quickly for sure. My son stayed at around 26 degrees for several months and then - BOOM- he went to 36 degrees last October. Four weeks later in November he went to 43 degrees.

If you are seeing bladder issues, that would definitely concern me. Sorry if this has been asked before and you already responded, but has he been checked for a tethered spinal cord? I know that can cause bladder issues.

I'm surprised Sanders didn't want and MRI though. They wouldn't even look at Ian until I had sent them his MRI films and report.

09-25-2006, 06:38 AM
No, he hasn't been checked for a tethered spine. What other symptoms are there besides bladder changes? Anyone? Dawn

09-25-2006, 07:59 AM
Here are the symptoms:

The course of the disorder is progressive. In children, symptoms may include lesions, hairy patches, dimples, or fatty tumors on the lower back; foot and spinal deformities; weakness in the legs; low back pain; scoliosis; and incontinence


green m&m
10-09-2006, 12:05 AM

I have neurofibromatosis so I can answer any questions you may have... so ask away :)

I'd definitely get your son checked out by an NF specialist, you can find one in your local area by going to www.ctf.org and click on "find an NF doctor" link.

Charity's Mom
10-10-2006, 09:39 PM
I am not Dawn, but she is a close friend of mine. Luke went in for his MRI on Friday (Oct 6). By the end of the MRI several neurosurgeons were in the room. To make a long story short, Luke had a tumor growing inside his spinal column. It was about 6 inches long. It ran from the cervical region down the thoracic region. They were able to remove most of it on Saturday (Oct 7). He is still at Children's Hospital in Pittsburgh. They will be getting the pathology report on Thursday. Please keep their entire family in prayer during this especially difficult time.

10-11-2006, 08:17 AM
Oh my gosh! My heart sank when I read this! Please let us know what happens and I'll be thinking of them and praying that the the tumor is benign and Luke makes a complete recovery.

10-11-2006, 09:22 AM
charity's mom,

thanks so much for the update. i'm so sadden to hear that it was one of those rare cases though! :( i am praying for luke, dawn, and their entire family. i hope that luke is recovering well from his surgery. please let us know how things are going . . .

my best,

10-11-2006, 09:33 AM
So glad to hear that they got Luke in earlier than November for the MRI and were able to schedule the surgery to remove the tumours so quickly!

All our best wishes for his safe recovery,

age 47
posterior surgery 7/24/07
for S curve 70/76
30 degree correction

10-23-2006, 07:03 PM
I know you don't know which way is up right now. I am so sorry that this was so catastrophic. I can't believe it.
I am so glad you were so vigilant and persistent in getting Luke seen and cared for. I am so glad you trusted your instincts.I am grateful for these expeirienced women on this forum that knew enough to help you.
They have helped me tremendously, too.
Let us know as soon as you are able to, how you and Luke are doing.
We will be praying for you.
The kids and I pray together every morning and you will be on our hearts!
Big Hug,

02-20-2008, 02:26 PM
Hi, all! My son has had 2 surgeries, been thru several rounds of chemo, and has worn a milwaukee brace for 14 months now. He was just fitted for a new brace, and the "brace guy" ( affiliated with a Shriner's hosp) was unable to get the correction he wanted for the kyphosis and said they suspected his curve has become "rigid"...what exactly does this mean?

I haven't posted for some time because the scoliosis end of his care has been on the back burner, but now it's time for me to start researching again, given this latest potential development.....Anyone? Carmell? We still have to see the orthopedist again to confirm/deny the rigid diagnoses....but thought I'd do a little investigating in the meantime.

02-21-2008, 12:46 PM
Hi again, Dawn,

Sounds like you have been busy the past year and a half. Hopefully your son is healthy and able to work on scoliosis/kyphosis treatment now.

A rigid spine means there is little flexibility in the ligaments/disk space between the vertebrae. If he were laying down, can they manipulate his back to a more correct position? If not (or if very little) then they would label his spine as rigid.

When is your next appointment with the ped. ortho? I know the Erie Shriners has been going through changes in surgeons. Would you consider going to Shriners in Philly? They may have more experience successfully treating kids like him. He's still very young with lots of growth remaining. You want to find someone who will be able to follow him for years to come and give you the best recommendations to meet his unique needs.

Kyphosis (the forward bending, hunchback position) is often more difficult to treat than scoliosis (side to side curve of the spine). When you talk with the doc again, make sure you understand the kyphosis condition and understand the long term "plan" for him. Hopefully someone will be able to explain it to you so you understand well.

Take care and keep us posted.

02-21-2008, 02:08 PM
Hi Dawn,

I just wanted to comment on Carmell's suggestion to consider going to Shriners in Philly. I know there have been some changes in Erie and it's true you should be with someone who will be there for the long haul and have a long-term plan. You'd be hard pressed to find someone with a better vision on what's best in the long run for kids with complex spinal issues than Dr. Betz. He's always involved in the latest technology - whether it's VEPTR II, VBS, etc. He's one of a small group of orthos around the country that seem to be "a cut above" the rest. He has been overseeing my son's care for four years and we couldn't be happier with him.

Good luck!