Many ????s - Doctor recommends surgery for 11 year old daughter

[Cheryl M]

Alice,

Once Briann was recommended for surgery (August 05) both doctors at Shriners and Ortho told us to throw the brace away. I still made her wear it at night. We got another opinion in early October and her curve had progressed 15 degrees. I made her start wearing the brace again until surgery in November. We have no idea if she would have progressed that quickly with the brace on but if I had it to do over again, she would have continued with the brace. Doctors don't seem to think a 10 degree difference is no big deal but when it's your child a 1 degree difference is big to me.

You will get so many opinions for different people. Just pray and go with your gut. We got a lot of criticism from well-meaning family members who just didn't understand. I finally just asked them to support our decisions unless they had done the research and were willing to go to every doctor appt. with us. I know they meant well but scoliosis is not simple and it is so different with every patient.

My prayers for you and your daughter as you make decisions for her future.

Cheryl m

[MATJESNIC]

Hi Alice,
We live outside of Phila, so we go to Shriner's in Phila. Nicole was diagnosed about 8 months ago when she was 11 and a half. She had one thorasic-lumbar curve of 37 or 40 (everyone gave a different reading). She had one small compensatory in the upper thorasic that nobody even mentioned. During the last 8 months she has been in spinecor and a lot has happened. She went through her big growth spurt and got her period a few weeks ago.

She grew about 2-3 inches. A few months ago, her bottom curve had gone down about 5 degrees, and now it is at 40-41. Her top curve is now 39, so I think it went up 10 degrees. The docs at Shriner's said that no brace could address the top curve.

So even if the spinecor works on the bottom curve, we have no control over the top curve. That is so frustrating.

Anyway, she has never had an MRI of her spine. She has seen a total of 4 different orthopedics, 2 docs at her brace center, and her weekly chiro. Everybody says this is just the typical idio. scoli.

I believe the majority of Nicole's growth is finished. No woman in our family is over 5'5" including my oldest daughter. The orthos at Shriner's told us to continue with bracing and come back in 6 months.

Melissa

[aliceinnc]

Cheryl,
Thanks for your post. I really feel that it is a good idea to have Lydia continue to wear her brace. I'm like you, a one degree change is a big deal to me.

It is difficult to try to explain the situation to friends and some family members, because they simply do not understand the importance of the decisions that have to be made. I feel like I want to say to some that this is a VERY big deal - that is why we are taking it so seriously. A well-meaning person at church said a few things that kind of minimalized the situation.

Isn't your daughter scheduled for additional surgery soon? I know that must be so hard to deal with. I will keep her and your family in my prayers.

Alice

[aliceinnc]

Melissa,

I have read so many good things about the Shriner's Hospital in Philadelphia. In fact, we originally wanted to ge there, but I was told by a Shriner's representative that we have to apply to the closest hospital. I'm sure the doctors in Greenville are great too from some of the things I've read on this board. Originally, I was interested in the stapling surgery done in Philadelphia, but I'm not sure that would be the best surgery for Lydia or if she would even qualify.

At what point, do your daughter's doctors recommend surgery. I know they want her to get through another six months with bracing.

I will pray that Nicole's curve remains stable and that she will not have to have surgery.

Alice

[MATJESNIC]

Thank you for your prayers. They actually did not tell me at what point they would recommend surgery. I was the only one who mentioned surgery and they just said that it was too pre-mature to discuss it at this point and that she should continue with a brace.

We looked into the stapling. The best candidates are those who are younger and have a lot of growing left. They believe Nicole is almost done growing. They also prefer under 40 degrees. But I know they will do stapling with kids in that range who have lots of growing to do.

You don't need to rush into surgery. That is the good thing. Take your time and get other opinions. I am praying for your daughter, as well.

