just found out my 9 year old son has congential scoliosis

[Jordanmom]

Has anyone had a similar experience with their child? I am having a difficult time understanding how I could have overlooked this scoliosis since he was born with it. He has congenital upper cervical scoliosis and upper thoracic curve. I just realized something was wrong when the curve of his neck started to get strange last year at age 8. Doctors are saying bracing will not work. I just need to watch it to see if it gets to intervention level?? Is there something else I should be doing than just waiting? He is starting to look very deformed in his neck. He cannot turn his neck left due to a kind of congenital fusion in the cervical spine at C5 and C6. We did have MRI’s done last summer and spinal cord was o.k. but there are vertebral wedging at T1 and T4. He also has a leg length difference of 2cm. I am starting to think he has klipel-Trenaunay syndrome from the web search I have done. The doctors keep saying this is very rare and I have not found much on cervical scoliosis searching the web. If anyone has a similar experience I would very much appreciate the thoughts as I am extremely worried about him. Thank you.

[Resilience]

Welcome. I am sorry to hear about your son but glad you found this site. You'll get a lot of support here.

I don't know much about the congenital form of scoli but I'd recommend that you see a pediatric scoliosis specialist if you are not already. Not a general orthopedist. Consider getting a second or third opinion. A great doctor will welcome a second opinion. We live in Southern CA and see Dr Peter Newton who is wonderful and we'll be seeing Dr. Betz and his team in Philadelphia for a consult in a few months. Via email and mail contact with the Physician Assistant at Shriners in PA, Janet, she was glad to review my daughter's records long distance.

Also, just my gut reaction, 2 cm leg length discrepancy seems like a significant difference that it deserves to be addressed too. Worth following up on that as well.

Best Wishes. You are not alone!

[mariaf]

I don't know much about the congenital form of scoli but I'd recommend that you see a pediatric scoliosis specialist if you are not already. Not a general orthopedist. Consider getting a second or third opinion. A great doctor will welcome a second opinion. We live in Southern CA and see Dr Peter Newton who is wonderful and we'll be seeing Dr. Betz and his team in Philadelphia for a consult in a few months. Via email and mail contact with the Physician Assistant at Shriners in PA, Janet, she was glad to review my daughter's records long distance.

I could not agree more that it is critical to see a pediatric scoliosis specialist. In fact, I'll go one step further and say that you want to see someone who deals with all sorts of scoliosis cases (congenital, juvenile, scoliosis in conjunction with other medical issues, etc.). The team at Shriners, Philadelphia would fit this bill for sure. In any event, I would try to get a few opinions as suggested above from the appropriate specialists. As also mentioned above, if you contact Janet at Shriners (see my signature for her contact info) she will often have the team of doctors review cases 'long distance' if you send them all the files, x-rays, etc.

Best of luck and please let us know if you have any other questions - we are here to help and have all, in one way or another, been where you are standing right now.

[titaniumed]

Welcome

Cervicothoracic scoliosis curves are not common and will add a few more options for you.

We don’t know your location. I guess it doesn’t matter when you need the very best.

I would take your son to UCSF or HSS in NY. These are the best places for a condition of this manner because they have teams of the best people, experts in all fields can be summoned.
They also work with shapes that are not the norm.
http://www.ucsfhealth.org/conditions/spine/
http://en.wikipedia.org/wiki/UCSF_Medical_Center
http://en.wikipedia.org/wiki/Hospita...pecial_Surgery

Please don’t beat yourself up about this, its not your fault ok? Scoliosis happens, and hides well and can progress very quickly.....

I knew a girl 29 years ago with this condition but moved away from the area and lost touch with her.

Please keep us posted on him...
Ed

[Jordanmom]

Thank you all for responding. My location is in connecticut so I have been going to Yale hospital in New Haven but they have not been giving me all the information ( I still do not know the curve degree but it is looking severe to me) I feel that they have really not done a thorough job here...I have started seeing them since August 2009 for "swollen side of neck" and here we are in 2011 and I don't know the degree! I didn't ask questions because I did not know that it was anything concerning. I really feel that seeing so many residents there does not help with consistency of information. I really would like to see one person that will remember my son and be interested in giving me accurate information! Looking back the pediatrician was pretty clueless too because someone in a medical field could of easily identified this..but she sent me to do an ultrasound back then?! It all started looking bad to me when I had his shoe built up in October and it was a 1 inch difference and it looked so big on the shoe! Prior to this Yale just gave me a tiny shoe insert (1/4 ") so I figured the difference was small. Anyway..I have made an appointment with Shriners in Springfield, MA (March) hoping that they are more specialized in this and can give me more answers. Thank you very much for the suggestion for HSS in N.Y. and Shriners in Philadelphia. I am going to be making a list and getting to these places for 2nd opinions.

[mariaf]

Anyway..I have made an appointment with Shriners in Springfield, MA (March) hoping that they are more specialized in this and can give me more answers. Thank you very much for the suggestion for HSS in N.Y. and Shriners in Philadelphia. I am going to be making a list and getting to these places for 2nd opinions.

