Congenital Scoliosis

[CWTL]

Did I actually finally find other parents out there with children with congenital scoliosis? I have been feeling quite isolated and confused. I have a 11 mon. old son with many spinal abnormalities including several curves at the lumbar/thoracic/cervical levels caused by hemivertebrae, fused ribs, fused vertebrae, spinal bifida occulta. My son is behind in gross motor development. I am really worried about his future.

[Carmell]

Welcome CWTL,

You are absolutely not alone! I have a son (Braydon, turned 10yrs old yesterday) who was born with severe congenital scoliosis, and other things. Today he is doing fabulous! If you saw him, you would never know what his little body has been through. I'd be happy to share our experiences with you. Braydon had fusion surgery done at age 11 months. He then had a tethered cord release surgery at almost 4yrs old. He had VEPTR (Vertical Expandable Prosthetic Titanium Rib) placement at age 6yrs old. He is doing very well.

Feel free to email me. boulderfam@hotmail.com I'd love to share what I know about congenital scoliosis, SBO, etc. Has your little one had his kidneys checked? Has he had his heart checked? Does he have any other medical issues that may complicate his scoliosis? Also, I have a webpage with some of Braydon's medical history on it. You can see his xrays and how his scoliosis has progressed. http://carmellb-ivil.tripod.com/myfamily/

Take care and I look forward to hearing from you! These kids are unique, but they have lots of love to give. You are not alone.

[Pips]

This may be of no help to you but I am 42 and was born with spina bifida along with other congentital spinal deformities.

My motor control is not as good as it might be but I walk and swim and do all sorts of other things. Until my curves got too bad (and associated pain) I held down a busy job and I'm happily married.

Given the medical advances in the last 40 years - please try not to worry about the future for him. The human body is a wonderful thing and there usually turns out to be a way around most problems.

Good luck with everything.

[twinsmom]

I totally understand how you feel. We found out our son had congenital scoliosis at 6 mo. He's now 16 mo. and they are looking to do surgery. Our Dr. had scheduled spinal fusion for him but we are going to Shriner's - Ironically, on the day that the surgery was scheduled for. We know that there are new treatments available and Shriner's is doing a lot of the research. My son has a twin sister who is fine. Funny thing is, he's the climber and the toughest to keep in control. He has progressed in the curve about 4 degrees in 6 mo. and has formed a compensatory curve in the same degree. We're terrified... of course... about surgery, his recovery, his future, etc. However, we're learning a lot and we know there is lots he can do. Fortunately, all we have to worry about is scoliosis and Klippel Feil syndrome. In my mind, he has every chance in the world to be a normal kid and successful adult. So many children have so many worse problems, I think we're fortunate. My son is the friendliest and most energetic, happy kid. We'll all get through this. Keep your chin up and educate yourself the best you can. Email me anytime for support. Good luck... and I'll share what we learn at Shriners. (By the way, Brayden has a hemivertebrae as well)

[bubby's_mom]

I am new to forums but i could definitely use some support and advice. My 4 year old boy was just diagnosed with congenital scolisis. Apparently he has a deformed vertibrae. I am terrified and confused about how this is going to affect his life and growth. he is so lively and energetic and i dont want him to be stifled because of bracing but i also dont want his curve to progress. The pediatrician told me his curve was 28 degrees. Is that serious?

We have not yet met with the orthipedic surgeon for a consultation, the closest
one is about 4 1/2 hours away.

I feel a little angry at my pediatrician. i had brought this concern to him 2 1/2 years ago when i noticied that his shoulders were at noticably different heights and he told me "there is nothing to worry about, sometimes kids are just uneven" I cant help but wonder if we could have had this resolved by now. Are my expectations unrealisitc? Will this be a life long situation for him?

