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Thread: A Poll: Over 5 years, 10 years, 15 years post op- How are you?

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  1. #1
    Join Date
    Apr 2011
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    4

    Question A Poll: Over 5 years, 10 years, 15 years post op- How are you?

    A brief background- Our daughter, Madisyn, (age 10) was just diagnosed with scoliosis. We are waiting to meet with the surgeon in a few weeks after her MRI results come back. Primary surgeon- Siambanes at St. Joe's tampa. We met with his partner that doesn't perform the scoliosis operation. He stated she's over 50 degrees and she will need surgery. I have no clue Thorasic, Lumbar, nothing. But I know it's a big S. We were in shock and unprepared as we knew absolutely NOTHING going in.
    We will see two other surgeons. 1. Neustadt at All childrens in St. Pete and 2. (if we can get in) Shriners in Tampa

    I don't know her risser but she's not hit puberty and has at LEAST 10-12 more inches to grow, easily (Mom and dad are both 5'10 she's not even 5' yet)

    We're concerned and need to know how this will change her life in the long run.

    So, please help me with a poll and tell us-
    1. How many years post op are you? (we are looking for long term results maybe 5 years, 10 years, 15 years post op)
    2. Are you in pain?
    3. Were you in pain before the surgery?
    4. Have you had normal relations with others?
    5. Do you feel any part of your childhood was stolen?
    6. Did the surgery improve your life?
    7. Did you have any complications?
    8. If you had the option to go back- would you do it again?

    Is there anything else you'd like to share?

    I appreciate all of your thoughts and efforts in advance

    Madisyn's Mom

  2. #2
    Join Date
    Mar 2011
    Posts
    9
    I dont have surgical experience but wanted to tell you that my 9 year old was diagnosed less than 2 months ago. Push the shriners option and reach out to Dr Betz at the Shriners in Philadelphia. I have done a ton of research and Shriners seems to be the best with kids. We will go to Shriners in Houston first and then make an appointment with dr betz in Philadelphia.

    Don't panic, she will be ok. I know it is scary and devastating but things do settle down after a plan is set.

    I will keep you and Madisyn in my prayers.

  3. #3
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Texfinn

    Another option for you would be Texas Scottish Rite in Dallas. They're awesome and services are free of charge just like Shriners. I took my daughter there for a consult and really liked the hospital and staff. Ultimately, did not have the surgery there but they were at the top of our list.

    Best wishes.

  4. #4
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Quote Originally Posted by Lkershner View Post
    [B]

    So, please help me with a poll and tell us-
    1. How many years post op are you? (we are looking for long term results maybe 5 years, 10 years, 15 years post op)
    *I'm responding for my daughter and she's 3.5 years post at this time and doing very well.
    2. Are you in pain?
    *No, she doesn't have much pain.
    3. Were you in pain before the surgery?
    *Yes, she was in a lot of discomfort prior to surgery, especially in the lumbar area where her major curve was.
    4. Have you had normal relations with others?
    *She's 18, soon to be 19. I wouldn't say she's like a typical teenager (partying, shopping, etc) but she never was. She likes to read, study history, draw and she's a complete homebody but I guess that's normal for her :-)
    5. Do you feel any part of your childhood was stolen?
    *My dd was 12 when diagnosed. Her curves progressed over the next 3 years. We tried many different therapies and braces but nothing worked to stop or slow down the progression. So, yes, all the doctors visits and therapies did interfere with her carrying on with a normal life but it wasn't so bad that it has left lasting scars. I think she's a stronger person for what she's been through, I'm sure most people on here would attest to that.
    6. Did the surgery improve your life?
    *Yes, surgery has improved her quality of life. She's able to go all day without being fatigued and in pain.
    7. Did you have any complications?
    *No major complications, a possible hematoma at the site of the drainage tubes that caused her quite a lot of pain for some time but that resolved eventually and I don't think that's common anyways.
    8. If you had the option to go back- would you do it again?
    *Yes, for her and myself.

    Is there anything else you'd like to share?
    I think your greatest concern is the growth factor, I would be concerned too. There are several cases on here of kids who've had crankshafting after surgery because of spinal growth. This is probably the thing you really need to get answers to.
    Otherwise, kids your dd's age usually do very well after surgery, they bounce back quickly.


    I appreciate all of your thoughts and efforts in advance

    Madisyn's Mom
    Take care!

  5. #5
    Join Date
    Apr 2011
    Posts
    4

    Thank you

    Thank you so much for your kind words and thoughts.
    This forum gives hope and a sympathertic ear.

    It is so good to hear your daughter is leading a "normal" teenage life! (are any teenagers actually normal? I'm sure we all think they have their quarks)

    But sincerely, I really do thank you for your opinions and responses. I hope to hear many more from others.

    We have our first follow-up with MRI results Thursday, then a second opinion at Shriners next week.
    I'm biting my nails already. Crankshafting happens to be #1 on my concern list.

  6. #6
    Join Date
    Mar 2004
    Location
    Maine
    Posts
    28

    fusion

    I am hoping others will add to this thread.

    It looks like fusion is in my daughter's future. Most likely T-4 to L-4. Would like to hear more about how people are doing who had fusion as a teen (especially that goes to L-4). My daughter loves to dance.

    Ann
    Mother to 14 year old daughter
    Diagnosed with infantile scoliosis at 6 months (54 degree left thoracic)
    Boston Brace for 5 years.
    Montreal to see Dr. Rivard and Dr. Coillard 7/04 to 1/08(spinecor brace and 3 casts)
    surgery with Dr. Clements Oct. 2008 (8 staples and a hybrid rod)
    3 lengthenings with Dr. Samdani
    Scheduled for fusion with Dr. Samdani

  7. #7
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    I just want to suggest that it is important to compare the answers to this polls to the answers not only from fused patients but also from untreated patients, especially 10 yo girls with curves >50. You might need to correct for if they are still alive. For example, I do not think my daughters would necessarily be alive now absent their surgery. It's important to capture those data when evaluating surgery.

    So there are essentially three groups:

    1. untreated large (i.e., surgical) curves
    2. fused curves
    3. normal

    The (tacit) comparison we so commonly see is made is between #2 and #3 but that really isn't relevant. The only relevant comparison is between #1 and #2 because normal is off the table at that point. It becomes a game of cutting losses. The reason surgey is recommended is that the situation for many kids is that #2 appears to be FAR superior to #1. So superior that it outweighs even the (small) surgical risk. Otherwise it wouldn't be recommended. And yes there is only a bit of data for the out years on surgery. There is some data on the out years for untreated large curves. But like my daughters, you have to actually survive in the short term to even have a chance at any out years.

    Good luck to everyone.
    Last edited by Pooka1; 04-20-2012 at 06:23 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."

  8. #8
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Quote Originally Posted by arairdon View Post
    I am hoping others will add to this thread.

    It looks like fusion is in my daughter's future. Most likely T-4 to L-4. Would like to hear more about how people are doing who had fusion as a teen (especially that goes to L-4). My daughter loves to dance.

    Ann
    Stopping a fusion at L4 is pretty unusual these days, so you may have some difficulty finding someone.

    Best of luck.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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  9. #9
    Join Date
    Jan 2008
    Location
    NC
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    8,903
    Quote Originally Posted by LindaRacine View Post
    Stopping a fusion at L4 is pretty unusual these days, so you may have some difficulty finding someone.

    Best of luck.

    --Linda
    I can only think of three cases of a kid being fused to L4 on the group since I started reading in early 2008. One is an active poster so maybe she will see it.
    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."

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