We live in NYC. And while I know HSS has an excellent reputation, we chose Shriners in Philly simply because we felt they saw many more juvenile cases. In fact, my son was originally seeing a doctor who had offices at both HSS and in Uniondale, LI. She was listed on HSS's website as a pediatric orthopedic surgeon and yet her office was full of mostly teenage and pre-teen patients. I rarely saw anyone under 10 in the waiting room. Perhaps for that very reason, the treatment methods offered were limited since at that age (teens), it is usually bracing or fusion.

Again, I'm not questioning the excellence of HSS for orthopedics, but for me, I was more comfortable with a team of doctors who saw a lot of younger kids.

[Resilience]

Just a few thoughts for you Jordanmom,

I can hear your frustration for not knowing your son's #s. You'll probably see the measurements in black and white if you request the records from Yale or wherever he's had his X Rays done. It will be helpful to have copies of his previous X Rays and the Radiologist's reports along with the Physician's progress notes with you when you go for Second / Third opinions. You'll have to sign for the records and may have to pay a small fee but it's worth it. Start your own file.

Re the ultrasound, that was the first test I actually had done many many years ago: an ultrasound of my kidney! for the muscular protrusion in my lower back. I think many people on this site have had a bumpy road initially until they found the right group of specialists for their child. In my daughter's case the first Scoliosis specialist I took her to see recommended watching and waiting and rechecking her in 6 months. Then I researched the topic personally, once I stopped crying all night, and realized that's not the standard for a child her age with her degree of curves, although it would fit the standard for a teen with her degree of curves. Now we are with a Scoli specialist who specializes in children and are actually taking the leap for a cross country trip for an eval in Philadelphia over spring break. We don't know what lies ahead for my daughter but my husband and I do know that we want to look back on this 10 years from now and know that we did the best we could at the time. From where you stand now all of the unknowns are stressful. You'll probably feel better once you find the right specialists for you and have a plan in place.

Best Wishes!

[TitaniumGrrrl]

I can't give you opinions on what's afflicting your son, but I can tell you that Dr. Betz is one of the best in the business. He did my surgery, & at the time of my surgery, I was one of the best corrections he had ever achieved. And Shriners is an amazing hospital (I would know, I logged a LOT of quality hours there.). Good luck to your son, & keep us posted.

[Jordanmom]

thanks to everyone for your input. I took my son to Shrinners in Springfield Mass. last week and here is what they said: My son has a very RARE type of problem. They do not see this often if ever there...His curve is about 35 degrees in the cervical area (neck). The doctor guessed at the curve looking at x-ray. I did not see him calculate it by any technical process. The thoracic curve is mild at about 10 degrees. He has a 2cm leg difference for which we will start to take x-rays every four months to determine at what point he may need surgery to correct that. The most concerning thing is that there is very little that can be done in the neck area because surgery there is very dangerous and could leave him with even less range of motion in his neck. As it is he cannot turn much to the left because his bones are fused there from birth. If surgery was done they would have to fuse more bones to stop neck from tilting to the right and would leave him with very little mobility in his neck...so....I am supposed to wait and go back in four months. Easy for them to say " just wait" all I do is "just worry" every time I look at my child. I am not sure what I will do next. Most likely I will get more opinions in the months ahead and pray that everything does not tilt more.

[Pooka1]

You probably got a very good opinion but it might be good to get other opinions when you have such an unusual case. Were it me I would ask your surgeon if he consulted with Betz. Also, you might want to see some of the guys who work with unusual cases who don't necessarily focus on scoliosis but may have as much for more experience with unusual cases associated with unusual conditions.

Given how rare your son's condition is, I think these surgeons should consult amongst themselves on the case. I actually think they do on some of these cases whether or not they tell you about it. But you can ask. If it is that rare then you need to know about EVERY case out there which means you have to find the surgeons. I would ask the surgeon how to do this.

Good luck.

[titaniumed]

Here is another Doctor who is beyond genius. I think it would be worth a trip, for his opinion, at least have him take a look....

Go through his site, it goes deep.

http://www.pediatric-orthopedics.com...nuzzo__md.html

Ed

[Pooka1]

Hey Ti Ed, that guy sounds like a winner.

Here's his scoliosis page which has much to discuss should anyone care to do so.

http://www.pediatric-orthopedics.com...scoliosis.html

[Pooka1]

There is so much on Nuzzo's web page! He seems to really be the guy for unusual cases requiring out of the box thinking.

Back on the scoliosis web page, he claims that bracing failures are concentrated in warm regions. I'd like to see the data supporting that. The claim rests on warmth being a larger (and separable!) factor than general difficulty wearing a brace. Again, I'd like to see the data. I suggest it's hand waving unless there is data.

I think it's safe to say this guy is in the "bracing works" camp. I'm going to see if he is participating in BrAIST. I expect not given his stated opinions.

So much to discuss... I may start a new thread.

[mariaf]

I agree with those who have suggested a consult with Dr. Betz. In the 7+ years that my son has been under his care I can't tell you how many parents I have met who said that nobody knew what to do with their child's particular condition until they met with him.

Best of luck!

[malka22]

I agree with Mariaf. In fact, a consultation with Dr. Betz is a must, IMO!

Call Shriners 1-800-281-4050 begin_of_the_skype_highlighting**************1-800-281-4050******end_of_the_skype_highlighting or email Janet Cerrone (janetcerrone@comcast.net)