Congenital Scoliosis results only from birth defects. This is not the same as idiopathic scoliosis, where someone has a spinal curve, and they don't know why.

In congenital scoliosis, the spinal curve can be a real problem. It's not treatable with a brace since it is caused by a birth defect of the bone, i.e. vertebrae. The curve usually progresses much faster than a person with idiopathic scoliosis, and after the curve reaches 40%, this usually indicates that surgery is needed. Also, many times people with congenital scoliosis have other associated birth defects as indicated in the "VATER association."

If you have or know anyone with Congenital Scoliosis, please post your message here for the time being. People with Idiopathic Scoliosis, please start a new thread. Thanks!

Hi Kippy6,

I have congenital scoliosis also. I think I posted to your "Suggestion for a New Forum" post. I'm currently trying to find treatment for a tethered cord. I'm just finding out that a fusion done in '70 did not heal with solid bone, so when they removed the supporting rods in '87, the added curve further stretched my already tethered cord. I'm not sure if they will try and re-fuse in hopes of alleviating the stress on my tethered cord, or go for the untethering first, then the possible re-fusion. I've seen four NSs, and so far, each has sent me somewhere else. I've been to Cincinnatti and currently am seeking help in Chicago. All involved have said that I need this surgery, yet it seems no one will agree to perform it. In the mean time, I'm showing deterioration of motor functioning (I was diagnosed with a re-tethered cord last Aug.).

I have many abnormalities of the spine, and am just now (at age 44) educating myself about some of them. As a matter of fact, I only recently learned that my scoliosis is congenital. I'm a little embarassed to admit that I didn't know that, but this has been such a part of my life growing up, I guess I was complacent about it. Also, back then, not much was explained to the child in a way that they could understand.

How are you doing? You never mentioned whether you, yourself, have congenital scoliosis. I'm assuming you do. I hope to be able to share information with others on this thread....'cos I've gotta lotta catching up to do! http://www.healthboards.com/ubb/smile.gif

Thanks for starting this!......Teri

Hi Franjo.

I have a 10 year old daughter w/congenital scoliosis. She has a 40% curve that we're still watching. She came real close to getting surgery when she was about 4 yrs. old....

Have you ever heard of Dr. Winter or Dr. Lonstein?

I had a cousin who died from scoliosis years ago. She never received any surgeries to correct her scoliosis. I believe she had a C curve. They lived in West Lebanon, Indiana. She was in a wheelchair from a very eary age. I don't know much about her situation, as I was still in school when she passed away, and she was about 15-20 years older than me. I'm 36 yrs. old now.

My 27 month old daughter has congenital scoliosis. She will have back surgery in August to remove a vertebrae in her lower back. Then in January, she will have titanium rib replacement surgery. Does anyone know anything about this?

[This message has been edited by moderator2 (edited 05-15-2003).]

We found out 4 months ago that our 3 year-old son has congenital scoliosis in his neck. He has a number of fusions and deformed cervical vertebrae. We noticed his shoulders appeared lopsided, Dr thought he has Sprengle's in his shoulder blade. After xrays and 4 hour MRI scan, they determined he has Klippel-Feil syndrome. He has a good prognosis. He has 2 healthy kidneys(some with KF only have 1 or deformed ones). As of now his spinal cord is no way compromised. He has a 30 degree C curve to his neck. It is a wait and see game. If the curve stays the same, we may have to do nothing. If it changes he possibly will need fusion surgery, which would limit his range of motion in his neck even more. He has almost complete range now, but even 1 more fusion would drastically change that. Doctor said this is very rare. I wish we could find a doctor with some experience with this!

Hello,

This is my first post to this board and I am wondering if there is anyone who has a similar situation to my daughter's.

She is 12 years old and just 2 weeks ago at her yearly physical, she was diagnosed with scoliosis.

Her x-rays were taken at that appointment and 2 weeks later (this past friday) we were at an orthapedic specialist taking more x-rays.

Her spine has a number of deformities and the specialist has told me this is congenital scoliosis. She has an "s" curve starting in the thoracic area. The first curve is 55 degrees and the second (lower) is 40 degrees.

She is scheduled for an MRI and has been refered to a spine specialist. Both of these appointments may take up to 4 months to get in. There was no mention of a renal ultrasound. She will also have a follow up appointment with the orthapedic specialist in 2 months.

