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momof2girls
10-21-2009, 02:56 PM
Hello,

I am posting for the first time, although I have been viewing for awhile. My 14 year old daughter is scheduled for surgery on 11/4. She has been through 2 braces and now surgery. She was diagnosed when she was 11 yrs old. We were told that she just had one curve at the time that measured 27 degrees. Slowly increased to what it is now, 2 curves, that measure 33 degress and 53 degress. We have changed doctors. Long story. Started seeing the new doctor in July. He suggested surgery. He is the one who found the two curves and slight rotation. First available surgery date was 11/4. We had the pre-op on 10/13. He suggested fusing from T3 to L2. What do we need to expect? Will she eventually be able to return to the colorguard team with the band? How quickly do they recover? Her doctor has her returning to school around 11/30.

Sorry for all of the questions, I'm just feeling a little overwhelmed.

gabs mum
10-21-2009, 07:25 PM
I remember when I first posted. The people on this forum are like angels.
You will get such wonderful advice and support it will just about make you cry.
I cannot give you much advice as our surgery is on the 1st of December.
about 4 weeks after yours.
All I can say is stay positive for you daughter.
Keep posting as well because you are sure to get some wonderful support and advice to get you through this.
Keep asking questions as well because there is sure to be someone on this forum that can help answer.
All the best and God Bless.
Donna

Pooka1
10-22-2009, 12:44 PM
HI. I will try to answer what questions I can and hope others will comment also.


(snip...) He suggested fusing from T3 to L2. What do we need to expect?

Well that 's a very broad question! In general you can expect her curve will be corrected, it will be stopped from progressing, and she will return to her life. :)


Will she eventually be able to return to the colorguard team with the band?

I am not so sure I know what that is... is it twirling large flags? If so, per the instructions I got for both my kids, that would be allowed after the recovery. Anything except bungee jumping is allowed after the recovery so color guard is including in "everything."

But of course, as with everything you read on this forum, you have to ask your surgeon. Whatever he says it correct, not what you read here about other kids. Your surgeon would know about any special circumstances that may not apply to others.


How quickly do they recover? Her doctor has her returning to school around 11/30.

(Forgot to answer this.) All kids are different. Whatever your doctor's experience is will be close. Your doctor quoted 26 days and that matches my first kid who returned at 25 days full time. My second kid is planning to return full time this Monday which would be 20 days. But she had a very easy time with surgery and recovery for some reason unknown to me at least compared to her sister. I would say she could go back part time this week but she has too much to work to catch up on. She sits at home and plows through that. It's block scheduling like college so you miss a day, you miss two days. So she is trying to catch up essentially 1.5 months in just several days. And she is doing it dammit! She blows me away.


Sorry for all of the questions, I'm just feeling a little overwhelmed.

Don't be sorry. Asking questions and posting testimonials is the purpose of this forum. So you're doing it right!

And everyone is overwhelmed. Knowledge is power. Learn as much as you can.

Good luck.

WNCmom
10-23-2009, 08:49 AM
Welcome!

My son was also diagnosed at 11, then fused at 13 nearly a year ago (we go for the 1-yr check-up in about two weeks). Your daughter's fusion will be short compared to my son's--he is fused T2-L4.

He returned to school full time at, I think, 3.5 weeks, although it was then time for winter break, so he had an extra few weeks, which was nice. Just remember every child is different--some take longer to feel comfortable in a school setting.

Things that come to mind: walking is important, and he did a lot of it post-op, increasing a little each week. Follow the instructions and do the breathing therapy post-op. A recliner was useful at home after surgery.

I have heard from other parents that the number 3 is important in recovery. You see big advances at 3 days, 3 weeks, and 3 months. That lines up with my experience. I agree with Sharon; I think color guard will be okay after surgery, but it will be a while, and your surgeon will have the last word on that. My son was given the okay for most activities after 6 months. I think you'll be surprised at how well your daughter does.

Please don't hesitate to ask any and all questions. When it was time for the surgery I felt well prepared (not that I wasn't still scared!) because of the people on this forum who'd already walked that road. All of us want you to feel prepared, too. It's one reason we hang around here.

Mary Ellen

momof2girls
10-23-2009, 10:58 AM
Thanks to everyone who answered my questions. It makes feel better hearing from people who have first hand experience.

Lauren told a friend of ours last night that she was finally looking forward to the surgery which surprised me because she has hardly talked about it. I think that it helped when we went for her pre-op appointment and her doctor answered her questions honestly and did not sugar coat everything.

To answer Pooka1's question, colorguard in band is using the flags mixed with some dance.

Her surgery will be done at the Blair E. Batson Children's Hospital in Jackson, MS. They are part of the University of MS Medical Center.

