Scoliosis In My 7 Year Old Progressing

My son was diagnosed with Scoliosis at age 5, a 35 degree curve, 3 curves 2 slight ones at neck and lower back, and a sharp curve at middle of back near heart and lungs causing disfigured ribs. He was then diagnosed with NF 1 a year after that. Now its been 2 years and the middle curve in his spine is progressing 3% a year the other 2 curves are stable. He wears a Milwaukee Brace 23 hours a day and we take him to a chiropractor to help build muscle strength 3 times a week. We went for orthopedic app today and they said at our next app they will be talking surgery options he is only 7 years old, can anyone give me advice insight encouragement, anything. We don't want to operate.

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Hello,

My daughter was 4 years old when a curve of 15% was detected.She wore the same brace for years,but the curve continued to increase.By grade 7 she would no longer wear it to school.We were approached about surgery when she was 11 or 12 as the curve was now 45%.I was asking for advice everywere.I was told by 2 people not to do the surgery before she stops growing,as they had both done it before and it caused their trunk to look a bit stunted(short).Most of all,my daughter did not want it either.We did physio,chiro,yoga you name it,but with NF,scoliosis is very hard to stop,sometimes even with braceing.By the time she was 16 she had a 70%curve and she did not like how the rib stuck out in front.I must tell you that the doctors told us that even at 70% there was no medical reason to do the surgery,it was just for the look of it,becasue it was not interfering with the lungs or heart.So I was glad for their honest advice.Anyway,she decided to do the surgery at 17 and it went well and she looks great and she is happy.I would suggest that you hold off and give the bracing a chance.Don't do it unless it is interfering with his health.Alot of doctors just love to push surgery when it is not necessary.Luckly for us,our doctors were not like that.As long as he has no pain or any issues from the curve,then leave it alone,he is still so young.If you need anymore info,feel free to contact me.
Ari01

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I would hold off as long as possible for surgery due to the fact that if he has rods now he will have to have surgery to put in larger rods every time he has a growth spurt. I had rods put in on June 21, I was 18. I had two curves, one on top and one on bottom. I only had rods put in on top because the lower curve was caused by the top and the bottom self corrected. My top curve was 51 degrees. If you have any questions feel free to ask.

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Each time spinal xray is measured for scoliosis there is a +/- 5 degree discrepancy. So the progression might not be as much as you think (though it could be more).

A 35 degree curve at 5 yrs old is a pretty big curve, so it's right for you to be extra cautious.

Are you taking your son to a scoliosis specialist or just a general orthopedist? It's important that the surgeon is really aware of scoliosis. Some scoliosis in NF run a different course from typical idopathic juvinile scoliosis and a general ortho might not know that. Even a scoliosis specialist won't see that many NF patients with the non idopathic kind.

As others have said, because he's so young, I'd approach the option of surgical fusion as the last option. He's got lots of growing left and the levels that are fused will stop growing.

Go to www.scoliosis.org and ask in the children's section of their forum. You will be able to find parents there in similar situation.

I have 57 degree curve that's been progressing at the rate of about 1 - 2 degrees over the last five years. (We only confirmed the small degree changes are real because I've been tracked by the same scoliosis specialist for that long) and will eventually need surgery. I'm trying to hold off as long as possible. I had about a 45 degree curve when I finished growing, which isn't bad, but I'm in the small group of adults that continue to progress after skeletal maturity.