Melissa

[Cheryl M]

Alice,

Yes Briann is going in for another surgery. Briann's spine is not flexible at all. Another big strike against her. Some kids can wait for surgery and their spine just moves easily back into place. When the doctor went to straighten her spine in November, the screw on the left side at L3 popped out. She was losing a lot of blood so he needed to close and one side was only fused to L2 and that part of her curve is moving. We could wait and see but given Briann's history of rapid progression and her rigid spine we felt we should rather go ahead and do it now. Waiting could possibly mean fusing further to L4 or L5 and then she would also be in high school. This surgery will be minor compared to the last. I'm ready to put scoliosis behind us and move on.

Thanks for asking and thanks for your prayers. Our surgery date is 5/15. I hope my mother's day present is a successful surgery and a super fast recovery.

Cheryl M

[aliceinnc]

A Few More Questions

As you know, we haven't decided yet on surgery and are waiting on an appointment for a second opinion, but I have some more questions?

The surgeon Lydia has seen says 2 units of blood is all that we will need to donate. Will this be enough?

He also wants to use bone from the bone bank for the graft. Has anyone done any research? Is this safe? Is it as good as a graft from my daughter's hip?

What types of pre-op testing will be done? I know blood work, but what does this show? Also, will they do any other types of tests? of her heart or anything?

Lydia's rib hump is very prominent, but the surgeon says this should be corrected with the fusion and that a thorcoplasty is unnecessary. Does this sound right? Is it because she is so young (11)?

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Cheryl,
I hope you get the Mother's Day gift you want of a successful surgery for your daughter. How long should her hospital stay and recovery be?

Alice

[Snoopy]

Alice,

My daughter is almost 17 months post-op, so I thought I'd try to answer some of your questions. Jamie's doctor wanted 4 units of blood, but she was only able to donate 2 units. They gave her both units in the O.R. Jamie's doctor used bone he took from her back (he did several osteotomies) but I would have been comfortable if he had used donor bone. I know from my dad's back surgery and from others on this forum that the graft site is sometimes more sore than the back surgery site. Jamie's pre-op was pretty simple-basically just a routine physical-no EKG or anything like that. Jamie did not have a thorcoplasty but I think we got an excellent result from her surgery. Her Scoliosis before surgery was about 46* and it corrected to about 14*. Hope this helps.

Mary Lou

[mariaf]

Hi Alice,

You do not need to apply to the closest Shriners Hospital. You can go anywhere. The one in Philadelphia is among the very best. I know folks whose kids have been treated there who have come from Texas, Kentucky, etc. Call the hospital in Philadelphia directly, if you have not already done so, and ask if you can apply there. Your daughter MAY even be a candidate for the stapling, which as you probably know is a less invasive surgery than fusion. Not everyone is a candidate, of course. It would depend on how much growing your daughter has left to do and how flixible her curve is when a bending x-ray is performed...but I wouldn't completely rule it out until those two factors were determined.

Best of luck to you.

[nikyergen]

Alice,
My daughter just had her one year checkup, about 45 days late because of our schedule, yesterday. She is 17, almost 18. She had donor bone, as the doctor felt she would heal quicker than if he took a bone graft from her hip. Everything healed just wonderfully and she has had all restrictions lifted. She was fused from T2-L2 and had an 88 degree curve. To look at her today, if you can't see her scar, you wouldn't know that she ever had surgery, or even had a problem with her back.

Crystal's doctor also said she could donate two units of blood, if there was time, but because of the fact they recycle the blood at Shriners, they probably wouldn't even use it. Crystal was in surgery for 7 hours and didn't take any blood.

Also, my youngest daughter had a great report from the doctor yesterday too. No More Brace. Yeah.

So, as you can see, we had great checkups yesterday and everyone is thrilled at our house.

Maria is correct, apply to any Shriners you want. We use the Shrine Hospital in Portland, Oregon, and are absolutely thrilled with them.

Crystal is now scheduled to have her feet operated on May 30, 2006. Once they are completed, I think we will have this all behind us. Which is a great relief.

