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Thread: Daughter needs Surgery

  1. #1
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    Daughter needs Surgery

    I have been reading and gathering strength from this forum for a few month. The support here is amazing!! Yesterday was our follow up visit and the news was surgery. Not new to us - Dr had said this at last visit. She had been been seeing a different Orthro who referred us to this specialist.

    The first time we heard surgery it blew us away. I think she went through all the stages of grief in the following months. I waited to see if she would come around to the idea - at first she was having no part of it. She did, and has matured so much in these past few months. She didn't even cry with the news. She understands the need for this now.

    Kate will be 16 on Thursday, is a Sophmore in HS and has a 51* Lumbar curve which is noticable by a dip in her side. She has a 23* Thorasic curve he feels will straighten with this procedure. She is uneven, and Dr thinks he can repair and line her up even by fusion to T-11 -> L-3.

    My questions are many for those who have been through this, but most pending now is he doesn't want to wait for a summer surgery. Kate is very worried about falling behind in school. I noticed that many on here have had or are planning surgeries during the school year. Dr. said we would be planning one month out of school. Is this realistic? Can she be ready to go back to school only 3 weeks from hospital release? I'll be contacting the school to see what is offered for home bound studies.

    I've read a lot about wonderful recovery, and the advice everone gives has been so helpful. I'm so blessed to have found this forum. The courage and strength of everyone here has certainly help me to help my daughter through this tough time.

    Dee

  2. #2
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    Hey Dee,

    Glad you are getting more than one opinion and that you are confident with your present specialist. That is everything in my book.

    First your daughter is having a very short fusion compared to most of the other kids here. Is that going to be an anterior procedure?

    My questions are many for those who have been through this, but most pending now is he doesn't want to wait for a summer surgery. Kate is very worried about falling behind in school. I noticed that many on here have had or are planning surgeries during the school year.
    Both my kids had surgery during the school year. Just bad luck combined with relentless curvature. You and your daughter can deal with this.

    Dr. said we would be planning one month out of school. Is this realistic? Can she be ready to go back to school only 3 weeks from hospital release? I'll be contacting the school to see what is offered for home bound studies.
    Well I would have said that with her short fusion that she would be back possibly before three weeks given some kids on this group have had much longer fusions and been ready to go back very early.

    I don't think you can know ahead of time when a kid can go back. My kids are identical twins and had very different recovery trajectories. I don't know why some kids recover faster than others despite the same levels fused in my kids' cases.

    Your daughter might be able to go back to school at three weeks but you may want to consider if she can catch up with her work faster if she stays at home. Both my kids really only had about a week to catch up with ~3 weeks of work.

    Homebound criteria only kick in after 4 weeks here. You should find out when they kick in by you.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
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    Hi Sharon- Thanks for your reply. It's so helpful to have someone who has gone through this to ask questions especially the ones the doctors can't answer.

    Kate is going to have a posterior procedure. I'll check on the Homebound policy here in Va. to see if that will be available (thanks for the info on that). The Dr mentioned it could take time to get in place, but I'll check to see if there is required absence timeframe. She is in her Sophmore year of High School, and really has a full class load. They do classes every other day for 90 minutes so a lot goes on in one day. Unfortunately she doesn't have any electives, and one day she goes straight through lunch.

    I've followed Willows progress and saw the hug issue. I hope she is doing OK.

    Dee

  4. #4
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    Dee,
    I am in Northern VA and work for FCPS. I had a similar fusion as your daughter, though I had an anterior approach. Let me know if you live up here and I will send you a private message.
    Kathy, 43
    Diagnosed as a teen
    Boston brace 2 years
    63 degree lumbar curve
    Surgery August 26, 2009
    Anterior approach fused T12-L4
    now 28 degrees

  5. #5
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    Hi Kathy - thanks for the offer. Any info would be great!! I live in Va Beach. Daughter will be going to CHKD for surgery with Dr. St Claire. We were refered to him by a different Ortho because he specializes in Scoliosis. He was very positive with her about recovery and said about a month out of school during recovery. It seems so hard to believe, but in reading through some others stories with longer fusions it seems very possible.

