New to the forum - 11 yr old daughter - Brace for now

[jennilynn]

I'm new here. After a well placed kick to my daughters back in Karate class, we learned of a pretty good S curve in her back. Numbers are a 56 and a 43 and the Ortho surgeon says because she's nearly 12 and due for a large growth spurt, he wants to try to wait on surgery.

She got her Charleston brace a few days ago, which is paining her to no end... and the pads haven't been placed yet. poor baby. It doesn't help that the muscular injury is not yet fully healed and we're awaiting insurance approval for Physical therapy... hopefully that will help some.

Is it normal for a brace to hurt them? She says after 5 hours of wear (she was told to wear it 12-16 hours a night), she's having sharp stabbing pains in her mid-back area. I do have a call to the Doc, waiting for a call back.

Apparently surgery is a definate, but he hopes to wait until June 2011. Let her get over the growth spurt and then do it. However if the brace doesn't keep the curve at bay and it increases a lot in the next few months, in September when we return, we may be scheduling the surgery. If no surgery then, then we go again in December... check again.

It's amazing her prior docs didnt' find this, it took a PA at our urgent care to find it... her prior doc on the military base noticed a "slight" curve to watch, but didn't have us to xrays or anything a year ago... wish we had. I hate that she has to go through this... but at times wish we could do the surgery and get that behind us.

Thanks for the ranting time!!
Jen

[mariaf]

Hi Jen,

I'm sorry to hear of this new diagnosis for your daughter.

A brace can be tight and may cause discomfort for some patients (which often goes away as they adjust to it) but it should not cause a stabbing pain. Could the pain be from the injury she suffered?

As for waiting to do surgery until after your daughter's big growth spurt, I'm sure the doctor has his reasons (perhaps he wants her to gain more height - do you know how much more growing she is expected to do?)

On the other hand, if she's almost done growing, some doctors might prefer to do the surgery before the curves get any larger.

In any event, it's always good to get more than one opinion. I believe that at 56/43 degrees, the opinions will all most likely involve surgery, but there are different techniques, and doctors sometimes vary on which levels to fuse, etc.

Depending on where you live, I'm sure you could get some good recommendations here. If you live near a Shriners Hospital that might be a good place to start.

Best of luck and keep us posted!

[jennilynn]

more info on location

I'm in Yuma, AZ - which puts us 3 hours from Phoenix Childrens Hospital and 3 hours from San Diego. i'm going to ask for a 2nd opinion from Tricare (hubby just retired from the Corps)- see where we go from here. The doc in Phoenix is great... but I do want more info... he is very focused on the curves but not the swelling and pain in her back from the injury.. ugh...

Just want her to be happy and she's not so I'm of course upset for her.

Thanks!

Jen

[Gryffindor]

I'm glad you had a good experience with Phoenix Children's Hospital because our experience with their orthopedic unit was horrible.

If things don't work out with them you can always contact the El Zarabia Shrine in Phoenix to see if you can get in the Shriners program. The Phoenix shrine works with their hospital in Salt Lake City. They have outreach clinics in Phoenix about every 3 months.

[Snoopy]

Jen,

If possible, try to get a second opinion from Dr. Lee Segal in Phoenix. He is an amazing surgeon as well as an amazing person. I took my daughter for 5 opinions before letting anyone do her surgery and Dr. Segal was the one we chose. One of the things I like best about Dr.Segal is that he always talked to my daughter first--then he turned to me and asked if I had any questions. We were very sad when Dr. Segal left PA to go to AZ.

If you decide to see him and have any questions for me, don't hesitate to ask.

Mary Lou

[mariaf]

If things don't work out with them you can always contact the El Zarabia Shrine in Phoenix to see if you can get in the Shriners program. The Phoenix shrine works with their hospital in Salt Lake City. They have outreach clinics in Phoenix about every 3 months.

Great suggestion. In fact, while all of the Shriners Hospitals offer very good care, the one in Salt Lake City (much like the one in Philly) seems to be among the top rated by parents. Another thing is that the doctors at Shriners see a lot of juvenile cases. At 11 years old I'm not sure if your daughter would be considered AIS or JIS, but either way you can't go wrong with SLC Shriners.

Best of luck.

[ArabianFancy]

Sorry, I don't have any words of advice but do have a 12 year old who just went through surgery and can offer prayers for you and your daughter!
Gina

[jennilynn]

Update

Been awhile since I've been on - too darn busy with work, appts and college...