Things will be fine, but I won't lie, it is scary as the parent.

Nikki

[mariaf]

Hi Nikki,

I'm so happy to hear ALL of that great news!! It's inspiring to hear how well these kids do down the road after surgery. And your youngest must be thrilled to be rid of her brace!! Just curious - How old is she now and how long had she been wearing it? Again, congratulations on the great reports at the doctor's office - I know how happy everyone must be in your house!!

take care,

Maria

[cherylplinder]

Alice,
Rachel is still braced.I am not sure exactly where her curve is. Somewhere in the 30-38 degree range. (I've had more than one measurement from different docs. Don't know which is closest.)
She is in the Spinecor brace. After her next followup, I will know more about how the brace is working. I am praying it will still help her. There is at least one case study on Spinecor website with a 36 degree curve in a 9 1/2 year old girl with excellent results. Until someone says surgery now, I won't throw in the towel.
I think the Shriners doc would only fuse the upper curve at this point, but felt if the surgery were done to soon, in his experience, the lower curve would progress and need additional attention. So he said both things. He said he would do surgery at around 45 degrees, and he also said that if it were too soon in her growth the lower curve would progress. He didn't expound any further. It is a bit confusing. I suppose you have to do the best you can at the moment.
Hugs,
Cheryl

[cyprusmom]

Pola,
How many more meters do you think she will grow? Are you and your husband tall?
I am thinking of you my friend.
Hugs
Cheryl

Hi Cheryl and everyone,
my husband is 6'4'' and I am 5'6'' so I believe my daughter who is now 1.61m(thanks to Alice I know that's 5'3'') should get to be taller than me. I can see how her large curves (T50, L30) are keeping her by 1-2 inches shorter now.
Pola

[cyprusmom]

Alice,
My daughter just had her one year checkup, about 45 days late because of our schedule, yesterday. She is 17, almost 18. She had donor bone, as the doctor felt she would heal quicker than if he took a bone graft from her hip. Everything healed just wonderfully and she has had all restrictions lifted. She was fused from T2-L2 and had an 88 degree curve. To look at her today, if you can't see her scar, you wouldn't know that she ever had surgery, or even had a problem with her back.

Things will be fine, but I won't lie, it is scary as the parent.

Nikki

This is so great to read Nikki. All of us parents who are still in the 'waiting' for surgery or still researching and trying to make sure we make the right decision, when reading your post how noone can tell your daughter ever had a problem with her back is a relief. My greatest fear is the permanence of the fusion and how it will affect her in her daily activities. I hear more and more of kids who go back to normal life and forget about it....I hope it will be the same for all of our kids who had or will have surgery.
You said she was fused from T2-L2, would that be for a single curve?
Pola

[LeaEvelyn]

Hi Cheryl M,
I am assuming your daughter has to have a second surgery for scoliosis, right? Well, rest assured, you are not the only one. When my son had his first surgery, he was fussed from T-3 to L-1. He had this done in November 2004. By January 2005, we found his surgery was not a success. He was starting to develope what his surgeon called an "Add on Phenomenon". The bottom of his spine at post op was like 17*, we asked if that was normal, and was told it was, and to expect it to be even straighter at his next appointment. Well, It didn't work out that way for him. His eight week post op it progressed to 25*. He was put into another brace to try to stop it from further progressing. It didn't work for him. He had a second surgery in March 2005. This has him fussed down to L-3. I just wanted you to know, you are not alone. Shane wrote a story about his experience with both surgeries, it can be found on the SpineKids support site. The page number, if you are interested is www.spinekids.com/shane.shtml . I want to add to you, that he did really well with the second surgery. It wasn't as many vertabras they were working on this time. Recovery was much quicker too. If you want to e-mail me directly, I can be found at llentz5525@yahoo.com. Just put scoliosis questions, I always open anything with that label. I'll be praying for you and your family. Take Care.
LeaEvelyn