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lauralee76
01-02-2007, 03:09 PM
My 6 year old son Anthony was just diagnosed with scoliosis. Maybe some of you can help me understand what was told to me. The nurse gave me the following information.

T5 to T12: 21.3 degrees dextroscoliosis

T12 to L4: 14.2 degrees levoscoliosis

If I understand correctly, it is only one curve going out then going in, correct? Having both numbers, I am a little confused as I hear everyone taking about one number. Would this be the 21.3 degrees? Or does it appear that my son has two curves? The doctor was gone for the day and had his nurse call me, she did not seem to have any understanding of the numbers.

Anthony now has an appointment set up for Jan 16th at the Milwaukee Children's hospital. He will be having an MRI and we will be visiting a orthopedic specialist. I can't believe I have to wait over two weeks to find out anything more. Now I have to call the radiology department at the Children's Hospital here (does not have an orthopedic dept) and get a set of his x-rays to bring along.

Thanks for any light you can shed! :)

Laura

SandyC
01-02-2007, 03:18 PM
It means that your son has a backwards shaped "S" curve. The T5-T12 means it is at the Thoraic or chest level. The T12-L4 means is that the second curve is at the lower thoraic level to upper lumbar or upper part of the lower back (waist level and below).

Carmell
01-02-2007, 04:06 PM
Hi Laura,

Like Sandy said, your son appears to have two curves - an "S" shape in his back. Don't get too stuck on numbers. There is a margin of error +/-5 degrees even when the same person measures the curves. I would start a list of questions that are specific to Andrew for a PEDIATRIC orthopedic surgeon. The ortho will be able to give you more information that is relevant to his condition.

I'm glad they are doing an MRI. Scoliosis in young children is not common, and typically has an underlying cause. I would suggest/recommend that you contact a PEDIATRIC neurosurgeon and request that they read the actual MRI scan, not just the radiologist's report.

Take a few deep breaths. This is not an emergency situation. Waiting is the hardest, I know. You'll do fine. He'll do fine. Once you have the MRI done and the appt with the ortho, you'll be able to re-group and help determine a game plan, if needed. Good luck and keep us posted.

lauralee76
01-10-2007, 12:10 PM
Thanks for the responses. I found out that Anthony will not be getting an MRI. Must have been some miscommunication. Also I might be canceling my appointment at the Children's hospital. I just found out about Shriner's (these boards are great!) and I think we are going to go that route.

mariaf
01-10-2007, 01:32 PM
Lauralee,

Shriners Hospitals are excellent. I agree, though, with Carmell and the others that an MRI is a good idea for a child diagnosed at such a young age. I wouldn't be too surprised if they suggest one at Shriners. I believe it's best to rule out any other causes of the scoliosis. Sometimes finding a cause makes it easier to treat.

Best of luck,

amandap
01-10-2007, 02:39 PM
I couldn't agree more with what everyone else has said.

You definately want Anthony to get an MRI, better safe than sorry.

And going the Shriners route is very smart but don't feel obligated to cancel your appointment its always good to get 2 or 3 opinions.

My daughter goes to Shriners in Philly, we love everyone there they are all terrific.

Amanda

lauralee76
01-10-2007, 05:03 PM
Thanks for all the response - you guys are great!

The MRI thing was really confusing. My son had his x-rays on a Thursday. We got the results back Friday afternoon, after his pediatrician had left for the day. A nurse called to let us know that she had showed the x-rays to another pediatrician at the clinic and had prescribed a meeting with an orthopedic specialist (surgeon?) at the children's hospital and an MRI. I called the Children's hospital and told them I needed to set up an appointment and schedule an MRI. I got an appointment and was under the impression an MRI was scheduled for that day also. Then I started researching MRI's for kids and I called them back to find out what I could expect that day. They told me an MRI was not scheduled, and that they usually don't do MRI's because of the expense. So I called the pediatrician's office back and now they are saying the same thing (i.e. expense). I don't know what to think. :confused:

I was thinking about keeping the Children's Hospital appointment, but our insurance makes us pay the first $500 no matter what, so I would rather not go that route if Shriner's is they way we want to go.