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I have a orthopedic doctor from Shriners Hospital. I have also seen Dr Benjamin Roye out of Colombia Presb Hospital in NYC I live just north of NYC. I think I am going to follow up with Dr Ben Roye again, its been about a year since Nathaniel has seen him. I go to Shriners because my insurance wont cover the brace. The doctor there said he knew Ben Roye and said he is the best in country. Both of these doctors are scoliosis pediatric specialist. Does it matter how severe the curve is if it doesn't effect his organs, or cause any pain? I know they are going to talk about growing rods, and internal bracing technique which I am not sure if he is a good candidate for either. I just want to find an alternative method besides surgery. Does anyone know if chiropractor work works well, he has been going since June, and his top curve straightened a bit. Its funny the chiropractor gives me exercises to do but the orthopedics dont. hmmmm

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If there is no health risks associated with his curve,then hold off.Chiropractors will try to help,that's why you need to give other methods a chance.Orthopedics are surgeons,their way of fixing things is by cutting.They will not suggest excercise or any other method.I have been through all that.Yes in the end my daughter had to do it,but the wait was worth it.Now it's done and no more surgery.I don't know much about these growing rods,but when you do it too young,9 time out of 10 they have to do the surgery again,usually to lengthen the rods,and believe me..that back surgery is huge.My daughter was in surgery for 9 hours.Hold off.

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In my personal/other scoli. patients and professional opinions, chiropractors do not help. They may do no harm other than taking your money, but in general their 'treatment' has no effect other than pain relief. (Pain relief is one thing that chiros have been proven to provide well)

What the docs. are worried is about is probably the curve continuing to progress in to a bigger degree as he grows, and they want to prevent that. A curve can reach a point where surgery wont' help and/or will be too difficult. But he's no where near that, I'm talking 100+ degrees.

Like ari said, I'd hold off. See additional docs if you feel you want to be more comfortable with waiting. I've heard of growth rods working well, but it may not with NF -- no one really knows for sure.

Was the strightening of his top curve confirmed by his ortho? It should really be one doc measuring ALL the xrays (in addition to 2nd opinion doc). That way, there is least amount of measuring discrepancy so you get the most accurate degree numbers.

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The one doc we se is in Philadelphia a Shriners, she confirmed the top curve was slightly better. His top and bottom curves are very slight, and she said that was good that they were not moving too. I do notice the chiropractor care helps him stand better and he has more control. he used to always stand with his head tilted and shoulder down, and looked like a flopsy doll when he would run around, when out of the brace now he holds himself straight and has more muscle tone which I do attribute to chiropractor. He is not taking any $ and seeing my son 3 times a week, he has a special place in his heart for my son. So I know I am not being ripped off.

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I'm glad to hear that the chiropractor is helpful. I've seen too many cases including my own that lost a chance at non-surgical treatment due to money hungry chiropractors.

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http://www.nehealth.com/Medical_Care/Sunnyview_Rehabilitation_Hospital/
sunnyview is great i went there for mine when i was a kid. 1270 Belmont Avenue
Schenectady, NY 12308
(518) 382-4500

if it is not the number they will give you the right one
pm me if you have any questions.
i used to live in beacon and went there once to twice a month when i was younger. it is a good place. staff has the most respect from the cleaners up to the top doctors for people.
i now live in ft plain about 45 min from there lol.

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Hi there!
First I'm sending you a big hug! Our daughter
Maddy was diagnosed with scoliosis due to Nf1 at age 3! Her curve progressed to 80 degrees quickly. We chose to have growth rods inserted and every six months she would have a surgery to extend the rods, this allowed her torso to continue growing. She also wore a brace 18 hours a day.At age 8 the growth rods were no longer functional and she had a spinal fusion, a total of 14 surgeries and alot of emotional stress. Our local Children`s hospital (Children`s Hospital of Eatern Ontario ,aka CHEO) featured her story on tv for their yearly telethon .But I am here to tell you there is `light at the end of the tunnel`` Maddy is doing great , her recovery time for the fusion was 4 weeks, limited activity for 1 year and now she is a tall and extremely healthy and active ten year old and no longer wears a brace ! You can view her story about her sugeries and journey on youtube.com put ``Maddy`s story and CHEO`in the search area. I hope it brings you some comfort and hope! I`m here for you should you have any questions or just need to vent :-)

Sincerely,
Tara in Ottawa, Canada

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