Any advice or words of wisdom would be helpful

Thanks
Kris

[Kindygirl]

Hi, I hope you do not mind my email but you seem to have some past experience with congenital scoliosis. My son is 7 years old and has severe scoliosis along with arthrogryposis. His future looks like more surgery is needed but I am nervous and unsure what route to take. Here is a little about himAll About Nicholas as well.
He was born with a 33 degree curve in the center and a 20 or so compensatory curve at the neck. His neck curve, thus far as not worsened or been an issue. By 11 months we attempted detethering his spinal cord in hopes it would help but it was unsuccessful. By 24 months of age, he underwent an AP fusion because his spine had progressed to 77 degrees. His own ribs were used for bone grafting. After surgery, his spine was reduced to 52 degrees. It has slowly worsened over the last 5 years and as of last Thursday is now back at 72 degrees. I am so devastated because the AP fusion was so traumatic for him. The recovery was awful. The orthopedist at Emory Spine Center in Atlanta (which is where we live) has now told us that he needs rods in his back. We are to go back on Dec. 1st, 2005 to find out when that surgery will be.
If there is anything you can tell me to ease my mind I would so appreciate it. I am a very worried mom.
Kathryn

[conni60640]

My son Billy has congenital scoliosis also, from a tilted pelvis and hemivertebrae. He has a 40 degree lumbar C curve. He also has multiple birth defects as a part of Caudal Regression Syndrome/Sacral Agenesis and VACTERLS association.

You can see Billy and his issues at our website.. http://members.tripod.com/conni60640-ivil/id16.html and you (or anyone) can email me at conni60640@aol.com .

[maz]

Hi My son was born with 2 very bad curves of the spine he also has aspergers and few other mina problems . But I would just like to say my son under went major surgery when he was 10 and had a very long road to recovery .. If you could see him now or chat to him he would tell any of you that all the suffering for him and me and the pain he went through it was worth it all ... he wore his braces from a little one to the age of 11 but as the curves just kept going moving more and more he could not hardly breath and the that was when it was decided by the doctors of the stanmore royal national orphapidic hosptial in middlesex england that the operation had to be done ... so please dont give up have faith it worked for my child and im sure it will work for yours

many regards maz

[maz]

Hi, I hope you do not mind my email but you seem to have some past experience with congenital scoliosis. My son is 7 years old and has severe scoliosis along with arthrogryposis. His future looks like more surgery is needed but I am nervous and unsure what route to take. Here is a little about himAll About Nicholas as well.
He was born with a 33 degree curve in the center and a 20 or so compensatory curve at the neck. His neck curve, thus far as not worsened or been an issue. By 11 months we attempted detethering his spinal cord in hopes it would help but it was unsuccessful. By 24 months of age, he underwent an AP fusion because his spine had progressed to 77 degrees. His own ribs were used for bone grafting. After surgery, his spine was reduced to 52 degrees. It has slowly worsened over the last 5 years and as of last Thursday is now back at 72 degrees. I am so devastated because the AP fusion was so traumatic for him. The recovery was awful. The orthopedist at Emory Spine Center in Atlanta (which is where we live) has now told us that he needs rods in his back. We are to go back on Dec. 1st, 2005 to find out when that surgery will be.
If there is anything you can tell me to ease my mind I would so appreciate it. I am a very worried mom.
Kathryn

hi
Kathryn .. my son had surgery at the age of ten with rods and he now amazing and they used his ribs as well but i wish i could show you him now you would not think he has rods he is now 18 yrs old ..hope this helps
maz

[dancerchick15]