I guess I am wondering how flexable is their backs are after a fusion?

Pooka1
10-23-2009, 11:06 AM
I guess I am wondering how flexable is their backs are after a fusion?

My one kid is fused T4-L1. She is 19 months out and says she can't notice any change in back flexibility.

My other kid is also fused T4-L1. She is 17 days out and VERY STIFF!

debbei
10-25-2009, 07:38 PM
My one kid is fused T4-L1. She is 19 months out and says she can't notice any change in back flexibility.

My other kid is also fused T4-L1. She is 17 days out and VERY STIFF!

But that's the difference--time. When you first have the surgery, you feel like (sorry to sound so gross :D) you have a stick up your butt. After a while (1 year for me now), it feels 'perfectly normal.'

Good luck Momof2--ask all the questions you can think of; this forum is a tremendous help in getting us prepared.

Beckymk
10-25-2009, 08:02 PM
Welcome.

You have already had good answers. My DD is about 7 months post-surgery. She was something like T3-L2 (you would *think* I would remember but I never can -- basically she had 2 curves and was fused below neck to the first couple lumbars).

I don't know the weight of the flags. I know my DD couldn't lift more than 5 pounds for the first 3 months. It will all depend on the surgeon though.

Every child is different my DD was out of school for 7 weeks -- would have been 6 but the 7th week was a shortened week, so didn't make sense to go back as we got to keep the homebound teacher that week to tie up any loose ends.

It took mine a long time to really feel ready to be up & going again. I know when she was in PICU, she had a visit from someone who was up to a school dance a week after surgery. My DD was in no way, shape or form ready for something like that a few weeks after surgery much less 1 week. By the end of the 7 weeks, she was ready to be back up & going.

In our case, she can never do gymnastics (including tumbling, unfortunately, we specifically asked ) & football. I know she could go back to ice skating right now if she wanted to. We did find out just recently that it would be physically impossible for her to do sit-ups. We are still navigating things. She had her 6 month check-up & is doing great. She still can't do roller coasters but will be allowed to do that after her 1 year check-up.

I know my child would not have been up to doing flags that soon after surgery but that's just her. It hit her a lot harder than I think she expected.

Snoopy
10-26-2009, 07:44 AM
Hello,

First available surgery date was 11/4. We had the pre-op on 10/13. He suggested fusing from T3 to L2. What do we need to expect? Will she eventually be able to return to the colorguard team with the band? How quickly do they recover? Her doctor has her returning to school around 11/30.

Sorry for all of the questions, I'm just feeling a little overwhelmed.

momof 2girls,

Feeling overwhelmed is perfectly normal.

My 18 y.o. daughter, Jamie is fused T3-L2 and had her surgery almost 5 years ago.

My youngest daughter is in marching band so, we are very familiar with High School color guard. I would say, that once she is one year post-op, she shoud be able to return to color guard. However, having said that, you need to be aware that they might need to adjust the routine to fit your daughter's flexibility. For example, she won't be able to arch her back and might not be able to get up off the ground as quickly as others. Speak to the band director and the person in charge of color guard and make them aware of her situation. Tell them soon, as they will probably start working on next year's routine as soon as this year's season ends. It shoudl not be a problem for them to work with abilities.

Talk to your surgeon. He/she will be able to tell you when she can return. You might find that she isn't allowed to return until one year post-op, but then again, she might be able to return sooner. Hang in there.

Mary Lou

momof2girls
10-26-2009, 08:28 PM
Thanks to everyone who answered my posts. You all have been very helpful.

Mary Lou,

When we found out that Lauren would be needing surgery, I spoke with the colorguard teacher and she told me that they would be willing to work with her in the routine. I really hope so because she enjoys being part of the colorguard. In fact the state marching festival was this past Saturday and our school placed 1st in our division. The kids were so excited.

Your older daughter's fusion is the same as Lauren's, how is she 5 years later? Does she have much pain? Did she have to change her lifestyle much?

Thanks,
Charlene

Snoopy
10-27-2009, 06:10 PM
Thanks to everyone who answered my posts. You all have been very helpful.

Mary Lou,

When we found out that Lauren would be needing surgery, I spoke with the colorguard teacher and she told me that they would be willing to work with her in the routine. I really hope so because she enjoys being part of the colorguard. In fact the state marching festival was this past Saturday and our school placed 1st in our division. The kids were so excited.

Your older daughter's fusion is the same as Lauren's, how is she 5 years later? Does she have much pain? Did she have to change her lifestyle much?

Thanks,
Charlene

Charlene,


First, CONGRATS ON TAKING 1ST PLACE!!! That's awesome!!