    Dee

  6. #6
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    My daughter's surgery was Oct 19

    Hi. This is my first time posting.My name is Liz, my daughter is Amy. My daughter's surgery was October 19. So, this is day 11 after surgery. She had a posterior spinal fusion...T2 to L3. She is a sophomore and is also on block scheduling. This was her first full week at home after surgery. I can tell you she didn't even THINK of schoolwork this week. She is on the homebound status with her school. Realistically I don't think she'll be ready to look at her books until next week. But here's the thing. It is really major surgery. Everything just has to go on hold - at least for a little while. I am in favor of her staying home another two weeks, maybe going to school during the fourth week to pick up assignments, touch base with teachers..see friends...but not much more than that. The other thing to keep in mind besides the physical recovery, is the emotional recovery. After surgery, there is a whole new body image to get used to. My advice....don't worry about school. They'll make it up. I think it's really important to have ample time to recover and regain strength.

    We see significant progress every day. Right now, she is outside on a walk with her girlfriend. It's a hard road, and it's a day at a time. I wish she never had to do this, but she did. Hopefully it will save her from other medical complications down the road, and she will be stronger and healthier because of this.
    Liz
    mother of Amy, age 15
    Spinal fusion 10/19/09
    T2 to L3

  7. #7
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    Quote Originally Posted by ddb View Post
    Hi Kathy - thanks for the offer. Any info would be great!! I live in Va Beach. Daughter will be going to CHKD for surgery with Dr. St Claire. We were refered to him by a different Ortho because he specializes in Scoliosis. He was very positive with her about recovery and said about a month out of school during recovery. It seems so hard to believe, but in reading through some others stories with longer fusions it seems very possible.

    Dee
    In re the month time period out of school, that is what you will see stated elsewhere, not just by your surgeon...

    1. From the paperwork I got from our surgeon: "Usually the child is able to go back to school 3 weeks after the surgery. An absence of 4 weeks is the usual criterion for obtaining homebound school instruction and most patients are back at school by that time."

    2. Our surgeon told me directly to expect an absence of about 3 weeks.

    3. Texas Scottish Rite Hospital for Children (a world leader in the treatment of pediatric orthopedic conditions per their claim): "Scoliosis surgery usually takes several hours. Most children go home within a week of surgery and don’t need postoperative bracing or casting. They can usually return to school three weeks after the surgery and should be able to resume all regular activities within six months."

    4. Scoliosis Research Society: "The patient can perform regular daily activities and generally returns to school in 3-4 weeks."

    5. On that fusion surgery video from somewhere in the midwest (page 10 of the transcript at http://www.or-live.com/transcripts/2...k_1563_321.pdf), the surgeon said most kids are out of school 2-3 weeks but some can get back to school in a week or so. Now I'm guessing the shorter time period is for shorter fusions like your daughters.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #8
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    I agree with what Liz wrote.

    I'd say the first two weeks were lost to any productive work due to tiredness and narcotic usage.

    Both my kids started trying to catch up at the beginning of the third week.

    In re homebound, I never applied for that with the first kid who was in middle school because the surgeon was telling me she would likely be back before it kicked in and he was correct.

    For the second kid, I again was not going to apply because I assumed she would be back before 4 weeks also but the high school sort of insisted. They also confirmed it only kicks in after 4 weeks. So the surgeon and I filled it out and I submitted it.

    Although my kid did return before the 4 week period, the counselor said something that lead me to believe that once it was approved (and it was) that her absences would be excused. Well I don't see why I needed that rather than just a simple note from the surgeon to get her absences excused. That's all it took for the first kid. And it's not like they will be sending tutors out so I don't really understand "homebound" versus "surgeon's note." Clearly I'm missing something.
    Last edited by Pooka1; 11-07-2009 at 08:44 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #9
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    Jul 2009
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    Sharon,
    Here in Northern Virginia "homebound" means that teachers are sent to the students' homes. We have educators who, for whatever reason, choose to be homebound teachers and that's all they do. Of course it might differ between various school districts. But, you're right, it's something that many parents are unaware of and I doubt that most classroom teachers have experience with it. One really needs to communicate with the right people in the school system.
    Kathy, 43
    Diagnosed as a teen
    Boston brace 2 years
    63 degree lumbar curve
    Surgery August 26, 2009
    Anterior approach fused T12-L4
    now 28 degrees

  10. #10
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    Jul 2009
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    Dee,

    I will be very interested in keeping in touch with you...for another reason. My 12 year old son has pectus excavatum (his rib cage caves in). He looks like he has scoliosis, though his spine is straight so far. He has one leg longer than the other, which makes his hips uneven. But no rotation so far...though he hasn't had a growth spurt yet. ANYWAY...he is very self-concious about his chest and since my surgery, has been asking about surgery. Dr. Nuss is at CHKD and has specialized in the Nuss procedure which is a minimally invasive approach to correcting this. I could probably find someone up here, but if we choose to go this route at some point, I might find myself headed down there! Have to get myself healthy first!

