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

  1. #31
    Join Date
    Jul 2005
    Location
    North Carolina
    Posts
    178
    LeaEvelyn,

    Thanks for your post. Briann really wants to go to school that last week of school but that will only be 2 weeks post-op. Her doctor thinks it's possible for her to go part time that week. What do you think? She at least wants to go for 8th grade graduation which is nearly 3 weeks post-op. She is only having 1 vertebra fused but he is replacing the whole rod so her incision will be the full length of her back. Thanks for your encouragement and for your prayers. I'm ready to get number 2 and hopefully our final surgery behind us.

    Cheryl M
    NCM

  2. #32
    Join Date
    Oct 2005
    Location
    Michigan, USA
    Posts
    66

    Red face

    Hi Cheryl M,
    Shane is also in the eighth grade this year. After two weeks post op (of his second surgery), his doctor said he could go back to school. I didn't feel he was emotionally ready to go back, so I kept him home for about six more weeks. I had already arranged for a teacher to come in our home again, so there was really no point in sending him back too earily.
    Use your best judgement for sending her back to school. I quess I would judge it by how well she heals this time, and what frame of mind she is in. I know with Shane, he was devestasted to have to have another major surgery so soon after his first one. The only good thing he could find in it, was more time off school. He missed most of his seventh grade. But you can't tell by his grades this year, for he is doing really well in school. I think he is now finally at peace with everything.
    If you don't mind my asking, when was her orginal surgery, and what is the reason for this second one?
    Hope everything works out OK for her. Never hesitate to contact me for anything, ok.
    LeaEvelyn

  3. #33
    Join Date
    Jul 2005
    Location
    North Carolina
    Posts
    178
    Briann's first surgery was on 11/28. The doctor intended to fuse from t4 to L3. For some reason the screw at L3 on the left side popped out of her peidcle. The doctor clipped the left rod at L2. The right rod went to L3. He hoped it wouldn't matter but warned us that he would have to watch this. That part of her curve is moving. It went from 22 deg. to 30 deg in 4 months. The doctor said we could wait but we risk going even further in the lumbar area and if we wait we would be looking at the start of high school. Given her history of quickly progressing curves, we decided to go ahead and fix it now. There is a slight possibility that she would never need this but it is slight!

    The doctor doesn't know why it pulled out. He said her pedicles were big enough and that he could have gotten the screw at an angle but most likely it was just from the pressure of straightening her spine. He's a good doctor with a great reputation in our area and I don't think he's ever had this happen before. lucky us! I'm just ready to get it over with.

    Thanks for asking.
    Cheryl m
    NCM

  4. #34
    Join Date
    Oct 2005
    Location
    Michigan, USA
    Posts
    66

    Red face

    Cheryl M,
    I totally understand. Shane's doctor had never experienced a curve adding on after an orginal fusion either. I'm not kidding when I say he was as upset as we were with this. He told us he took the x-rays everywhere he went, just to get other doctors opinions. And he does travel around, for he is on the North America Board of Orthopaedics. So we also know he is a good surgeon.
    We never once blamed him, for Shane always seems to be the one that something different happens to. I had to looked at it as a learning experience for all of us. I hope yous can find peace, for I believe everything happens for a reason. Sometimes we never find the answers, but maybe we are not meant to know. Please keep in touch and let me know how Briann makes out, ok.
    Sincerely,
    LeaEvelyn

  5. #35
    Join Date
    Apr 2006
    Posts
    20

    Back to school

    My daughter is now 4 weeks post op from a spinal fusion and thoracoplasty. She still has not gone back to school. She has a homebound techer come to the house twice a week for about an hour. She would like to go back to school, but is too weak and tires easily. She graduates from 8th grade on June 15th. There is an activity night planned in June for the eighth grade only. We will have to wait and see how she feels. Everyone heals differently. She has been tough. Good luck.

  6. #36
    Join Date
    Apr 2005
    Location
    Auburn, Illinois
    Posts
    31
    Our daughter is now 9 mos post op. Megan was 11 at the time of surgery. But, Megan has cerebral palsy and other issues, and her curve was thoracic and was close to 50, when surgery was scheduled, then 6 weeks later at surgery hers was at 75. It was beginning to crush her left lung. Megan was fused from top to bottom, complete spinal fusion, with union rod and wired.
    Hers was posterior only. She has done so wonderfully. (((((Hugs to you)))))
    The waiting and wondering is the worst part. This time last year I was a total mess, knowing that surgery was happening. All my love
    Tracy
    Wife to Scott, the most incredible man God put on this earth, Mom to Joshua who is 16 1/2, Megan who is 11 with CP, seizure disorder, sleep apnea, coritcal visual impairment, non mobile, non verbal, and scoliosis, but the GREATEST blessing we could of ever hoped for,who had posterior spinal fusion surgery on July 19th, 2005, fused from neck to bottom and has the titanium union rod wired in place. and Jacob 3yrs.....Can't forget our16 mos old golden lab puppy, Molly.....