I thought your colorguard instructor would work with you if you told them ahead of time. I don't know you, but as I sat and watched the bands perform last night at Chapter Championships, I found myself watching the colorguards' movements and thinking about your daughter. :o I noticed that a lot of bands have one girl (or guy) in the middle of the band twirling a flag or rifle while the rest of the colorguard was moving around the field, so it would look very natural for your daughter to stand still while the others are doing other movements.

Jamie will be 5 years post-op in December. She has never had pain--before or after surgery (except for pain from surgery, of course). She has had to change very little in her life. For her, the roughest part was the one year long restrictions which kept her from some of her favorite activities--deer hunting, riding our 4 wheeler, jumping/diving into a pool--but once they were lifted, she went right back to all of her activities. She cannnot do sit-ups which is fine with her! :D She is not supposed to do things like skydive or bungee jump which is not an issue for her!

She is a healthy, active 18 y.o. college freshman. She hasn't let her surgery hold her back from doing anything!

Mary Lou

jjsmom
11-02-2009, 11:54 AM
mom of 2 girls,

I just wanted to send my best wishes to your daughter and you this week. I will be thinking of you and I wish her a good, quick recovery.

I am also a mother of 2 girls, and my 14 year old is having her surgery in 5 weeks.

Barbara

momof2girls
11-02-2009, 01:38 PM
Thank you so much. I will try to keep everyone posted on her surgery.

Lauren seems to be handling this really well. She is very calm and I hope it stays that way. I am concerned about the morning of surgery.

I hope everything goes well with your daughter's surgery and that she has a speedy recovery as well.

Charlene

gabs mum
11-02-2009, 03:34 PM
HI,
I am posting to say good luck. My daughters surgery is on the 1st of December. We are in Australia.

I know how you are feeling. We have done a complete circle and are back to feeling very anxious again. My daughter was upset last night, worrying about the operation.
I just pray it all goes well and she can have a happy and full life without letting her scoliosis stop her from achieving her goals.
I am trying to get orgainized now for hospital and home.
Anyway, I will be thinking of you. Watch out for our posts come surgery time.
God Bless
Donna.

momof2girls
11-02-2009, 05:21 PM
Donna,

Thanks so much for the prayers. I know what you mean. I have gone from ok let's get this over with to oh my it's finally time. I know that we are doing the right thing but as a mother I always wonder about the outcome. I spoke to the nurse today and reminded me that we really did not have much choice since her curves keep increasing.

Lauren seems to be okay right now. She has asked several questions the last few days. She wanted to know is she would be able to feel the rods and screws. If she would wake up in ICU in pain? And of all things how should she wear her hair. When I spoke to the nurse, I aksed these questions for her.

I am trying to get everything together for Wednesday too. Her 21 yrs old sister has been a big help. She is a very organized person.

I wil try to post as much as I can.

I hope everything goes well for your daughter too. We will be thinking of her too. I tell Lauren some of the stories from forum.

Thanks so much,
Charlene

WNCmom
11-03-2009, 09:12 AM
We'll be thinking of Lauren and you tomorrow, Charlene...

Mary Ellen

pmsmom
11-03-2009, 09:49 AM
You and your family will be in my thoughts and prayers. My dd is 6 1/2 wks. post op and doing well. Soon you'll be on the other side!

But the members of the forum will be here with you every step of the way!

God bless you!
Marian

Pooka1
11-03-2009, 06:28 PM
Hello,

I am posting for the first time, although I have been viewing for awhile. My 14 year old daughter is scheduled for surgery on 11/4.

Good luck tomorrow.

I'll be thinking of you.

sharon

laurieg6
11-03-2009, 08:12 PM
I just want to wish your daughter a very successful surgery and a speedy recovery.

All the best,

momof2girls
11-03-2009, 09:59 PM
I wanted to thank everyone for their thoughts, prayers and best wishes. The answers, advice and encouraging words that I have received from this forum have been a big help.

I guess reality is setting in with Lauren. She has been extremely quiet tonight. I just hope she is able to sleep tonight. We have to be at the hospital at 7 a.m. Hopefully, she will be the first case unless a younger patient in scheduled.

Thanks again and I will try to keep you posted.

Charlene

mariaf
11-04-2009, 08:00 AM
Thinking of Lauren and her family today and hoping that everything goes perfectly and she's soon on her way to a speedy recovery!

WNCmom
11-04-2009, 01:10 PM
Thinking of Lauren...

Mary Ellen

gabs mum
11-05-2009, 02:06 AM
Our thoughts and prayers are with you all.
Donna.

ddb
11-05-2009, 08:04 AM
Thinking of you all during this and hope it all went smoothly.

Dee