hi! i just read all the posts here and thought my point of view might be helpful. i'm sixteen and have had scoliosis since birth. i had a anterior and posterior fusion of twelve vertebrae when i was three. this significantly stunted the growth of my torso, so it is interesting to read about all the growth rods now. what a bright idea huh? i know you are all worried about your children's futures and rightly so, but i thought i might give you all a little reassurance. after surgery i had to lie flat on my back for six months and was expected to wear a brace until age sixteen, however they received such a correction that i didn't have to wear it after age eight which was a miracle in itself. i still have a curve of around fifty degrees but really it didn't worsen much even through adolescents and i have virtually no pain. i do have a rather prominant rib hump, but unlike all the complaining teenagers with thirty degree curves, i've been dealing with it my entire life. i know how to carry myself with it, what clothes to wear and how to talk about it and that is kind of a blessing with congenital scoliosis, it is a fact of life not a big, bad change. i have been a tap and ballet dancer since age five and dance competitively and am a saxophonist and drum major. my scoliosis also led me to work harder at studying at a young age and i think it was a blessing as i excel in school. i even spent the summer studying government at yale university! even though it is unfortunate, growing up with severe congenital scoliosis taught me a lot about confidence and compassion for others. i don't judge people because i wouldn't want them to judge me for my back. i know it seems hard right now, but your kids can have a "normal" and fullfilling life. you can write or email me whenever as i'm excited to see someone finally talk about congenital scoliosis.

[Carmell]

Hi Dancerchick,

Thanks for your uplifting and positive post! It's great to hear success stories like your's. I wish you the best in all you do in your life. I'm sure we won't have to worry about you. You are doing a great job.

I'm glad you posted about having early fusion and how it compromised your trunk height. Hopefully with the new methods of treating very young children with scoliosis, the disproportion of trunk and limbs won't be as significant. Medical technology continues to improve quality of life.

Best wishes to you!

[Dee225]

You are indeed a breath of fresh air..what a great outlook you have. Reading your post brought back many memories. I had the same sugery (in the dark ages , at age 7...now 38 years old. I did the cast (10 months flat on my back and then 6 more months wearing at that time a plastic body jacket (experimental at that time). The fusion significantly stunted my torso growth also (some 8 to 12 inches of projected height). Played everything from sports, weight lifting to playing snare drum (35 pounds including the harness.. back then) in the marching band in high school. You being a drum major know how weightless those drums and harness are now...lol. Anyway I love your attitude about life and congenitial scoliosis.

Keep spreading your sunshine to others like us and helping people understand it is not a death sentence or curse or the the end of a normal life. I have a slight rib hump I but I've always felt I am blessed because there all those that can't even walk or just do simple everyday things.

God bless You!
Dee That growth rod.. man things have come a long, long, long, way!!

[Andrew Bryce]

i would like to give you some advice about your son. i am 56 years of age. and i have lived a full life. i have lived with scoliosis foe the last 40 years. i still get a few aches and pains your son can have a full life too.

[dancerchick15]

hey, you guys are so nice! its interesting to talk to someone who also has had congenital scoliosis. dee, its especially unique to talk to someone with stunted torso growth as well. this is a site with a lot of kids worrying about if anyone will notice their rib humps and no one seems to understand this concept. if u don't mind i'm just really interested in this, how tall are you? i'm four ten and i think i'd be pretty tall if it wasn't for my fusion because i have super long arms and legs. i sit about as tall as my five year old cousin. sorry if this is too personal, but it's just exciting to finally talk with someone who understands this. well have a great day and i'll hear from you soon~
alex

[lwilson]

My 14 mo. grandson just had surgery at Vanderbilt Children's Hospital a week ago today. His curviture was 53 degrees when they did the surgery and it had progressed from a 32 degree a few months before. The doctors removed 5 discs and did a bone graph with one of his ribs. He is in a full body cast and will be for 2-3 months. Then he will wear a brace for a period of time. Most of the postings I've seen the children were not casted, but were in a brace after the surgery.

I found the forum and was hopeful that one of you that has been through this experience could share some of the things you did to keep your baby comfortable during this time. He was just beginning to walk & now is pretty much immobile. He's still taking some pain medication, but the doctors say his pain should diminish in another week and that when he feels better will start to try to get around. We are hopeful that this will fix his problem and he won't have to have other surgeries. We know it could be a lot worse.

My daughter doesn't have access to the internet so I will have to correspond for her. It will be greatly appreciated anyone that can help. He's fussy, will not sleep much at night. He will play some and watch Baby Einstein videos, but is taking constant attention.
Thank you,
Lisa Wilson