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[Allison'sMom]

Last week I looked at my 11yo DD and thought something didn't look right. I had her stand up with her back to me, and I could see a "hump." We had x-rays done, and the report says "Pronounced thoracic curvature with compensatory lumbar levocurvature. Thoracic and lumbar spine Cobb angles are 74 and 54 degrees respectively. There is a rotatory component. No spondylolisthesis identified." We have appointments next week at Children's Mercy in Kansas City, and at KU Med to see what the orthopedic specialists have to say. I've already read most of "Scoliosis: Ascending the Curve", and I'm trying to learn as much as I can before the appointments.

My questions to you--what can we expect as these initial appointments? Is there anything I can do to prepare my daughter for this? Is there anything else I can do to make sure I'm ready?

Thanks for your advice.

Amy

[Carmell]

Hi Amy,

Take a few deep breaths. This is a lot of information to absorb all at once. Scoliosis is rarely an emergency, so you have time to research and find the right "plan" for your daughter. Before you do too much research or get too caught up in numbers, you need to meet with a PEDIATRIC orthopedic surgeon. Write down a list of questions that are specific to your daughter. Does she have any other medical issue that may influence treatment for scoliosis? Has she had a spine MRI to rule out any underlying cause for the scoliosis?

Good luck and keep us posted.

[Michael Barga]

My heart feels for you.My son is 21 and a few months ago I thought hey something is not right, you better get that shoulder looked at. Scoliosis...65 degree upper and 39 lower curve by our Dr.Another Dr said 75 and he did not measure the bottom curve.I felt so guilty... how did we not notice....when and how and of course why??? There is a lot of information here on the forums and lots of good people.Being 21 my son has to make his own decisions but I try to pass on as much information that he can absorb..Just wanted you know other curves were discovered around the same size....and it is not uncommon from what some other Mothers wrote me. I would second the idea of writing questions down.. it is so easy to forget. Another adult to listen is good too.... it is a lot to absorb.I have heard of people that takes a small recorder with them so they can replay what was said too.I will be thinking of you and keeping your family in our prayers.

[Allison'sMom]

New to this

Thanks for your advice. And yes, I'll keep you posted.

[rainbow2010]

Parents should never feel guilty about ther child's scoliosis. My daughter went from slight curve to 45 degrees in less than a month. There is usually no definitive reason for the onset of scoliosis. Because I am a scoliosis patient, I watched both of my daughters carefully to try to catch it early. My younger daughter had been examined, and in less than a month, her curve was visible. I had both of my children monitored by an ortho and the younger one still needed surgery.

[Allison'sMom]

Thanks, rainbow. There's a part of me that wants to feel guilty, but mostly I just feel ignorant. I was told years ago that my older daughter had a slight curvature, but it was not in the range that would be treated. I had no idea she should have been followed throughout adolescence. She's 18 now. I also didn't know that scoliosis is hereditary, or I would have been watching my other kids. My older daughter has made an appt for a check-up, and she plans to ask the doctor to check her back. So....not so much guilty as ignorant!

[Michael Barga]

I am surprised how many people say what is Scoliosis? I know I was ignorant about it a few months ago.I remember our Dr checking when the boys were little and saying WELL they are growing straight...I really did not know it was something they should be checked for all the remaining years and I thought he was just remarking on how tall my sons were.I have been telling friends and family please check or get your children checked now.I think I like the word ignorant instead of guilt. I need to use it the next time a few family members are asking why I did not see it. Thanks to all that write how fast a curve can show up or increase.

[dkopp]

Allison's Mom -

My daughter had surgery at Children's Mercy 'Hospital in January with Dr. Sinclair - we were very pleased with him and the hospital. Dr. Price is in the same group and is also supposed to be good. I have also heard good things about some of the doctors at KU Med but I liked the idea of going to a children's hospital instead (even though, at 14, she felt a little old for the hospital!).

I would be sure to ask the doctors what they feel her different options are based on the size of her curve and how much growth she has left (which will probably be alot at age 11). My daughter's curve was already at 44 deg. when she was diagnosed in Jan '05 and we tried bracing first even though bracing at that degree of a curve is kind of borderline whether it will be effective. By July '05, it had progressed to 56 deg. even with the brace so our decision then was surgery. Let me know if you have any questions about Children's Mercy or anything else!