    After my surgery, I have often wished I was younger. All the literature points to kids having a MUCH faster recovery! I'm sure she'll do great!
    Kathy, 43
    Diagnosed as a teen
    Boston brace 2 years
    63 degree lumbar curve
    Surgery August 26, 2009
    Anterior approach fused T12-L4
    now 28 degrees

  11. #11
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    Quote Originally Posted by kt2009 View Post
    Sharon,
    Here in Northern Virginia "homebound" means that teachers are sent to the students' homes. We have educators who, for whatever reason, choose to be homebound teachers and that's all they do. Of course it might differ between various school districts. But, you're right, it's something that many parents are unaware of and I doubt that most classroom teachers have experience with it. One really needs to communicate with the right people in the school system.
    Kathy,

    Thanks for that! So cool when folks with necessary expertise just happen to be on the group.

    I know they don't provide in-home tutors here in this county of NC for two reasons:

    1. with my first daughter in middle school, her English teacher offered to do any home-bound tutoring. He didn't know I didn't apply for it before he offered it. When I mentioned this to the counselor she told me they stopped doing that and the teacher clearly wasn't aware of it.

    2. the high school counselor confirmed there are no tutors sent home during one of our conversations.

    So I have to wonder if "homebound" here is just another way to say "doctor-excused absences." Or maybe it is the length of time. My daughter's approved period of time out of school was like 2 months if I recall (I didn't really pay attention). Maybe simple doctor's notes are only good for up to a month?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #12
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    Sep 2009
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    Kathy - Thanks for the info. I will talk to the school next week about what they offer. I looked through the website to see the rules and there are many. I'll talk to the school next week and from there I should know what to expect from them. I worry because my daughter has never been good with catch up school work.

    CHKD is a great hospital. I don't have first hand knowledge of this - never using them before myself, but have heard many great thing from people who have and workers there. I'm an EMT here in Va Beach and that is always where children are sent for the experts. I think I have heard of Dr Nuss, will check to see if this is the Dr who has been caring for an aquintances little one. I'll get back to you on that.

    Wishing a speedy recovery for you!!

    Dee

  13. #13
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    Sharon - Thanks for the info. I figured there would be down time during recovery. Katie has a heavy load this year and I know that most of it is beyond my helping with, lol, too many years out of school for me. Now if she needed extra help with horse care I'd be the one, but Alg/Trig - no way! I'll definatly check to see if it kicks in after 4 weeks or if because she is expected to be out 4 weeks or more they can get tutors here at the 3 week mark.

    Dee

  14. #14
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    Quote Originally Posted by ddb View Post
    Sharon - Thanks for the info. I figured there would be down time during recovery. Katie has a heavy load this year and I know that most of it is beyond my helping with, lol, too many years out of school for me. Now if she needed extra help with horse care I'd be the one, but Alg/Trig - no way! I'll definitely check to see if it kicks in after 4 weeks or if because she is expected to be out 4 weeks or more they can get tutors here at the 3 week mark.

    Dee
    Dee, the school simply has to have some way of helping these kids catch up. My daughter got extra time to finish the art work for example. The only two classes I could help my daughter with were Geometry and Biology. But if I couldn't I guess she would have had to go to the help sessions.

    Do you have a horse? I have a horse. My daughters used to ride and liked it but they didn't love it. So they dropped the lessons. Me, it is beyond loving it... it is an addition.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #15
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    Sharon - yes I have two horses at home. One is mine - well now she is - the other is a friends. Both my girls love horses so when I purchased her she was a family horse. They too were not as horse crazy as me . Both have scoliosis and looking back my oldest was always told during her lessons (Dressage) she needed to work on keeping herself straight. Guess she really couldn't.

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