Thanks!

christine2
01-10-2007, 07:39 PM
Hi lauralee
I have been going thru the decision about an MRI too. I did some research and was sent some research papers by people on this forum and decided to have it done. My daughter has a right curve which is less likley to be associated with other issues then a left curve, although there are some cases documented of underlying problems. My daughter is 6 yrs old (very young) So we are going to have it done. It does sound like shriners is a great option.
Christine

christine2
01-10-2007, 08:13 PM
Lauralee

There is a good article posted by Celia on page 90 of spinecor thread dated 1/5/07

Christine

amandap
01-11-2007, 08:49 AM
Good Morning Lauralee,

You deftinately want to get your son seen by the pediatric orthopedic first, he will determine exactly what needs to be done.

If you do decide to go the Shriners route (which is a great idea), the first thing they will ask is for an MRI, if it has already been done be sure and take the films with you, if it hasn't they will order one but it won't be done there at Shriners. They will have you take your son to your local radiology facility. We already had Lorena's done when we had our initial appointment (huge time saver). But they did want a CT scan with contrast done before they decided if they could do the procedure on both or just one of her curves and we had to do that back home at our expense. So unfortunately you'll still get stuck with the $500 deductible, but families can apply for their assistance program by talking to a social worker.

Everything done at Shriners~Dr visits, x-rays, surgery is covered at no expense to you but anything done outside Shriners is at your own expense including travel/hotel expenses but families can apply for assistance with thise as well.

The most important thing at this point is to schedule an appointment with the pediatric orthopedist.

Just a little more info, hope it helps.

Amanda

lauralee76
01-11-2007, 10:13 AM
Amanda-

Thanks for the info - it is such a confusing time for me.

I believe the appointment I have scheduled at the Children's Hospital in Milwaukee is with a pediatric orthopedist (I don't know all the titles and terminology). Does Shriner's have a pediatric orthopedist? I would like to only go to one hospital, not both - but I will if needed. I do not know if there are any pediatric orthopedists close to home, my son's pediatrician wanted the appointment schedule at the Children's Hospital. I did not question it because I did not know my options.

Laura

christine2
01-11-2007, 10:45 AM
Laura
It is very confusing!! You are doing what you need to by getting as much info as possible. I actually have a little notebook that I put everything in from Drs names to phone numbers, questions. This way I do not forget anything especially when we see doctors. At doctors appointment we try to take everything in and before you know it your sitting in your car driving home and relize you forgot to ask all your questions. Trying to get a doctor on the phone is difficult.

My daughter is also 6 yrs old. We have her in a spinecor brace. I think the Shriners close to me may use the brace. It may be worth while for you to take a look at it.

Trust me it does quiet done a little once you get your bearings straight!
Christine

lauralee76
01-11-2007, 11:17 AM
Christine-

I have been looking into the SpineCor brace. After a few days of reading, I am up to page 72 of the SpineCor thread. :D

I am 99% sure we will be going with the SpineCor brace - if he needs a brace. If we cannot get the brace at the Chicago Shriner's, we are willing to travel to the Erie Shriner's where I heard it is used.

What kind and size of curve does your daughter have? How is SpineCor working for you?

Laura

christine2
01-11-2007, 11:48 AM
Laura

I think there is someone here that goes to erie shriners for spinecor???

My daughter is 6yrs old she has a 33 degree curve or should I say had. The spinecor has been wonderful!! at our last visit to montreal she measured 11 degrees and Dr Coillard and Rivard said her back "looked great!!"

We feel so lucky to have found the Spinecor vs ridgid brace!!

Christine

amandap
01-12-2007, 05:03 PM
Lauralee,

I'm glad to hear that you already have an appointment scheduled. I know its hard to do but try your best not to worry too much until a diagnosis has been made by an ortho.

Shriners specializes in both orthopedi care and burns. Their website is http://www.shrinershq.org/Hospitals/_Hospitals_for_Children/ take a look for the nearest orthopedic center to you. We travel to Shriners Philadelphia but I am sure your son will be in good hand at whichever Shriners you go to.

Good Luck and keep me posted.

Amanda

lauralee76
01-12-2007, 05:33 PM
I cancelled my appointment at Children's Hospital. It made me nervous because usually I just do whatever doctors tell me to do :o .

I then spoke with Shriners. The woman I spoke to was actually entering in my application right when I called :D. She looked it over, asked for any other needed information, and told me that he will definitely be accepted based on the application, but it will need to go through all the necessary routes first. She explained that I will probably get a letter in the mail in about two weeks with an appointment scheduled date on it.

I am truly happy with my decision. When I set up the appointment at Children's Hospital, the woman I spoke with was not warm at all. She was not rude, but just all business. Shriners was very warm, answered all my questions, and really put me at ease. This helped take away my nervousness and truly made me feel empowered in my son's medical decision making process.