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Thread: Appointment today

  1. #1
    Join Date
    Apr 2012
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    13

    Appointment today

    We had our appointment with the second orthopaedic surgeon. Christen is having T5-L5 fused. Surgery us scheduled for June 12th. I'm a bit overwhelmed, and my husband is taking it pretty hard. Christen is acting like she doesnt have a care in the world.
    DD #2 fused T-2 through L-5 07-03-12
    DD #3 9y/o progressing. 19 degrees as of 01/13

  2. #2
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Hi, it can all be so overwhelming at first and that's normal. I was a wreck or a while when I was first dealing with my son's scoliosis but mostly b/c of not getting any answers from anyone. I looked at your blog and it says there are no posts so I don't see an x-ray.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  3. #3
    Join Date
    Jan 2008
    Location
    Oregon
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    1,160
    Hi Chrissy's Mom,

    It would be important to ask the surgeon about the necessity of going to L5--that leaves just one disk below, which places a whole lot of strain on that level. There has been a lot of other discussion about this here, about surgeons bending over backwards to stop at L3.

    It would also be very prudent to get a second surgical opinion, from a surgeon who is a pediatric scoliosis specialist. Shriner's Hospitals are excellent if there is one near you. You can search for a specialist in your area at www.srs.org (the Scoliosis Research Society). Sometimes there are varying opinions about what levels to fuse, etc. I would really want to exhaust all possibilities before you let them fuse your daughter to L5.

    I hope my candor does not scare or offend you--I understand how difficult and scary this all is and I wish the very best for your daughter.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,793
    What Gayle said.... totally agree.
    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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  5. #5
    Join Date
    Jan 2008
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    NC
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    Please read this thread and the links.

    http://www.scoliosis.org/forum/showt...y-Doctor/page2

    I am not a surgeon but I can read. I can tell you I cannot recall reading about a child fused to L5 on this group. I can only recall 3 who were fused to L4. The rest are fused to L3 and higher. It is no coincidence. There is a reason for that.

    There are kids who have large L curves and still they are largely not fused below L3. There is a reason for that.

    Please ask at least two pediatric SRS surgeons to explain the need to go below L3 on your daughter. Maybe some other guys will give you a consult from the radiographs alone if you tell them you are looking at a fusion to L5. Dr. Hey in Raleigh does that and he is also the one who spent a lot of time and effort contouring the lower lumbar on a 14 yo boy so he could stop the fusion at L3 (see link in thread). There is a reason he did that.

    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."

  6. #6
    Join Date
    Jan 2008
    Location
    Oregon
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    Hi Chrissy's Mom,

    here is a post from Dr Lloyd Hey's blog about a girl in a somewhat similar situation to your daughter's.

    <This morning we straightened up Claire, a 14 yo from Richmond
    Virginia. She had a progressive double curve scoliosis with 58
    degree lower curve, and 40 degree upper curve.
    She came and saw me for a second opinion last month after she was
    scheduled to have scoliosis surgery with fusion down to L5.
    Bending films at Hey Clinic taken that day suggested that the lower
    curve, although large, was nicely flexible at the base, so I was
    hopeful we could spare her 3 rather than 1 lower disc spaces (a BIG
    deal).>

    Your daughter will not be harmed at all by waiting a few months longer while you find the right surgeon with the best surgical plan for your daughter, both now and for her long-term spine health. She is young and will have an active life ahead of her, and stopping the fusion at L5 starts the clock ticking on her getting disc degeneration and pain (and additional surgery in the future) at that lowest level. Please get a few more opinions to try and avoid this.
    Last edited by leahdragonfly; 04-27-2012 at 09:00 AM.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  7. #7
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    Jan 2008
    Location
    NC
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    Gayle, excellent find! That is so close to the OP's situation.

    I would print that out and ask surgeons to comment directly on it. Maybe bring the bending films to subsequent appointments. I may have new bending films made. I knew ahead of time that they use the bending films to help determine the lowest fused level. So on the second kid, I coached her to bend for all she's worth to hopefully level L1 so the fusion could end there. I was afraid it would go lower because the surgeon thought it might go to L2. I was going to give him enough ammunition to stop at L1 as I could.

    Now in your daughter's case, you probably want to demonstrate the maximum flexibility, not level a vertebra but the point is the same... get good bending films.
    Last edited by Pooka1; 04-27-2012 at 11:31 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
    Apr 2012
    Posts
    13
    I'm not going to defend my Dr, as I am confident in his ability. I have had two opinions, including from an SRS specialist (James Shook). Both said T-5 through L-5. It is difficult enough explaining to every person who hears about it that we aren't "jumping into surgery" and that she can't fix this by sitting up straight or going to a chiropractor. I might start cussing at the next person who tells me we should try a brace first. I didn't expect to come here and be second guessed. When I am looking for opinions, I come right out and ask for them. Some of these condescending responses feel as though they are intended to cause doubt and fear, and those are things I don't need. I will find somewhere else to go for support.
    DD #2 fused T-2 through L-5 07-03-12
    DD #3 9y/o progressing. 19 degrees as of 01/13

  9. #9
    Join Date
    Jun 2011
    Location
    Southern CA
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    2,224
    Quote Originally Posted by ChrissysMom View Post
    I'm not going to defend my Dr, as I am confident in his ability. I have had two opinions, including from an SRS specialist (James Shook). Both said T-5 through L-5. It is difficult enough explaining to every person who hears about it that we aren't "jumping into surgery" and that she can't fix this by sitting up straight or going to a chiropractor. I might start cussing at the next person who tells me we should try a brace first. I didn't expect to come here and be second guessed. When I am looking for opinions, I come right out and ask for them. Some of these condescending responses feel as though they are intended to cause doubt and fear, and those are things I don't need. I will find somewhere else to go for support.
    I have not responded to your post before.However, I have been on this site since 2009 and these people are the best. They are only trying to offer some other opinions on a surgery that might not be the best for your daughter. I have no knowledge of teen's scoliosis surgery so I can not offer an opinion about what is best for your daughter. I am a parent of a teen who has had serious surgery and I do know how how stressful that situation can be.I think that giving this iste another chance is a good thing to do
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  10. #10
    Join Date
    Jan 2008
    Location
    NC
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    8,901
    Quote Originally Posted by ChrissysMom View Post
    Both said T-5 through L-5.
    Hey, we aren't surgeons. If you have two experienced spine guys tell you L5 then that might be inescapable. Life is unfair.
    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."

  11. #11
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    Making a decision is so hard. I spent 34 years wondering about what was going to happen since I was a Luque wire candidate in 1975. Those really were the dark ages of scoliosis, Doctors really didnít know or really want to offer any information since questions are easy and answers are so difficult....

    Today this wondering has been helped through this forum. Many of us were there through the years and now that there is a forum, we feel that we are all the same boat, and try to cover all the bases. Internet communication can be difficult....

    Anyway, this really is a great forum and we do care and watch out for one another here. I donít think you need to go to another forum for support.

    I wish you luck and all the best for your daughter. She will do just fine....the kids adapt wonderfully.

    Deep breaths, and try not to worry too much....
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

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