  7. #37
    Join Date
    Mar 2006
    Location
    Cincinnati
    Posts
    42
    Cheryl,
    My 15 year old daughter is 4 weeks post op today. I can't believe how well she is doing. I thought she would be going to school 1/2 days this week, but she ended up going all day this whole week. Her teachers were not very supportive in getting her work to her and she was getting stressed out about getting so behind. So much for our 504 plan. I have to say I was really saddened and disappointed by her teachers lack of response and concern. Maybe They should read this forum to see how tough things are for our kids. God love them all!!! You and your daughter are in our prayers as you head for this next surgery. Peace and blessings.
    Kate

  8. #38
    Join Date
    Mar 2006
    Location
    DFW, TX
    Posts
    159

    Shriners

    Have you found out more about Shiners in Erie, PA? I am wanting to apply directly and go there since they use Spinecor and my daughter has been braced with Spinecor. I would like their expert opinion. The cost even with insurance for another year and a half mininimum, not including the expense to travel with car rental and hotels since there is not a Spinecor doctor close to us. The closest is 5-6 hours by car. I hear wonderful things about Shriners

  9. #39
    Join Date
    Mar 2006
    Location
    DFW, TX
    Posts
    159
    Quote Originally Posted by cherylplinder
    Alice,
    I took my ten year old to Shriners in Erie, PA a couple of weeks ago. She has not begun her adolescent growth spurt yet. She has a thoracic curve in the vicinity of 30 to 38 degrees. Her lumbar curve is compensatory at 27 degrees.
    Dr. Sanders said that no brace would prevent her from progressing to surgery, but recommended that I hold off as long as I could because, in his experience, the lumbar curve would deteriorate after fusion and require an additional later surgery. He told me to wait until around 45 degrees or so, if we could.
    I have e-mailed him to ask if any brace will lessen the curve she enters surgery with. Haven't heard back yet.
    Blessings,
    Cheryl
    I am sorry to hear that. Did you already have Spinecor when you went? I am hoping to continue at Shriners in Erie, PA if possible. I am calling tomarrow. I have been watching posts and am finally going to pursue it.

  10. #40
    Join Date
    Jan 2006
    Posts
    513
    I don't think you will have any trouble getting them to follow you. I guess I don't know a lot other than they were very kind to me. I only waited a few weeks for an appointment. He did not discourage me from keeping Rachel in the Spinecor brace. He just said that according to their study, she would progress to surgery.

    I was encouraged by her last visit in Montreal. At the very least her curve held, and she grew a couple of centimeters. The first case study on the Spinecor website is a 9 1/2 year old with a 36 degree curve that, I think, went to 1 degree. That leaves room for hope. I am still very hopeful.

    Your results sounded excellent! I was so excited for you! And no compensatory curve!
    I was a bit confused, though. Did she go down 10 degrees out of brace, or 10 more for a total of 15 degrees decrease in brace? Remind me of where you started, and where you are now, in and out of brace.

    Dr. Sanders was not trying to do anything but convey the results of their study. I'm sure if I wanted to be adjusted there, that they would have been most helpful in doing that. They were all very kind.

    Hugs,
    Cheryl
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  11. #41
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    To All:
    I think you will find your experience at any Shriners Hospital incredible. The best part is that they only do orthopedic surgeries.

    Like Alice's dad, my husband is a Shriner and I am so proud of that. Because of these wonderful men and their hard work, children all over the country get the orthodic treatment they need, which may otherwise go untreated because of the expense and what insurance doesn't cover. When my husband became a Shriner, I never thought I'd see the day that one of our daughters, let alone all three of them, would have to use the Shrine Hospital. Yes, I said all three. They all have difference levels of scoliosis/kyphosis. We have one more surgical trip to make at the end of this month. Our 17 year old is having her feet operated on, they have some hammer toes and bunions that hurt her all the time. That surgery happens the 30th of May. Hurray. The final one we've been waiting for. We could of had it done sooner by a foot specialist closer to home, but I have a high respect for the Shriner Hospitals and the care they have given our children. I wouldn't choose any other hospital or doctors for orthopedic treatment.

    nikki

  12. #42
    Join Date
    Oct 2005
    Location
    Michigan, USA
    Posts
    66

    Red face

    Hey Cheryl M,

    I haven't heard from you in a while. How did Briann's second surgery go? Have been thinking of you's often. Hope all is well.
    Sincerely,
    LeaEvelyn

  13. #43
    Join Date
    Jul 2005
    Location
    North Carolina
    Posts
    178
    Hi, thanks for thinking of us. Her surgery went well. She had her post-op yesterday and she is cleared to do whatever she feels like doing. Monday will be 2 weeks and she's dying to go back to school so I'll probably let her go for a few hours.

    I said in another post that I have been so consumed with "us" and I now want to start focussing on others and pray that this is the end for us.


    Happy Memorial Day
    Cheryl
    NCM

  14. #44
    Join Date
    Oct 2005
    Location
    Michigan, USA
    Posts
    66

    Red face

    Gosh Cheryl,
    I'm so happy for yous. I hope it is the end for her surgerys too. My son goes next month for his 15 month post op, from his second surgery. For him, the second surgery seems to have fixed the problem. {Keeping our fingers and toes crossed too, that this remains so}. I hope this will be true for you too. Take Care and tell your daughter happy eighth grade graduation!!!!
    Sincerely,
    LeaEvelyn

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