A bone density x-ray was taken and is showing approx 1 - 2 years left of growth. She has already reached puberty.

Bracing is not an alternative right now as I've been told it will not be effective.

What puzzles me is the speed of which this has happened. She has been to other doctors in the past year and a chiropractor as well. She has also been in gymnastics. No one had made any mention of abnormalities. The orthapedic specialist has mentioned that she has very good balance with mild to moderate (humps?) on her back.

I'm concerned about the progression of this. She is considered a candidate for surgery but I am informed that there is a greater risk on congenital patients than idiopathic.

I would appreciate anyone's experience with this.

Thank you.

My daughter wasn't diagnosed with any thing at birth except for being pigeon toed(club feet). Her dad just wouldn't let me look into anything and finally when she was 5, I left him. I wasn't able to take her to many specialists until I got custody of her at the end of 5th grade and that is when we found these things which are all Congenital(birth defects): scoliosis,
spina bifida occulta, spondyliothentisis(slip disk),
cavas feet, ADD, TMJ(jaw disorder) and one jaw is smaller than the other(all of one side of the body seems to be larger than the other), extra bones in all the toes which extends them and makes them longer, hip abduction, Osgood-schlatter's disease, joint pain and sensations of water running through the spine, fingers, etc. And just 2 wks ago, the ADD diagnoses was changed to Right Hemispheric Learning Disorder which had been misdiagnosed. This new disorder evidently comes with spinal problems. I don't know much about it other than my daughter's problems. See other posts of mine at: Rare Disorders, Spinal Disorders, and other places on these boards. She still doesn't have an over all diagnosis yet.


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Wislodgers:

I just read your posting regarding your son. We have an eight year son with "S" curve scoliosis and "missing" neck bones (he was diagonosed at 12 months after a routine check-up)and has been monitored by a specialist since his initial diagonosis. However, the physician does not appear to be concerned with the neck and has never directly mentioned any type of possible treatment for the problem. Our son has full range of motion, but his shoulders are lopsided. As he has grown, the lopsided appearance has of course become more noticeable. I would appreciate any information that you may have regarding this situation.

Thanks.

Hi dwiatrek - I just happened to be doing a search on the web, and ran across my old post on this board. How is your child doing. Has he/she had surgery yet? Why do they have to replace ribs? My child is also missing ribs, and I was always under the impression that was not an issue for my child. I suppose it would depend on a lot of other factors though.

My daughter is 11 now. I've noticed that when she runs, her left foot turns in as if she is pigeon toed. Her foot turns in so badly, it looks like she is going to trip with every step. I'm wondering if this has anything to do with her scoliosis. She has 2 hemivertebrae that we are watching. She is going through puberty, so I pray that her curve will not progress any further. I will say a prayer for all of you who are going through surgeries right now. I feel for you all.

Best Doctor for Congenital Scoliosis:
When I found out my child had congenital scoliosis, I did months of intense of research as to the best doctors. I found a Dr. Lonstein at the Twin Cities Spine Center in Minneapolis, who is an expert in congenital scoliosis. He is also one of the authors of Moes textbook of scoliosis and other spinal deformities.

My husband, daughter, and I flew up to Minneapolis from Georgia to see Dr. Lonstein. One surgeon in Georgia was trying to operate on my daughter right away at age 4, and my DH and I decided we needed a 2nd opinion from an expert. Dr. Lonstein said to wait to see if the curve progressed, and we've been waiting ever since. No progression so far, but now she is starting puberty... only time will tell. We are so glad we we went to see this guy. After months of research, he appeared to be the leader in the field of congenital scoliosis along with Dr. Winter, who had retired.

Best Doctor for Congenital Scoliosis:
When I found out my child had congenital scoliosis, I did months of intense of research as to the best doctors. I found a Dr. Lonstein at the /twin Cities Spine Center in Minneapolis, who is an expert in congenital scoliosis. I would have used Dr. Winter, but I believe he had already retired. He is the founder and past president of the Scoliosis Research Society. He is also one of the authors of Moes textbook of scoliosis and other spinal deformities.

My husband, daughter, and I flew up to Minneapolis from Georgia to see Dr. Lonstein. One surgeon in Georgia was trying to operate on my daughter right away at age 4, and my DH and I decided we needed a 2nd opinion from an expert. Dr. Winter said to wait to see if the curve progressed, and we've been waiting ever since. No progression so far, but now she is starting puberty... only time will tell. We are so glad we we went to see this guy. After months of research, he was the one who appeared to be the leader in the field of congenital scoliosis.