She's now 12, been in the brace for nearly 2 months and has had the final adjustment pad placed. She is still having alot of pain in her back, stabbing issues. her doc said she could resume basic karate, but no jumping jacks, etc. She can't even do that.

Needless to say, we are returning to Phx on Wednesday next week for a followup. The doctor never really addressed the injury she sustained... which is frustrating to me now. We did do physical therapy but it's just not helping her at all.

Someone mentioned seeing Lee Segal - actually he's in the offices w/ Dr. White and booked solid! I'm in the process of requesting a second opinion as well from Rady Children's in San Diego... just to see what they say. Our insurance covers it, so seems like the right thing to do.

I don't mind waiitng for surgery and her bracing, but she's still really hurting from that injury... and it kills me to see her in pain!

Jen

[Snoopy]

Someone mentioned seeing Lee Segal - actually he's in the offices w/ Dr. White and booked solid! Jen

That's not surprising. You might want to ask if you could be put on a call list (if they have one) in case he has a cancellation. He is amazing! Good luck.

Mary Lou

[Gryffindor]

jennilynn: Dr. White is who we had our first appointment with through Children's. I was NOT impressed with him in the least. He seemed far more interested in treating boys sports injuries than helping girls who had scoliosis.

If your daughter is in a lot of pain she may have something along with the scoliosis that could be causing it (has she had an MRI?), or her curves could be progressing faster than her back muscles can compensate for.

[jennilynn]

jennilynn: Dr. White is who we had our first appointment with through Children's. I was NOT impressed with him in the least. He seemed far more interested in treating boys sports injuries than helping girls who had scoliosis.

If your daughter is in a lot of pain she may have something along with the scoliosis that could be causing it (has she had an MRI?), or her curves could be progressing faster than her back muscles can compensate for.

You know, I was not that thrilled with White either... he just was more focused on the curve than the injury that brought the curve to our attention

we do have another appt on Wednesday with him... I have also requested from our primary doc and our insurance for a second opinion with a doctor at Rady Children's Hospital in San Diego and am awaiting that approval code so I can make her the appt. She's just in pain and I hate it for her. We've done physical therapy, stretching, etc. There's no relief for her... No MRI as of yet, but I'm pushing for SOMETHING to be done on Wednesday.

The injury was a kick in Karate to her back and it just happened to be placed at her upper curve, just a stroke of bad luck Poor child of mine.

Jen

[Gryffindor]

Extreme pain is how we found out our daughter had scoliosis.

Since its been 2 months since her kick to the back, I'm going to speculate that it's likely not the kick that's causing the pain (unless something happened to a vertebra).

Did they only take one x-ray during your appt w/ Dr. White? That's all he did for us. Then it took forever to get the x-ray from them and on top of it they tried to charge us to take a copy home!

A complete set of x-rays should have been done (frontal and sideways).

Considering the amount of pain your daughter is in I'd really push for the MRI just to confirm that there's nothing else going on within her spine. If the MRI comes back clean then you need to keep an eye on how fast her curves are progressing.

[jennilynn]

Extreme pain is how we found out our daughter had scoliosis.

Since its been 2 months since her kick to the back, I'm going to speculate that it's likely not the kick that's causing the pain (unless something happened to a vertebra).

Did they only take one x-ray during your appt w/ Dr. White? That's all he did for us. Then it took forever to get the x-ray from them and on top of it they tried to charge us to take a copy home!

A complete set of x-rays should have been done (frontal and sideways).

Considering the amount of pain your daughter is in I'd really push for the MRI just to confirm that there's nothing else going on within her spine. If the MRI comes back clean then you need to keep an eye on how fast her curves are progressing.

Yep, one x-ray. I came with a CD that had frontal and all that and he did one to include the hips there. With us getting another opinion, that doc wants the original scans done in April, then she said she's going to do a few there, to see where the progression is, if the curve progessing or not so much... the guess is it possibly is because last year (june 2009) her Primary Doctor did the bend over, check the spine, thought he felt a minimal curve there... but wasn't anything he was concerned with and here we are a year later with a 56 and a 43 or 53 and 46 So the doc in SD wants all the records I can dig up to see where were are 3 months later. From there I'll discuss an MRI as well. I hate for her to be in pain, her activity level is way lower, because it pains her to do much... ggrrrr. I want only for my child to be happy and pain free. I live with chronic pain that has yet to be diagnosed and I don't want her to live that way too.

jen