[Allison'sMom]

dkopp--

Thanks for the information. I actually don't know which doctor we'll be seeing at CMH. They told me Drs. Price and Schwend were at South, which is close to my home. When they heard the radiology report, they said we'd have to come downtown in order to get in ASAP. I think we're probably going to see Dr. Sinclair.

I think if it comes to surgery, if we have it done locally, we'll go to CMH. As you say, KU is not a children's hospital. We're going there this week to get more opinions and more information. Everything I've read so far says get AT LEAST two opinions, and preferably more.

There's a doctor in St. Louis who's supposed to be on the leading edge of scoliosis treatment. He practices both at Shriner's and at Barnes-Jewish (I think I spelled Barnes right). So we're hoping to see him for a third opinion if we can.

I honestly don't think anyone will suggest bracing Allison. She's only eleven, but she's been having periods for about six months now. And her curves are already 74 and 54. I'm pretty much preparing myself for surgery. But Allison is already trying to figure out how to go swimming and play soccer if she has a brace on!

Thanks again, and I'll be happy to hear any thoughts you might have, as well as how your daughter has done since her surgery.

Amy

[dkopp]

Allison's Mom -

Are you talking about Dr. Lenke from St. Louis? I have read quite a bit about him also. Yes, I do think he practices at Shriners which would be a good place for another opinion. Shriners is totally free of charge for any child they accept under 18 years old and you don't need a referral from a doctor to apply. It is probably very good that your daughter has started her period as she is may be close to being done growing. We actually did not get another opinion because everything I read (that I could trust) said surgery is the best option past 50 deg. and I had alot of trust in Dr. Sinclair. He will spend as much time as you want, discussing options and answering questions. He is also very good about talking to the patient, not just the parent. He spent over an hour with us during her pre-op appointment.

My daughter is doing very well since her surgery. The first 2 weeks are the toughest but it gets better after that. She was out of school for 5 1/2 weeks and went back full time but got the benefit of some of our snow days this winter and only went 2 days her first week which helped! Her 3 month check up is this Friday so we are anxious to see her first x-rays and see if any of her restrictions are eased. Dr. Sinclair tends to be fairly conservative (which I appreciate) and he hasn't even taken any x-rays yet because he says it takes about 3 months for the spine to "settle in" and give us the best picture of how well the surgery went.

Keep us posted on how her other appointments go! It must be especially tough to be thinking surgery right off the bat but it will get easier.

[Allison'sMom]

dkopp-

We went to CMH today, and saw Dr. Schwend. I really liked his style, and everything he said made sense. He says Allison should have surgery within the next 4-6 months. Since her curve is so pronounced at such an early age, he feels that waiting is not a good choice. He also said that because there is not a strong family history (he looked at my older daughter, and confirmed that she has a very slight curve), he wants to do an MRI just to make sure that there is no underlying cause for her scoliosis.

I don't think we'll be going to St. Louis. Dr. Schwend just finished a sabbatical at Shriner's, and apparently Dr. Lenke is a friend of his. I suspect their opinions would be pretty much the same.

We get another opinion tomorrow at KU Med. I'll let you know what they say.

Amy

[rainbow2010]

Children's hospitals are much better than regular hospitals. We stayed right in the room with our daughter. They had a couch that pulled out into a bed for us. The nurses also check on the kids more than in a regular hospital. Our daughter was 14 when she had her surgery and there was a 16 year old in the next room. Don't let the "Children" part of the hospital make you think it is only for under 12. They also explain things in terms that the kids unerstand.

[dkopp]

Amy -

Glad to hear you liked Dr. Schwend - I agree, it means alot when you meet a surgeon you feel comfortable with. I think there are several good surgeons in that practice. That's too bad you have to look at surgery already but I think you are in good hands with CMH. Yes, you can stay in her room while she is there, there is a twin bed in each room. When she is in intensive care, you can stay at the Ronald McDonald room just down the hall from ICU. Since your daughter is only 11, she probably has quite a bit of growing left and has a much higher chance of the curve progressing. And I have read that most of the younger ones, like your daughter, frequently have MRI's to make sure there isn't an underlying cause for the scoliosis.

My daughter had her 3 month check up today and is doing great. She can now lift up to 10 pounds and swim and ride her bike. She was told she can't ride roller coasters until next summer which bummed her out! Her main thoracic curve to the right is down to about 15 deg - he said he could have probably straightened it completely out but she had a smaller upper thoracic curve to the left that he didn't want to fuse so the 2 curves now balance each other out. (She was fused from T4 to L2)

Let us know how you appointment at KU Med goes!

Donna