Newly diagnosed 14 year old

[DEBR]

My daughter will be 15 in December, she was just diagnosed with a 48 degree curve. I have been to a chiropractor and a surgeon. The chiropractor can't wait to start treating her (at $65.00) a session. The surgeon said lets wait and see if her curve progresses, if it progresses 5 degrees we will talk about surgery (we are waiting 6 months) He feels it is too late for any brace.

She has little or no pain, but has been very active with swim team all summer and it has just started up again, she is little 5'4 1/2 and only weighs 98 lbs. Her biggest complaint is that her figure is uneven. She has an hour glass figure on one side and straight on the other, I think with every degree it gets more and more obvious. She is also starting to show a slight bulge on one side where the muscles protrude on her back.

The question is, if it progresses 5 degrees won't that start to hurt her organs and breathing, I don't want to wait until this progresses to the point where she needs surgery and I have to wait because of insurance issues. I'm really at a loss and frightened. Any advice anyone can give? Maybe even, if you had to do it over, what would you have done differently? I am in the Atlanta Area any doctor that you might recommend?

Thank you, I'm so glad I found you all

[Elisa]

Hi, glad you found us too! You will find a lot of information and support here and that will help you with your decisions. My son was diagnosed with scoliosis about a 1.5 years ago and his curve was already at 48* like your daughter and he too had the uneven shoulders and the right side of his back began to bulge. He was immediately referred to a spine specialist but unfortunately the wait was so long that we ended up contacting Shriners to see if he could get in sooner to see a specialist and he did. Unfortunately his curve had progressed to severe by then and surgery was the only option. I was shocked to see just how quickly his curve progressed and he still had so much growing to do so it was only going to get worse. Your daughter's curve might never progress to the point of needing surgery but it is good that you are really keeping a close eye on things. I'd also contact a Shriners hospital in your area and try to get in to see someone there as they are very good with kids and know a lot about scoliosis.

[DEBR]

Thanks Elisa,

How long was it from the 48 degree diagnose and when you made it to Shriners? That is my fear, the time lapse! 6 months seems like a long time. Clare is still growing I just don't want it to get that bad. Did you son have a lot of pain? The doctor even thinks its too late for a brace. We have Children's hospital here in Atlanta, so that's our next stop.

Thanks

Deb

[Elisa]

I can't remember all the details about the time frame when he was first diagnosed at 48* to when he was finally seen by a scoliosis specialist at Shriners where he was measured at 110* but it progressed extremely fast, like a train wreck. Just crazy and scary fast. It was like one day he gets the diagnosis and then within less than a year he's at 110*. The last three months before we headed down to Portland OR it was like his back was getting worse every day and he was in quite a lot of pain from being so twisted and he had muscle spasms and it hurt a lot when he sneezed or coughed. I did take him to a chiropractor and he was shocked to see the state of his spine and told me that he I should be a "squeaky wheel" and keep on calling BC Children's Hospital but by then I had already joined this forum and took their advice to call Shriners and we went that route instead. There are people here who do not recommend chiropractors at all for kids with scoliosis and actually the chiro that I went to had to consult with the others at his office to see if he should even be working on my son and they agreed that a very gentle approach would be okay. In hindsight I don't really think I'd do that again but it did seem to ease his pain for a bit and he did enjoy the sessions. I should add though that our medical here covers ten chiro visits a year at only $7 a session and a $35 initial consultation fee so it was very reasonable. $65 would have been a bit much for me to pay though.

[Elisa]

I should also add that along with a severe curve, my son also had significant rotation which really made his ribs bulge on his right side. I think that freaked me out more than the actual lateral curve and even after his two surgeries and traction he still has a definite rib bump but it is a LOT smaller than it was and given the severity of his scoliosis the surgeon did a great job. As he puts on more weight and adds some muscle as he grows he will look more filled out on the left side apparently, but mostly he is not in pain anymore and that's what really matters to us. I hope you keep us posted about how things are going with you and your daughter and feel free to ask away.

[Doreen1]

Thanks Elisa,

We have Children's hospital here in Atlanta, so that's our next stop.

Thanks

Deb

Hi Deb,

I live in Woodstock, GA and while I do not have a child with scoliosis, you've come to the right place for advice/insight. Elisa's son had an amazing journey and everything happened so fast for her after she joined this group. Take some time to read her story.

Warmly,
Doreen

[LokanasDad]

Deb,

My son had surgery at Shriner's in Greenville SC this past summer. Believe me, there is no better place than Shriner's and they have hearts of Gold. We have a children's hospital here in Jacksonville, but they are nowhere near as good as Shriner's was, IMHO. Our doctors told us with our son, also 15, that the brace would do nothing for him but make him miserable. They would not consider it for a child over 40 degree curvature. Has your daughter had a curve for a while, or has it rapidly progressed. I would imagine that like our son, she has hidden the progression, he told us after the surgery that he knew for a long while it was getting worse, but made it a point to never have his shirt off around us or wear a tight shirt because he was afraid that he would have to have surgery or a brace. At a measurement of 48 degrees, I would definitely recommend a second opinion, the way the measuring is done, there is a little play in that number. If your daughter is still growing, and she is over 45 degrees, then she would be a candidate for surgery with shriners. It is also possible, and without having an MRI you will not know if this is the case, that the scoliosis is neurological. If it progressed rapidly, that is a possibility.

Definitely get the second opinion. And Good luck to you and your daughter.

[Pooka1]

It is also possible, and without having an MRI you will not know if this is the case, that the scoliosis is neurological. If it progressed rapidly, that is a possibility.

Fast-moving curves are also associated with connective tissue disorders including Marfans. I have identical twins with scoliosis. The one daughter's curve never moved slower than 5* a month and the other daughter's curve started and stopped but got up to 3* - 4* a month in one interval. They do not now fit the diagnostic criteria for Marfans but we can't rule out emergent Marfans where folks eventually fit the criteria.

If your daughter's curve has moved quickly, I would definitely ask about a referral to a medical geneticist to rule out connective tissue disorders.