Dr. Lonstein may be retired now. You'd have to check -- but that office/hospital is supposed to be state of the art regarding congenital scoliosis treatment. Many of Dr. Lonstein's and Dr. Winter's associates come very highly recommended are very good as well. Also, look at the textbook to find names of doctors (front cover).

i also had club feet and had to wear leg braces for 2 years when small child. i have congenital scoliosis as well as kyphosis,lordosis,torticolis,signs of osteoporosis,cervical
and thorasic radicultis. my parents thought nothing of my club feet or doctor saying had scoliosis. now they feel guilty, biut besides that. my curve is to the left which is very rare and more complicated than a curve to right. i live in florida and am finding it hard to find a someone speciallized in the diseases with out driving hundreds of mile that i cant do. god bless you all and may you find some relief.

Congenital Scoliosis patients - does anyone have any updates?

My daughter has congenital scoliosis. She is seven and we have been monitoring her for three years. I read the post on Dr. Winter and was wondering if it is worth the trip. We are also from Georgia. I think we have a good DR., but was wondering if we should get a second opinion.

Hi there. We live in Forsyth County. Dr. Winter is no longer practicing. He has retired. But I think if you go to a doctor who is recommending surgery, it might be worth the trip. Two doctors from 2 different practices were recommending surgery when my daughter was small. Children's orthopedics at Scottish Rite was one of them. We are so glad made the trip to see Dr. Winter, as he said to wait.

Since that time, we found a doctor at Emory at the Emory Spine Clinic who agreed with Dr. Lonstein and said that all she needed was to be watched. So far, we've been with the Emory Spine Clinic for about 7 years, and we love it. They emphasize utilizing all other methods before surgery. Surgery is kind of a last resort.

Hi Kippy6 and thanks for the reply. We live in Floyd County. We went down to the Emory Center yesterday and met with our Doctor (Horton). He said that all looks well and we will continue monitoring once per year. She is 7 now and the scoliosis is stable. He has seen no changes for the past 3 years. He seems to be the most concerned with changes that may occur with puberty. I've been very impressed with our Doc every time we have met him. He seems very conservative. I guess I just get a little nervous every year when it is time for us to go see him. I want to make sure we are doing what is right!

Can anyone tell me who has replaced Dr. Winter at the Minnesota Spine Center?

My 13 year old daughter has a hemivertibrae at T11 and a butterfly vertibrae at T6. We've been to see 4 pediatric scoliosis experts, and gotten 4 totally contraditory opinions about whether or not she needs surgery, and what kind of surgery she needs. Her curve is currently 40 degrees and she has about a 2 inch rib hump deformity that wasn't visible 6 months ago.

We are in California, but I would be willing to go anywhere to see someone who really understands congenital scoliosis and not just treating it the same as idiopathic scoliosis.

Thanks in advance for any replies

Sheri (Patty's mom)

I have looked at my records, and we actually went to the Twin Cities Spine Center in 1998. I have records that we saw Dr. John Lonstein there (not Dr. Winter). John Lonstein was the author of the Moes textbook of Spinal Deformities... and Dr. Robert Winter was the co-author. Both doctors are leaders in their field. I believe Dr. Winter retired. See if Dr. Lonstein is still there. He was very good. Another option is Emory Spine Center in Atlanta, Georgia. If you read about them, they emphasize in exploring all other options before considering surgery. I'd try Dr. Lonstein first though. If you can't get Dr. Lonstein, an ideal match would be someone who trained under Dr. Winter.

Don't forget to look at your doctor's curriculum vitae, and find out what research they have done...and how many surgeries they have performed of the one they are recommending.

I have been looking to get in touch with Dr. Winter since he did my surgery and ask him some questions, does anyone know how to get in touch with him via e-mail or anything else? He did my surgery when I was in the 9th grade and I am now 33 years old. Also I know a doctor who studied under him who resides in Little Rock, Ar. and his name is Dr. Macarthy(SP)! I saw him after I returned home from MN. I hope that helps the women who was looking for the person who replaced Dr. Winter. I really need to find Dr. Winter and have been searching for some time!!! :wave:

He was my Dr. too, I think he died, I'm sorry to tell you. I'm not for sure on that. I'm 25 now and I was 7 when he did mine. It's nice to meet you, though.